Rest in Peace

After a courageous battle with Parkinsons’ Disease, my beloved husband, Milo, passed away on 2nd November 2012.

He had lived life to the fullest and took his last breath with grace and dignity in his own home with his beloved daughter, Lori, and me.

Milo leaves behind him his beloved children:

Lori (Bob), Lisa and Mike (Jennifer).  His son, Mark, preceded him in death.

Paul(Patti), Philip (Vicki) and Andrew (Amy) – his beloved step-children.

BJ; Ryan (Elizabeth); Kyle (Amber); Laura; Chris (Chelse); Sarah; Michael; Mychaella; Christie; Tyler; Justin; Chad; Sydney; Alison; Madison; Aaron; Adan; Cameron; his beloved  grandchildren.

Lilliana and Addilyn, his beloved great-grandchildren.

And last, but definitely not least, our much-loved God-son, Mark.

Milo filled my life with love and humor and a huge hole has been left in my heart.

Thank you for caring.

Rosemary 

Hospice

It has been two weeks now since the doctor made the decision that Milo be evaluated for Hospice care.   This referral occurs when both the doctor and Hospice Medical Director make a statement that the patient’s presumed life expectancy is about six months or less.   Hospice care is for comfort and not curative care.

A social worker was the first one to arrive and she spoke to me of many things including the fact we could always change our minds and have him admitted to a hospital.   Hospice provides compassionate services and level of care as ordered by a physician that Milo would need twenty-four hours per day.  A Registered Nurse case manager was assigned and Milo’s personal caregivers continued their vigil.  A Hospice Chaplain is also available to provide support.

If Milo’s end-of-life journey wasn’t so sad and, at times, simply unbearable I have to admit that nature serves the human spirit well and I found I could laugh through my tears.

Several days after a hospital bed was delivered, Milo requested an audience with my sons Andrew and Paul.   I just knew in my gut that the love of  my life would want to tell them to look after me, their mother.   The young men crept into the quiet room and in a voice that was clear and lucid he said “Would you run down to B and B’s and buy me a steak and cheese sandwich?”   The closest they could come to that request was a hamburger of which he ate a sliver.

Milo started to become agitated and he would try to get out of bed, I was assured that this was a part of his ‘letting go’ and the Hospice team told us that this often indicates the patient has ‘unfinished business.  What that could possibly be, I just don’t know.

It was a few days after the Hospice team arrived that he thought he was in the hospital and he would ask me why our dog, Rider, was allowed into his room.   I reassured him by saying we had got special permission for this treat.  He would look around his room in our house but didn’t recognize the contents.   He then moved his soul to Florida and told me that Disney World was just down the road from our motel and would I hurry up and pack our bags so we could get back home to California and would I please drive the first three-hundred miles.   He even asked Paul to check the oil in the car.   One day he told me to remove the photos in his room and wrap them in a blanket.   At first I thought it was because he couldn’t stand the eyes in the photos staring at him in his moments of distress, but now I think he wanted to make sure that they wouldn’t be left behind when we returned home.

A few days ago, I told Milo we were back in California and since then he has slipped a little further on his journey.   He has now become unresponsive but we continue to talk to him and sometimes when I kiss him on the lips,I am sure there is an answering pressure .

Today, my beloved husband was taken off all pills and put on liquid morphine to ease his suffering.   I think it is time to say ‘goodbye’; how soon, I don’t know. I just know you will understand the sorrow I feel but I needed to tell my readers of his brave journey; one full of courage, love and constant humor.  You have followed his journey from October 2004 to the present time and I trust my words have helped in some way.

Please hold Milo close to your hearts and keep him in your thoughts and prayers.

Good times

A friend of mine, Maggie, suggested that I incorporate some humor and mix in my words – I have to admit that when I started this blog I had vowed that I would pepper my words with humor.   It is unfortunate, therefore, that for the last few months the days have, at times, been overwhelming even though Milo’s spark of humor sometimes breaks through.   I heard him tell a friend that the doctor had told him not to buy green bananas but I have an awful feeling that that piece of information was not thought funny.

Milo and I have been married thirty-five years.  Not every day has been blissful, after all we have a blended family of seven children – need I elaborate?   However, we have had more than our fair share of fun.  In another posting perhaps I’ll write about the adventures of family life.

I know I have also written that I try to laugh at least once a day as I don’t want those frowns and gravity-pulling mouth lines to meander downwards to my chin.  Which brings up another point – no matter what potions and lotions I use, those creases never seem ‘softer’.   Even though I know better, the ‘hope in a bottle’ continues to tempt me and while I’m thinking along those lines, I have to be frank and tell you that it’s the photographs of me that I hate.

“Who is that old woman?” I ask myself as I rip the all too revealing photos into shreds.   “Surely that’s my mother.”    Wouldn’t you agree that nature plays an awful trick on us?

“How well you look.” – or –  “You’re looking good.”   The patronizing words I hear are all too powerful.   I know people mean well but I can’t help feeling miffed.   What on earth happened to that good-looking woman of yore when people flattered you and held a door open or pulled a chair out for you to sit down on?   Wouldn’t it be wonderful to have someone buy you a drink and hold you in their arms to dance to those old familiar tunes?

Ah, those were the days.

But there is an upside to aging.   I can now be myself, warts and all.   I no longer have to dye my hair blonde and –  gasp – I sometimes go without a bra.   I love the fact that I can speak my mind and am now brave enough to dismiss those people I once had considered friends when their gossip or comments hurt; why bother with people you no longer enjoy the company of?

I’m working on my personality now.   I plug in my electric piano and open my beautiful purple door so the neighbors can hear a concerto in full blast; they will doubtless think I am a talented musician.  Or I go out to my front yard, hat on my head, trowel in gloved-hands and nod at my neighbors as they exclaim over the beauty of my roses; will my gardeners mind that I take credit for their hard work – after all I do help with the pruning?   Eccentricity runs in our family, a trait that is expected of the English; I now want to live up to my potential.

Is it vain to say that I see a softer and younger woman in the mirror and tell myself I’m not too bad – for my age?   Is it catty of me to say that those gorgeous ‘older’ women (in their forties and fifties)  who are photographed for magazine advertisements do have the advantage of technology?   After all, evidence of their wrinkles are erased in seconds.   Isn’t it time that this particular technique was made available to us all?   Perhaps we should insist on vaseline being used on lenses of all cameras, I heard somewhere that this  tactic may help with the end results, however, it does sound a little messy.

But I am rambling.  I just wanted you to know that it’s not all doom and gloom in our household.   Yes, I have to admit that my eye sight is not as good as it once was and my hearing is challenged but it does have an upside.   The vision I sometimes behold in the mirror is not all bad and the conversations and complaints that often fill my day go unnoticed, and, when all the kids and grandkids are here, just think, I can just glaze over in the corner and appear to be the perfect granny.   And as for Grandad Milo, he may be having one of his good days.

Yes, my days are often just right.

Unsettling news

The news was unsettling.   A visit to Milo’s neurologist, Dr. H., revealed  what we already knew in our hearts.   Milo’s body was beginning to shut down.   Milo had been having some bad days; extreme weakness, unstable blood pressure and no appetite, he had also been vomiting.

“I feel, at this time, that we should concentrate on the quality of your life rather than trying to cure your every bodily ill.”  Dr. H’s words were blunt and to the point as he told Milo directly.   “I also think it’s imperative that you have a ‘DNR’ (Do Resuscitate) order on file.”  (Both Milo and I have a DNR prominently displayed on our refrigerator in case of emergency as the horror of being brain dead and then kept alive artificially is something that neither of us want.  However, this decision is extremely personal and should not be taken lightly.)

During this visit, Dr. H. decided to reduce the dosage of the Parkinson’s Disease medication that Milo was taking and replace the blood pressure raising drug with one that stabilizes the pressure and may increase the patient’s appetite.  The primary doctor’s prescriptions were left in place.

Because of the neurologist’s words, both Milo and I knew there were many things we needed to talk about.   The words were hard to find and difficult to articulate; and, our emotions were close to the surface.

Milo and my Trust is up-to-date, however, we felt it necessary to have personal, emotional and spiritual wishes in place for the end of life.   There is a publication available called ‘Five Wishes’ (www.agingwithdignity.org or 888-594-7437) and it is easy to understand.   This material allows a person to express their wishes when it comes to care decisions, the medical treatment and also the comfort levels they desire.   There is even space for those last important requests.   Difficult as it is to deal with the subject of death, here at last is a brochure that help families face a subject that once may have been considered tabu.   Be aware, though, that in some states they may be reluctant to honor this publication but it is, however, a patient’s right to decide what kind of medical treatment they want and they also have the right to choose someone to make health care decisions for them should the time come when they are no longer able to do it  for themselves.

I expect you’re wondering how I can be so calm and collected in this posting.   Well, amazingly, the change in medications that Dr. H. made have not only increased Milo’s appetite, but his speech is clearer and he seems brighter.   However, Milo is still extremely weak and his blood pressure continues to hit extremes, but one has to wonder – could it be that his medications in the past have been too strong – or am I grasping at straws?   Of course, time will tell, however, in the mean-time we take every day as it comes, but every day is still a roller-coaster of fear when hope lingers and then is dashed to that valley of dread.

But as the old adage tells us ‘Hope springs eternal’.

there is no escape

As I mentioned in my last posting, i had hired a care-giver to help me with my husband, Milo.   Since those few words I have had to hire another care-giver to share the load; I now have two girls to help me and they divide up the week between them from 8 – 12 a.m. and then from 4 – 9 p.m.   The cost is huge and one can only hope that our savings will last and it will be unnecessary to seek help from our children.   This blog, therefore, comes with a few suggestions – and warnings – for families who may need help with caregiving expenses.

It was a wake-up call for me after reading a very interesting article by Kelly Greene of The Wall Street Journal.   The writer tells us that, and I quote, ” twenty-nine states have ‘filial support’ laws that could be used to go after patients’ adult children for unpaid long-term-care bills.”   The author also states that the best defense is for the family to get legal advice as most people need some sort of help by the age of eighty.  Check out ElderLawAnswers.com.   The writer of the article continues and says that should your parent wind up with a nursing-home bill that cannot be paid, “the key is not allowing a gap to form between private and public payments that later becomes a claim against the family members”.   (The author credits Katherine Pearson, a law professor at Pennsylvania State University and director of its ElderProtection Clinic. for this information.)  It’s wise to do some research about these issues as all states in the U.S. have different policies.

Milo and I did not buy long-term insurance.  We made a conscious decision not to buy this protection as it was so expensive and at that particular time the stock market was doing relatively well and we thought we would have plenty of money to cover any emergency.   No one could have predicted the economic disaster that has befallen us all during these past years.   Looking back, perhaps the insurance would have been the best option.

Another great article I found was by David Sayen* in the Orange County Register newspaper; he writes about Medicare coverage for hospice care.  He mentions that this program helps care and support people who are terminally ill and focuses on comfort.   If a patient qualifies for Medicare’s hospice benefit, a specially trained team and support staff is available to help the family.  To be eligible for Medicare-covered hospice services you must have Medicare Part A  hospital insurance and your doctor and the hospice medical director must certify that the patient is terminally ill and has six months or less to live if the illness runs its normal course.   For more information check out the Medicare web site or phone 800-633-4227.  (*David Sayen is Medicare’s regional administrator for California, Arizona, Nevada, Hawaii and the Pacific Trust Territories.)

Currently, there is an Ad campaign being aired by AARP*  giving a message for caregivers to not to neglect their own needs – that makes me laugh, and not from amusement – many of us find that often there is no choice but to grin-and-bear-it.   According to AARP’s representative, the average U.S. caregiver is a 49-year old woman who, on top of her everyday chores, provides about twenty hours a week of unpaid care to help out her parents.  AARP’s website is aarp.org/caregiving.   I imagine that the next person on the list is the wife who ends up caring for her husband twenty-four/seven- an exhausting job and one that could cause an early demise of the care-giver.   AARP’s report also found that family members give $450 billion worth of unpaid care annually,  and I would like to add yet again that there comes a time when the piper has to be paid.

My advice to all, therefore, is to start hunting for resources, check out the sites that AARP recommends such as eldercare.gov or archrespite.org .    Apparently there’s a new ‘Prepare to Care’ brochure that offers to-do checklists for families new to care-giving and, according to AARP, for those not web-savvy they can call a hotline at 877-333-5885.

I have been a care-giver for nearly eight years and I wish I had been privy to all the information that is now available and hopefully my blog has given you some helpful advice.

Health is better than wealth:   16th cent. proverb.

* My thanks go to those mentioned above and for the valuable information that I have garnered from them.

Help is at hand………..

As mentioned in my last posting, the time had come for me to get some help in the caring of my husband, Milo.   Before my ‘melt-down’, I had done some research into different in-home care-giving agencies.  In the meantime, physical therapists and nurses had come to the house to monitor Milo and to exercise and strengthen his muscles.   They were wonderful and i wish i could have had them here all the time, but it was not to be.

I can only relay to you what I have experienced and how I went about hiring a caregiver.   I am extremely fortunate that my step-daughter, Lori, is an experienced nurse connected to home-health care; she is a mine of information and she set me on the right course.

While doing the research on different agencies, I found that the costs varied a lot – some facilities wanted over $30 an hour, way out of my league.  Then I found one at the other end of the spectrum who wanted $100 per day as a live-in.  But I needed to find an agency who was properly insured with liability insurance, workers’ compensation and that the care-giver be bonded.   Identity theft is rampant and back-ground checks are imperative, after all I was going to have someone in my home who would have access to a lot of personal things.    I also wanted the care-giver to be responsible for their own social security payments and be able to speak English.   Being British brings its own culture eccentricities too; I needed someone who would be accepting of my quirks.   But above all, the care-giver needed to be experienced, qualified and kind.  Would I ever find this paragon of virtue?

As mentioned in my last posting, my son, Paul, had taken charge.   He immediately called the agency at the top of my list who, incidentally, had also been recommended by our doctor.

The owner of the in-home care facility we contacted was at our house within an hour to appraise the situation; she realized instantly that twenty-four hour care for Milo was necessary and that I needed some immediate respite.   She felt that ‘Blessie’, a qualified care-giver, would fit the bill.

Fortunately, Blessie was available to help us and arrived promptly to take over.   Enveloped in a haze of gagging perfume, she was also ‘loud’ – two straits that I happen to dislike.   And, I had to admit that having someone in my home is one of the most difficult things I have ever had to do; it is not easy to lose one’s privacy.

“Ma, ‘suck it up’.”   My son was adamant.   “Those straits you mention are minor issues that can be dealt with easily.”

I knew he was right, but the stubborn streak that ran down my back bristled.

I relinquished my bedroom to Blessie and moved into the guest room far enough away so I wouldn’t be disturbed at night.   At first, Blessie was on call twenty-four hours a day, seven days a week.   She was a God-send and soon enough she was perfume-free and her voice lowered to a more reasonable level.   But it was, and is, hard to watch strangers going through cupboards and drawers that you had once considered sacred.

My emotions were close to the surface while acting as a watch-dog making sure that Milo was in capable hands.   As I slowly let go of the control, I started to let Blessie do her job and after two weeks she went home at nights and then returned for twelve hours per day for another two weeks.   Now she comes in for five hours a day, five days a week from 4 p.m. to 9 p.m. when both Milo and I are ready for some help.

The cost is high both financially and mentally for this type of care-giving and it concerns me that our savings won’t last and, should Milo live for many years and I’m still alive, will there be enough money left for me to survive on?   It’s a question that concerns us, the aging population of America.  For some of the less fortunate in California, Medicaid may cover some of the cost of care, but for those of us who have saved hard for our retirement, we have to rely on what ever funds we have put aside for emergencies.   I know I do not want to turn to my family for any type of assistance while they are struggling to put their children through college while at the same time trying to pay-off mortgages and such.   It’s a dilemma that many of us will have to face.

Some type of care may be inevitable for many as age-related disease-ridden bodies become more and more prevalent in our society but hopefully we of a certain age will face this time with grace and fortitude – and with a few dollars left in the bank.   I hope this blog is a wake-up call for all.

To save money, it was said of old Sarah, Duchess of Marlborough, that she never puts dots over her i’s, to save ink.  (Letter to Sir Horace Mann, 1785)

it was the finger that did it…………

My children had told me ‘it was time’ for over a year.   But what can I say except I am a control freak and resisted the temptation.   And, then, realization had set in – I couldn’t do it all.   I had to give in or pay the price and, heart-breaking though it was, admit defeat.

Milo, my husband, had been in a rehabilitation hospital for ten days.   He had the best of care with the nursing staff fussing over him and giving him all sorts of help and attention; about ten people were at his beck and call all the time administering to his every need.   Just before discharge, and with assistance, Milo had begun to walk the halls quite well. Every move he made was monitored carefully, and even though an awful diaper rash had appeared, it was time he came home where his healing could continue under my loving care.   I didn’t even question my decision  – I knew I could do it all – and be just as good as the expert help at the hospital.   ‘Pride comes before a fall.’

Although thrilled to have my husband back home, within hours I was already doubting my ability to care for him.   Exhaustion was setting in quickly.   Disturbed nights and Milo’s weight was becoming a huge burden; he had obviously enjoyed every morsel of food offered him while in the hospital.   And, I hadn’t realized the care involved for a patient who was recovering from a stroke that was combined with a disease such as Parkinsons’.

Several days after his return, I knew I couldn’t do it all.

It was the finger that did it.   I have arthritis in my hands and the index finger on my left hand sticks out as though in a permanent pointing position, it just won’t bend.  It was in the bathroom when I jammed the unyielding finger while trying to squeeze Milo’s swollen leg into a strangle-tight stocking; the pain shot up my arm into my shoulder with horrifying speed.   It was then I started to weep.  I couldn’t stop the racking sobs and Milo sat still on the toilet unable to help me, or himself.   Still sobbing, I hauled Milo into the living room, settling him into his chair and giving him something to eat and drink, tears running down my cheeks, I phoned my oldest son, Paul.

“Is that you Mum?”   My son had answered his cell phone as my sobs had turned into a screeching wail that seemed to come from deep within my gut and drawn up through my throat and thrown out to echo through my house like a banshee.   Drama at its best.

“I’ll be right there.  It will be o.k.  Just hang on a little longer.”   Paul was in my home within half an hour and at last I felt I could turn things over and let go – the time had come and I knew I needed help.   My son had become the parent.

My melt-down had been dramatic and terrifying; I felt I had reached the point of no return and had fallen into a pit of despair that was so deep and black, its walls so steep, that I wondered if I could ever climb back into a life I once knew.   Paul had thrown me a life-line and he dragged me up inch by inch until my fingers curled around the rim of the abyss.   Help was at hand.

As an aside, I had already begun some research on home-care agencies; it was now time to hire a care-giver for Milo; I had no choice as my health had now been compromised.

‘Tis not enough to help the feeble up. But to support him after.  Shakespeare: Timon of Athens.

to be cont…..

Ghosts………..?

It was after Milo’s stroke and he was wide awake when he started having hallucinations.  The visuals my husband was experiencing were very real to him and the first one he had nearly unnerved me.

“What’s Ryan doing down here?”  Milo asked me.

“Darling, he won’t be visiting us until next month.”  I replied.

“But he’s standing right behind you,”   he said.

Milo was looking at the door and I quickly turned around.   There was no one there.   Our grandson, Ryan, looks somewhat like Milo’s youngest son, Mark.   Mark had passed away in March 2004.

So that was the start of several vivid perceptions that Milo was experiencing.

One day he saw three women standing at the end of his bed; they were dressed in blue.

Another time, he asked me if I had slept with him the prior night.   Not wanting to discount such events, I nodded.    (As an aside, I sleep in another room.)

“Oh,” he said.   “I thought that was you in my bed, but I wasn’t sure.”

I could use some help around here, so, if I catch the woman who was apparently in bed with him, I would like her to stay.

Milo was fully conscious during these episodes and I understand that it is not uncommon for Parkinsons’ Disease patients to experience these optical illusions.   Freud’s interpretation of hallucinations is that they are the recipient’s unconscious wishes.

There is no doubt in my mind that caregivers must be ready for any adventure.

 

 Alas!  How is ‘t with you, That you do bend your eye on vacancy And with th’ incorporal air do hold discourse?  Shakespeare: Hamlet

nirvana…………

Have you ever felt the urge to just get away from the hustle and bustle of every-day life?   No television, no traffic, no searing noises or constant demands; well, I have discovered such a place where all this is possible.

Browsing through a Road Scholar catalogue, for those ‘Adventures in Lifelong Learning’ I came across an adventure that tempted me.   While I am not a Buddhist, I chanced upon The Land of Medicine Buddha, a facility tucked away in Soquel, California.  I have visited this haven several times and have found that it takes me away from the stresses of everyday life and renews my soul.

“Go to the end of the road and across the wooden bridge.”   The directions I had received were simple and explicit and I found a place of peace in a forest south of Santa Cruz, California.

Following the twisting narrow lane draped with branches from towering redwood trees, dappled sunlight lit the way to a prayer wheel slowly turning in ‘a center for healing and developing a good heart’.   The guest accommodations lay off to one side of the compound, and, although basic, the beds were comfortable and the toilet facilities adequate.  No blaring television or radio, just the sound of silence amidst the breeze-driven quivering trees.

A day of renewal began with welcoming words to people of different faiths and walks of life who had come together to experience the Buddhist philosophy and insight.   After a vegetarian meal served early the next day, a leader gathered the mixed group of hostelers together urging them to ‘not take themselves too seriously, to eat simply and less, remember to stretch and walk daily, open their hearts to friends and family, and, to give thanks’.

Lennie, introducing us to meditation, urged us to sit comfortably in our chairs, our backs straight while encouraging us to breathe naturally.  Minutes later our breathing slowed as we became more relaxed; self-healing was beginning.    Later, from under a halo of curls, a young woman, Breige,  demonstrated Chi Gong and the aging disciples swayed in unison following her movements closely.

We placed our feet in bowls of warm water peppered with essential oils and put fragrant warm compresses on tense necks as we learned about aromatherapy.   “For arthritis inflammation, use lavender or chamomile” the warm and gentle voice told us.

We took walks along the trails guarded by the tall pine trees and learned about the herbs growing in the shade along-side banana slugs.  Birds chirped and fluttered through the branches of the ancient trees while deer grazed among the lush grasses.  Peace enveloped us.

As I turned a prayer wheel, I whispered the Buddhist words of compassion “om mani padme hum’ and allowed my eyes to seek out a wooden staircase wending its way up through a bank of blue periwinkle flowers.   At the top of the steps stands Tara Home; a hospice in which one terminally ill person lies.   I once had the privilege of visiting this white-painted cabin of compassion and while sitting there I could sense the tranquility that pervaded the cozy and beautiful rooms.   Surrounded by dedicated volunteers twenty-four hours a day, a patient lies in Tara Home’s sanctuary, loving kindness allow the invalid to not only die with strength and dignity, but also with serenity – and they are not alone.

Like a dear friend’s husband, when my time comes to die, I am fortunate enough to have a large and caring family to comfort me through my last days on earth; however, there are many people who are not as blessed.   Tara Home fills a need for those lonely souls and, regardless of religious affiliation, here they will find a haven.

I left this refuge in the forest feeling refreshed and rejuvenated; a feeling that would last many weeks.   A restful and harmonious place that I wanted to share with those seeking nirvana.

If you would like more information check out these websites:

http://www.roadscholar.org        www.medicinebuddha.org  and http://www.tarahome.org.

walk a mile…………

I received a comment from Beth ‘middlescapes.wordpress.com’  who suggested I post a few words about how caregivers really feel.   For those of you who have followed my blog, you have probably discovered that I like to make ‘funny’ and try to make light of things.   Believe me when I tell you that it’s a struggle every day but am not looking for pity, just understanding.

All caregivers, no matter how, or where, give of themselves as they walk side-by-side those whom they love and protect.   These saviors are usually drained by the end of the day both physically and mentally and, sadly, sometimes they will decide to give up when they feel they are no longer up to the task.  I have close friends who are carrying huge burdens as they watch their loved ones die bit-by-bit, but they too are dying, bit-by-bit, with grief.   Right now they have a  far heavier load than I as they carry out end-of-life requests for their loved ones and I admire their strength and fortitude and wonder if I would be able to follow in their foot-steps.   I can offer them no help except understanding as they walk that lonely path of pain.

When I wrote those last words I realize that perhaps I should show sympathy to those who seem blind to the battles that we caregivers grapple with and forgive those who turn their heads when a hand stretched out to help would be so much appreciated.   But when a door slams back on a wheel-chair and callousness rears its head, i find it hard to ignore and resentment sets in.   But, ah, when I take an offered hand,  indignation of past ignorance disappears.

When I start my day, usually before 6 a.m. as this is the time my husband, Milo, needs his pills and have his Depends changed, I already feel tired at the mere thought of facing the day.   Before I walk into the other bedroom, I wonder if Milo will still be breathing and I will bend over his sleeping body to check the rise and fall of his chest.  As I put my feelings into words, I feel a certain shame and, probably, to the absolute horror of many, it’ll be hard to understand when I admit that I’m weary and that a part of me wishes that he had left this world and will finally be at peace.   But the sick person doesn’t hear the unspoken word, they only see the gentleness we sometimes fake.  We are on stage again; and we smile; and it’s difficult to do.

But I am writing this to be frank and I am sure there are many who have the same wants as me.   I have to acknowledge that I want my life to go back to normal and without the responsibilities that face me day after day.   I want to feel the arms of my husband around me again.   I want to be able to join my friends without arranging for alternative care for my companion.   I want my back and hands to stop hurting from the constant abuse that they receive.   I want to have a life where I am not that person who has to take out a smelly, Depends-filled garbage can to the curb-side.   I want more patience and compassion.   I want; I want; I……….    But, as we do not want to bore others with our whining, we make ‘funny’, fibbing while telling others that all’s right with the world.

Alone inside four walls, I sometimes descend into a pit of despair but  hang on to the edge of that dark hole by my finger tips knowing that I cannot afford to start a downward slide.   In an earlier posting I retold an old saying  that tells us that ‘when at the end of our rope, tie a knot and hang on’; most of us caregivers do this many times a day.   But I ask myself  “will the day come when it’ll be easier to just let go?”   I hope not.

Caregivers’ days are monotonous and long.   My patient mumbles and I strain to hear  over the television’s blare.   My head is on fire with questions.   Will I miss a medical symptom that could be life threatening?   Will I lose my patience?   What if compassion can no longer be found?   But there are no answers until they need an actual response and in the mean-time more questions join the queue.

Find a support group, I am often told; but do I really want to hear the horror stories of others and take on their pain as well?  I guess I don’t really want others to see me as I really am, I want to appear strong and brave and keep that stiff upper lip.  And now I have revealed the truth will you think less of me and know that my inner self is actually a quivering mess?

Some days are a lot brighter than others  and when I see a spark of humor return and Milo’s responses are less garbled, I feel a glimmer of hope that perhaps he is on the road to recovery.   But it’s a roller-coaster journey.   One day I know that I will have to face the day alone, then, maybe I would welcome the dragging out of that smelly old garbage can filled-to-the- brim with Depends.   And, yes, I do dread to think of that day and trust that you will comprehend and not think ill of me that I have voiced my thoughts out loud; after all, I am only human.   But you can rest assured that something will continue to strike me as ‘funny’ in the  everyday saga and I hope you’ll be there to share those moments.

All the world’s a stage,  And all the men and women merely players: They have their exits and their entrances; And one man in his time plays many parts……………Shakespeare – As You Like It.

tears of anguish…………

I made Milo raise his arms above his head; poke out his tongue and say a few words; all appeared normal. Earlier he had lost control of his bowels and when I put him in the shower to clean him up, he had forgotten how to wash himself. When I was finally able to get him to the dining table to eat, he didn’t know what a knife and fork was for.  There was no doubt something was seriously wrong.
After calling his doctor to tell him what was going on, he advised me to immediately call 911; the doctor thought it could either be pneumonia or maybe a bladder infection.   A stroke was not mentioned.

The fire engines arrived complete with paramedics. Milo started joking with them. “Why did you call for help?” The handsome firemen quizzed. I felt embarrassed to think that they thought I had got them there under false pretensions.
Off to the local hospital in an ambulance, Milo continued to be his humorous self and on arrival the hospital staff parked their new patient in a hallway; we waited  hours for attention. The doctor on call finally agreed to admit Milo for observation after I insisted that there was something ‘not quite right’ with Milo.   The second day of ‘observation’ a MRI revealed a stroke.   And, yet, discharge happened the following day as the medical staff felt he was mobile enough to return home; after all, he had been able to walk the halls with a beautiful blonde on each arm to help him.   I now understand that it was my right, according to Medicare guide-lines, that I could have appealed this decision as I felt my husband was not well enough to come home.

It was a week later that the weary and sick man was again admitted to the same hospital; I was  beginning to know the paramedics by their first names.   It was late afternoon when we got to the local medical facility but the time was 1 a.m. when Milo was ‘legally’ admitted.   “I really feel he’s dehydrated, I told the nurse.  “No” she replied, “the blood work shows that he’s fine.”   Two days later, Milo had fluid dripping into his veins; dehydration had been the problem.

Milo was made comfortable in a large room that was clean and airy with plenty of natural light coming from a huge window that loomed over a sofa but the luxury didn’t end the pulsating suffering.   In an out-of-reach corner, a sterile white phone was sitting.  Prominently displayed on the wall was a cork board, a notice promised the patients comfort-need checks every two hours.

But, someone dropped the ball.   Just writing this makes me not only angry but extremely sad.   I discovered that Milo had not been getting his meals regularly.   I can hear you screaming your disbelief from here.   Apparently, as we later discovered from an aide, the patient was responsible for ordering his own meals by phoning his order to the kitchen.   We had not been made aware of this practice.  Milo could not read a menu let alone comprehend one, but he never complained and it was only by chance that I found out that he hadn’t been getting proper nourishment.   It’s not surprising that my husband appeared confused and disoriented .   How many meals he missed, I dread to think and, yes, of course, I followed up on it.

One should never assume things and must question every little thing when you’re responsible for a person, but while dealing with stress caused by health issues, it’s easy to sit back and rely on the so-called professionals.

Regarding the ‘promise’ displayed on the board.   Regretfully, and to my knowledge, Milo was not checked every two hours – at least not while I was in the room.   I also discovered that Milo’s teeth hadn’t been cleaned either, unfortunately,  I hadn’t thought to look in his mouth and it was a while before I noticed that a tooth-brush and paste was missing.   My husband was also complaining of a sore tail bone and the nurse on duty assured me that pillows would be placed around him to relieve pressure; several times I had remind the staff of this need.

On the day of discharge, I helped Milo to the commode as no one answered his ‘help’ call, it was then that I discovered a tear on his hip and a sore on his stomach; he told me that his tail bone still hurt.  Now beside myself with disbelief, I found the ward’s head nurse and lodged another complaint about the lack of meals and care etc.   Summoned, a nurses’ aide appeared and she informed us all that the instructions on her computer said that Milo was capable of ordering his own meals, but on the nurses’ computer their orders regarding Milo’s care apparently contradicted the Aide’s excuses.   I hope she has since been fired for dereliction of duty and lying.   An explanation about the sores and hip tear was not offered.

An ambulance took Milo to an in-patient rehabilitation center where he would undergo extensive physical therapy.   At this rehab, I let the admitting nurse know about the lack of care at the last facility.  To protect themselves from any law-suits and to my husband’s humiliation, the nurse had to take photos of the offending problems.    To check the anus sore, the nurse had to pry open that poor man’s buttocks for evidence and there, stuck between his cheeks, was dried-up excrement.   The heart-ache I felt for my husband was indescribable and still is.

Forgiveness is still hard to find – as is my feeling of guilt that somehow I was responsible for Milo’s misery.   However, I am my husband’s advocate.   As soon as I returned to my home that agonizing  day, I lodged a formal complaint with the Director of Risk Management at the hospital. And, later that evening, the Head Nurse of this huge medical facility phoned an apology.  To my relief, several nurses were able to substantiate my grievances.

I let several weeks lapse until Milo was safely back home before I followed up on my phone call to the Risk Management Director.   She assured me that many changes had occurred and that she had personally spent a week in the ward during the day to make sure that the staff was aware of the  changes made for in-patient care.   The Head Nurse handled the night shift.

I have to assume that the hospital is telling me the truth and, hopefully, I have made life a little better for those in that infirmary and just maybe I have helped protect those whom do not have an advocate.

Strangely, it took courage for me to contact the authorities but knew I had no choice as I couldn’t stay on the side-lines; it was my duty to be involved.     I stirred up a hornet’s nest and looking back upon this saga, I know that it was the least I could do.

One fire burns out another’s burning, One pain is lessen’d by another’s anguish. Shakespeare – Romeo and Juliet.

A comedy of errors…………..

                                         

  Shirley (in blue) and me battling gale-force winds on Prince Edward Island.                                        

“We need to go on a vacation.”   Milo, my husband, sounded like the proverbial squeaky wheel.   “I think we should take a cruise and visit China.”   O.K. I thought, I can understand the need to get away from being held hostage in our home…but…China?

I looked at various travel catalogues and decided the price was not realistic and the thought of being caught mid-ocean with another emergency episode was not at all appealing, at least to my way of thinking.

“Fly back from Singapore.”  My son, Paul, suggested.   I countered, “The cost is  exorbitant, and, how would I get Milo into the toilet facilities en route?”

After a lot of decision-making and knowing that a vacation for Milo would do him a lot of good, I compromised.   We decided to board one of Holland America’s ships and view the fall colors on the east coast of the U.S.A. and Canada.   My friend, Shirley, decided to join us.

Our new adventure was to start at the end of September 2011; I should have known better; the newspaper headlines warned the readers about the hurricanes forming.

We finally made it to New York from California after touching down in Cleveland, Ohio for refueling due to storms.   We were three hours late getting to our destination but Holland America’s agent was still  waiting for us;  however, the transfer agent kept insisting that we were already at the hotel.   It took us over an hour to convince him that we were not apparitions.

The following day, we boarded the ship; the cabin was large and adequate for the disabled.   Milo fell out of bed the night of boarding; it was to be the first of three falls.  A few nights later, the ship heaved and its roll barely discernible but my husband lost his balance and decided to inspect  the shower floor; bruising ran the length of his arm and attention was rife.   There is no doubt that Milo loves  being in the lime-light so in Gloucester he decided that he needed yet more attention.   His scooter fell over –  with him still on it as he tried to escape from his caregiver; he didn’t see the curbing ahead.   Cars screeched to a halt and people emerged from the shadows to help; Milo was unscathed.

By then we were getting more attention than I am used to.   In the cabin that night the curtains kept opening and shutting and the lights were going on and off.   Finally the telephone rang at 1 a.m.   “Do you need help, Mrs. Sieve?”   I could hear a kind voice querying   “you dialed the emergency number.”  The convenience gadgets next to Milo’s bed had all been pushed; explanations were in order.   Milo, engineer that he is, wanted to know what the buttons were for; obviously, we both found out.

The U.S.A’s east coast is stunning.   However, it was hurricane season and the storms seemed to be following us; we missed Sydney all together due to gale-force winds but managed to port in Halifax, Nova Scotia.   It’s a quaint town filled with tourists and hopeful shop owners; here, I bought a ‘fascinator’ creation that I placed on my head that evening.   I did get some peculiar looks, but I figured that if the English royals could get away with wearing strange-looking objects on their heads, then so could I.   Looking back on the photo taken that night, the piece of art on my head looked something like a feather duster; it obviously has a dual purpose.

When the ship reached Saguenay, Canada, the autumn colors were still avoiding us but we did see one pathetic tree with a few leaves clinging to it and they were changing color; the storms had all but stripped the coastal trees bare.

But before we knew it, our vacation was at an end; ten days of violent storms and unfortunate incidences, but there were was much laughter and good company;   food was excellent too.

We arrived at Quebec City Airport at 7 a.m. fully expecting to board within a short time but unfortunately United Air was on strike; the pilots and attendants wanted to spend their Canadian Thanksgiving at home.   The desk clerk scrambled to help us wend our way home.   Kindly, Canadian Air held up the flight  to Ottawa for us and we painfully made our way up the ramp to board; the other passengers were not amused.   As we flew inland I gazed out of the window and there below us, in miniature, were the elusive colors, their hues practically blinding us with their brilliance.

By the time we were ready to join the flight to Chicago from Ottawa, Milo’s shoes had adhered to his feet and the poor man’s ankles, although encased in strangle-tight stockings, were hanging over the shoes.  Thankfully, the powers-that-be swabbed his shoes to make sure we were bomb-free but for security reasons I was put through a screen booth; I bet that was not a pretty sight to the on-looker.

Did I mention the toilet adventures on board the planes?   I don’t know much about the so-called mile-high experiences of passengers, but I do know that it’s extremely difficult to get two people into one of those facilities.   I pushed Milo into the tiny compartment and hoped for the best.  Periodically I would open the door to check him; our performance was viewed with great interest and I was happy to relieve the boredom of others.

As I look back on that particular adventure, it’s something like child-birth; one remembers how painful it was but one also hopes that the memory of intense pain will ease.  And I am more than sure that my memory will prove to be short.

Travel makes a wise man better, but a fool worse.  Scottish proverb.

A purple door…………..

I love my house.   I have painted the front door purple and have two matching rocking chairs sitting close-by on the porch.   Milo, my husband, and Rider, my dog, love to sit outside and watch the world go by.   The color purple brings me joy.   My city-sized garden also brings me joy and I like to think it as being my gift to the neighborhood.   Masses of pink roses bloom practically year-long in California and the hummingbirds hover as their long beaks seek the flowers’ nectar.   Butterflies reward us by showing off their beauty as they flutter around the lavender buds.   A perfectly shaped magnolia tree graces the center of the landscape, its full white blooms balance majestically among the deep green leaves; from its high branches, a mocking-bird sings to us.   Sitting like Whistler’s mother at my bay window, I gaze at the beauty that unfolds before me.   In the Spring, a host of daffodils lift their heads toward the sun and now Summer is upon us, my grandson, Justin, and I planted Impatiens to bring yet more color into our lives.   The balmy evenings are filled with the heady perfume of the nearby jasmine bushes.   An old saying tells us that ‘one cannot improve on nature’; how true.

As I step inside my house, a visitor will note that I have had to change the decor somewhat.   It now accommodates a person with a disability and special furniture and conveniences abound.   Below I have listed some items that I have found most helpful for Milo’s day-to-day living.

In the bathroom I now have safety grab-bars next to the toilet and in the shower stall.  I find that the suction-type grabbers are handy too, but you must have a smooth surface to enable them to work, and it’s important that you check them before use as the suction cups sometimes fail.   I have installed a  ‘handicap’ toilet and have increased the seat height by 5″ with a one-piece plastic molding.  It makes it easier for Milo to sit down.   Inside the shower stall is a commode-type chair and the shower head is on a flexible hose with an off-on button; this makes for easier washing.   Also in this particular room are other odd things that help us.   A stack of plastic bags; these I use to put on Milo’s feet and I have found they ease the slide of his compression stockings on to his legs.   I also use talcum powder to help with this struggle.  There is a ‘sock aid’ available, however, I find my particular ideas easier.  Propped up in the corner is a  12″ long shoe-horn and a ‘Handi-Reacher’; these items ease painful bending – for me.

Milo now has an adjustable bed.   I can raise both the head and the feet, however, when my husband begins to adjust his own sleeping arrangement, I often find him caught up in a taco-looking position.   Funny to look at, but most uncomfortable to sleep in.   Under the mattress there is a board and attached to it is a bed rail with storage compartments.   Also in his bedroom is a recliner that has an electric lifting mechanism that will raise him to a standing place; it is not fast enough to eject a person.   My son manufactured a platform I designed to aid Milo when getting into his bed.  It is long and wide enough for Milo to turn around on while holding on to an attached bar; it raises him just enough to allow him to get into bed without much assistance from me.

Under the dining room table, I have placed a plastic mat that is usually used in an office to protect the floors.   I have found that a chair, with Milo on it, slides easily on the slick surface.   It also helps to keep the rug clean.

Metal grab-bars have also been attached to the walls where there are challenging steps to manage.  Ramps will probably be put into use before too long and there is a huge range available, some of them can be folded and are compact enough to place in a car.

The ‘Rollator’ walker Milo uses has a padded seat that flips up; personally this actual unit frustrates me greatly as it’s difficult to collapse and place in the car and equally difficult to open.  The frame that Medicare provides is easier to use, however, it does not have a seat and several times I have found it necessary to use this added convenience for Milo’s emergency situations.

Milo insisted on buying a wheelchair with huge wheels – he thought he could help me by turning them himself.   It is cumbersome and extremely heavy; my advice to you is to not let the patient dictate to you, the caregiver, and to do what is easiest for you.  Medicare offer a ‘transport’ wheelchair that is light and easy to manoeuvre and allows you to rent it – free of charge.   Incidentally, your local electric company, such as Edison, offer reduced fees for energy use, however, a prescription is necessary from your doctor for this perk.

These are a few suggestions to mull over and I hope they are of interest to you.   And, for your information, there are online special-need product companies; one of them is http://www.sammonspreston.com .

It is time for me to return to my back yard.   String beans, cucumbers, musk melons and a variety of herbs are calling to me to be planted.   I will plunge my fingers into the rich soil and trust that the toil of my labor produces a bounty that is worth sharing.   Gardening is good for my soul.

The kiss of the sun for pardon, The song of the birds for mirth, One is nearer God’s Heart in a garden Than anywhere else on earth.   God’s Garden: Dorothy F. Gurney, English poetess.

thankful…….

The old adage goes something like this:   ‘you can choose your friends but not your family.’   Fortunately, I have  both friends and family who are fantastic.  I come from a large brood and although we decided to go our own separate ways to all four corners of the world, we are still close and I get support from them all.   They urge me to ‘keep a stiff upper lip’, it’s too bad that my upper lip is rather cracked these days.   While I’m at it and to be ‘politically correct, I don’t want to forget our children and grand-children who care about us and are always on call.

But I digress.   I want to speak of my friends and not my relatives.   Oh boy, what a diverse group of friends they are and I consider them all ‘close’; my life would be empty without them.

I still stay in touch with a friend in England; we went to school together in the dark ages.   However, and I reiterate, this posting is not about my family or this particular friend; it is about the people who surround me every day of my life.

I am so very lucky to have many friends here in the U.S.A.; all precious and every one of them fill a need.   I really can’t imagine a life without them there to ‘dump’ on, and probably the pit I sometimes find myself in would be much deeper.   Isn’t it odd that you can tell a friend certain things  that you wouldn’t  dream of telling  your  family?   I sometimes feel that kids think I’m dead from the neck down – I’m not.   Even in my advanced years, I would like to think I’m still an attractive and vibrant woman; I’m glad that my older friends’ eyes are fading like mine and that they also find their hearing challenged.

I also feel that I wear a different face for each person.  Think about it.   Could it be that we’re always on stage and that we’re not whom we think we are?   People we come in contact with form them own opinions of us – right or wrong.   It certainly makes life more interesting.

Laughter is brought to me by friends; humor is so very healing.  They allow me to vent and whine; this helps in so many ways.   I’m sure they get fed up with my whining so I do try to avoid it as much as possible.   Incidentally, I prefer to have my w(h)ine in a glass.

Warts and all, friends accept me for who I am, and this includes my warped sense of humor.

My male buddies are great too and continue to treat Milo just the same as they did in the days before he fell sick and thankfully the teasing and off-color jokes continue.      After all, Milo’s still the same man under the skin; he just acts differently now and our friends make him feel ‘normal’.

Friends encourage me to get out and treat myself to massages or buy tickets to the theatre.   When we get together, we have long conversations that include the meeting of the minds – without dwelling on health or care-giving issues.   It makes me feel less dull.   My spiritual healers suggest I be compassionate to myself; I find this hard to do but know that it’s important for a person’s well-being.     If we cannot be kind to ourselves, how can we be kind to others?   I use that line often to relieve my feelings of guilt.   Why do we beat ourselves up all the time?

When I walk my dog, Rider, I meet my neighbors and find that they too are an important part of my life; it gives me a feeling of community.   I love playing a role in the neighborhood.   I also discover that around every corner there is someone who is suffering far more than Milo and it makes me feel relieved that he  is doing relatively well – considering.  There is always someone who has a lot more to deal with in their lives and I have a lot of compassion for them.  It makes me feel thankful for every small mercy thrown our way.

I attended my grand-daughter’s high school graduation party on Saturday.  It was wonderful to see this beautiful and intelligent young woman, Sydney, surrounded by her friends and family.  At the gathering were friends of mine, they were a part of my family while they were growing up.   They are my sons’ ages but I consider them my friends too.   That day, they brought back so many memories and there was so much laughter; they reminded me of another time, another place.  They recalled many stories and one was when I threw a potato at my son, Philip, and one of his cronies; they were misbehaving.   Legend now has it that potato throwing was a daily occurrence – it only happened once.   I want to assure you that I did miss my target – they ducked.   Afterwards, to add insult to injury, I made them wash the wall where the potato hit and splattered.  When the time comes I know that some of the stories of their youth will be a part of my eulogy.   I hope that I can tune in and listen as I know there will be much hilarity.

So, as you can see, I have friends of all ages; they make me feel alive and young again; they’re better than a pill.

Many thanks go to all for helping me stay sane and, pretty much, contented with my lot.  There is no doubt in my mind that I would be in a huge heap of trouble if you weren’t out there.

Friendships multiply joys and divide griefs.  However: Friends are like fiddle-strings, they must not be screwed too tight.  Proverbs.

fear………..

My heart is pounding, and my mouth is dry.  The palms of my hands are sweaty.

Throwing Rider, our dog, into the back of my car, I ready myself.   Decision time is here.

The drive is short; only one traffic light to contend with and the walk back is easy and Rider will get a little exercise, even though it’s not as long as his usual jaunt.

I have always relied on my husband, Milo, to make decisions when it comes to car maintenance.   Now I’m a virtual widow I am determined to bite the bullet and buy new tires.  However, I must rely on the expertise of others, trust those whom know a lot more than I and keep my fingers crossed.  My car is now six years old and I have never changed the tires however, it has always been kept in the garage away from extremes of weather.

The cost of replacement is horrific but for the sake of safety, I know I must do the right thing.

“Actually, your tires look o.k. Madam.”   The young mechanic tells me.  “But, if you do look closely, you will see that there are cracks starting to form.”   I don’t see any cracks; my eyesight is failing.   “Your car is an older model but I really feel you should replace all four tires.   Your brakes need checking too while we have your car here.”   He’s a polite young man.

Walking back home I ponder my dilemma.   There are many other women in the same boat as I.   When a person has to make decisions on one’s own, we have to take a step back and realize that not everyone is ‘out to get us’.   Unfortunately, in this day and age I believe we have all become paranoid.

The phone rings.   “Hello” I say tentatively.  “I have your estimate, Mrs. Sieve.”  The courteous young man tells me.   “Your brakes are fine, however, I do feel you should replace all four tires.”   He continued to tell me that there is a ‘special deal’ running on tires and that I could get a rebate for the cost of one tire.  He also recommended an alignment which would make the estimate even higher – much higher.

I only have 38,000 miles on my car, but I went ahead and bought tires that have a warranty for 50,000 miles and are manufactured in the U.S.A.   They will  probably outlive me.   I also let them include the alignment.

My palms feel dry again, my heart is not pounding and I will get a rebate for over $100 on a Visa card.    Did I make the right decision?   I really can’t tell you, but at least I made another step forward to self-reliance.

Now to have a smog check for the re-registering of the car; I’m on a roll, and, I’m feeling rather pleased with myself.

A complicated patient…………

A doctor once told me that ‘Milo is a complicated patient.’   He is right.

When I think of the last eight years and what Milo has gone through,  I often wonder what he will have to deal with next and as you can imagine, it’s a constant concern.

If you have followed my blog, you will know that Milo has had brain surgery; it was a surgical miracle that saved his life in Turkey.   You may also be aware of his Parkinson’s disorder.   My husband also had open heart surgery in 2006 – this resulted in a staph infection in his thigh where the surgeons took a vein.    There is no doubt that our social life has been hospital driven.   Please don’t feel sorry for us, we have lived a full life with memories few people have experienced; I may bore you with our travel adventures another time.

Writing this blog is a therapy for me and as I don’t face the people whom read this ongoing saga, I feel bold in the revealing of yet another health problem; one that plagues Milo daily.   So please bear with me, venting is good for my soul.

Milo also has a genetic condition called  ‘Factor V Leiden’.   Often this ailment is one that doctors and nurses are not familiar with, so, when I haul my husband off to the E.R. in the hospitals or to a new doctor, invariably they do not know what I am talking about.   Over the years I have found that I have become quite knowledgeable when it comes to Milo’s medical issues; perhaps I should have been a doctor and not a writer, but even in my dotage,  I tell myself that ‘it’s never too late’.

One of the web sites that I refer to is Mayo Clinic* and they say that Factor V Leiden is a ‘common inherited genetic disorder that can increase your chance of developing abnormal blood clots (thrombophilia), usually in your veins.’  Unfortunately, claiming that some disorder is ‘genetic’ means that there’s a possibility that it could be passed down to one’s progeny.   Milo’s youngest son, Mark, died at the age of 41.  Family history of factor V Leiden is most common in people who are white and of European descent; usually northern Europe.

To keep his blood thin, Milo is taking a drug called Warfarin.  It is an anticoagulant.   Checking of his blood regularly is a must  to make sure it is capable of clotting to stop bleeding; hence we have a monthly trip to the laboratory.   As you can imagine, one of my greatest fears is that Milo will fall and hit his head.   Bleeding in the brain could be fatal.

It is highly recommended that people with clotting issues use compression stockings to keep the blood moving in the legs.   As an aside, you can now buy these stockings in rolls which you can cut to any length; I have a good supply on hand.

When I started dating Milo, I tell people that he checked out my teeth and muscles to see if  I was a healthy specimen; obviously I was.   Of course I’m joking.   A person these days can ‘Google’  the background of about anybody in whom you’re interested.   Gleaned information could be very interesting and, maybe, even life-saving.   Perhaps it would also behoove us to check the DNA of would-be spouses as well; it may save a lot of pain and anguish.   But even if we did all the research I have suggested, there is no doubt in my mind that love conquers all.

Blood is thicker than water. (= Relationship is a strong bond.)  19th cent. proverb.

*My continued thanks to the Mayo Clinic website.

A ‘brief’ synopsis……..

As promised, here is a story about ‘diapers’; also, as promised, it’ll be a ‘brief’ synopsis.

We’ve all used them at one time or another and even some owners of animals have found them useful.   According to ‘Wikipedia’, the online and free encyclopedia, a ‘nappy’, or, ‘diaper’ is a kind of underwear that allows one to defecate or urinate on oneself discreetly.   Adults whom have to use this type of underwear for medical reasons find them humiliating and embarrassing.   Unfortunately, diapers are a necessary evil.

For those of us trying to be environmentally correct, we feel that washing cloth diapers is perhaps the best way to go and to not aggravate the already full land-fills.   When I had my children, Paul and Philip, in England, I would boil cloth nappies in a bucket; the odor was not pleasant.   Having no clothes dryer, I would then hang the offending pieces of material on a clothes line – no matter the weather.   During winter, I would bring the nappies inside, still frozen solid, and re-hang them in the kitchen; why I went through all these motions, I don’t know.   Obviously, I was a slow learner.

For the care-giver, there is no doubt that disposable diapers are the way to go and  we can only hope that the materials used for them are biodegradable.

Caring for an invalid is expensive and one must factor in the mounting costs of all health needs for the infirm.

How then, can one cut the cost of this most necessary item?   One can hunt for discount coupons or buy in bulk at places such as Costco; I do both.   I also place pads inside the diaper and change them as needed; they are less expensive than full briefs.   At night, I place two diapers on my husband, Milo, plus one pad – and – paper towels to aid in the blocking of leakage.   Milo also sleeps on a large protective pad placed over the sheet; this saves constant washing of sheets.  Due to problems such as yeast infections, I don’t like to use plastic cover-ups over the diapers.   Of course, one can return to days of yore and cut the environmental impact by washing soiled diapers with as little water as possible and then line-dry them.   But for the caregiver, that’s a lot of work and, sadly, unpleasant odors can linger.   There are plastic-lined underpants with pockets for pads,  and there are also latex catheter sheaths.   For Milo personally, I feel that they are both inadequate.

Perhaps the manufacturer of  ‘Depends’, or others of the same ilk, should design a diaper that would meet the demands of people in the same situation as my husband.   If they did make a better urine-trap, especially as the ‘boomer generation’ will be soon needing them, they would make millions of dollars.   Maybe I would get commission for the idea which would then help pay for some of the diapers my husband now needs.

When it comes to incontinence there’s no doubt that it’s a catch-22 situation and unfortunately one can only learn through trial and error on how to deal with this unsavory issue; let’s hope that in time a better solution will be found.

Another bear the ewer, the third a diaper.  Shakespeare.  The Taming of the Shrew.

Parkinson’s disease dance

It was the shuffle i noticed first followed by a peculiar-type dance as though Milo’s  shoes had sticky stuff on them.   My husband would also stare at me with no expression on his face and it became obvious to me that it was not due to my beauty.   His speech sounded as if he had been drinking scotch all day and unfortunately his voice became more and more slurred and difficult to understand.   But when Milo’s signature developed into a tiny scrawl causing it to become practically indecipherable, I knew it was time to question his decline.

Dr. X. had been correct in his diagnosis.   Milo had Parkinson’s Disease.

According to the Mayo Clinic, ‘Parkinson’s disease is a progressive disorder of the nervous system that affects your movement; the symptoms worsen as the condition progresses over time’.   Michael Fox, the actor, has the disease.

Personally, I am convinced that Milo’s Parkinson’s began when he had his brain tumor removed.  One often sees boxers and other athletes suffering with this sad condition after encountering severe blows to the head.  Parents need to bear this in mind when they allow their children to play contact sports.

The Mayo Clinic also say that ‘researchers have identified specific genetic mutations but it is uncommon’.  However, they also feel exposure to certain toxins or environmental factors increase the risk of Parkinson’s.   Milo was often exposed to pesticides while farming as a child and then again exposed to asbestos, a commonly used additive to cement used by building contractors many years ago.    But sadly, it is obvious that not even the experts are certain what causes the disorder.

The prescribed medication that Milo takes for Parkinson’s has, so far, been successful.   It is ‘Carbidopa-levodopa’; a natural chemical that passes into the brain and then converted to ‘dopamine’.   However, over time, the initial benefits derived from Levodopa may lessen and eventually ‘wear-off’ making it necessary to increase the dosage.   An unfortunate side effect of this drug is a nasty drop in blood pressure when first standing, consequently Milo has fallen several times and the fear of his hitting his head is always upper-most in my mind.   As he also takes the drug ‘warfarin’, a blood thinner, it makes the apprehension even greater.   Hallucinations, of which Milo has had many, are another side effect of Carbidopa-levodopa and,  if one is unprepared for them, they are rather frightening for both the patient and the caregiver.   Stories of ghosts come to mind.

Another problem P.D. patients suffer from is incontinence.

I wish we had bought shares in the companies whom manufacture incontinence aids.   I find that when I shop at Costco, I practically need a trailer to haul home boxes of Depends, the adult diapers.   This dreadful disease is so humiliating for Milo and others like him.   When one is dealing with wet beds and unsavory odors and the need for strong counter-acting solutions for smells, it is no wonder that we caregivers sometimes sink into a pit of despair.

For relief, my next posting will be all about ‘diapers’ – or – ‘nappies’ as they are usually called in England.  You may rest assured that the posting will be brief………

The doctors recommend a balanced diet full of fruits and vegetables with plenty of water; dehydration is a real bug-a-boo to deal with, especially when there are incontinence issues as it’s very difficult for a person with P.D.  to walk to the bathroom.   Omega-3 fatty acids are also recommended.   Last, but not least, research has found that caffeine may reduce the risk of developing P.D.   Your daily stop at Starbucks may prove to be a good insurance!

I really appreciate Mayo Clinic’s explanation of this nasty disease and I have passed on to you information from their web-site to aid you in the understanding of this ailment.

Health is  not valued until sickness comes.  Scottish proverb.

a friend indeed………..

A four-legged friend walked through our door and into our hearts in 2006.    Rider, a beautiful golden Labrador, was a year old and angry when his master, our son Andrew, received orders to fulfill his military duties.   Andrew asked if we would be willing to be responsible for the caring of his dog.

This beautiful animal was dubious of his new life in a different environment and  apparently he was unsure of his obligations so he decided that as we were a lot older than his first master we would need protection.   Every opportunity he got he would rush out of the house and chase our neighbors or try to punish the mailman for leaving bills.   They were not amused.

But before too long, Rider started to settle in.   I took him for walks, played ball and fed this 105 lb animal until he felt safe and at ease with us.   It got to the point when Rider obviously thought he should repay us in some way.   This intelligent dog started to follow Milo and me around the house looking for something constructive to do.

After a few months living with us, Rider started to sit outside the bathroom door while Milo was attending to his toiletries.   ‘When Milo needed help, the dog would come and find me and just look at me until I followed him.

When Milo has a particularly bad day, this self-taught service dog always sits by his side to keep him company.   When Milo is feeling able, he loves to take his walker into the back yard to check out the roses and at all times Rider is alert and on duty. He now knows he is a permanent part of his new family and that his help is necessary.

One day, the inevitable happened.   Milo fell while outside.   Rider started barking.   At first I just ignored the commotion thinking that a spunky cat was teasing Rider from the branches of an avocado tree.  But the animal’s loud yaps finally caught my attention; there was something wrong.   I discovered Milo face-down on the ground, he had tripped and fallen.   I couldn’t move the hefty old man and ran to get some neighbor help.   Protecting his master, Rider stayed close-by.  Fortunately Milo didn’t suffer any serious injury, there were no bones broken but under Milo’s eye a huge apple-sized lump appeared.   Rider, like his first master, Andrew,  knows that duty is his first obligation and time and again this faithful animal has alerted me when all’s not well with Milo.

There would be such a huge hole in our home without our faithful companion, however when I don’t answer the phone in ample time, or fix our dinner early enough to our dog’s liking, I sometimes wonder who the master really is.    A lot of time and effort has been put into training and there is no doubt that it has worked well.   I find that I become more obedient by the day; Rider has done his work well.

The one absolutely unselfish friend that man can have in this selfish world, the one that never deserts him, the one that never proves ungrateful or treacherous, is his dog.  A man’s dog stands by him in prosperity and in poverty, in health and in sickness.  – Geo. Graham Vest.  Eulogy on the Dog.

fired…………..

Have you ever fired your doctor?

I remember in the past how many of us would place our doctor on a pedestal.   I toppled one of Milo’s neurologists back in 2009; I guess it took me long enough to realize that he was incompetent, however I really did think he knew what he was doing.   After all, our primary doctor had made the recommended referral when we returned from our adventure in Turkey.   (See first postings.)

The given referral practiced in a glass-walled corner office on the top floor of a high-rise building; to my way of thinking, and from all appearances, he was hugely successful, and therefore must have been brilliant.   Dr. X was handsome too.

First of all, this doctor prescribed a lethal dose of Dilantin; after all, Milo had one seizure due to a brain tumor; fool that I was, I trusted the man’s reasoning.   Dr. X diagnosed Milo as having Parkinsons’ Disease but later he stated arbitrarily that my husband also had diabetes and neuropathy – this he did without any tests being made.   I knew then that the time had come to move on; especially as Milo’s primary doctor had tested Milo for diabetes the prior week when the results were negative.    I had obviously waited too long before moving on and should have followed my first instincts.

The new neurologist, Dr. H., took my husband off the toxic drug Dilantin.   It had awful side effects one was discoloration and rotting of his teeth and another was involuntary eye movements plus blurry vision.   Dr. H. also took Milo off the Stalevo for Parkinsons’ Disease when he discovered that Milo had skin cancer and a heart condition – and the intense urge to buy big-screen television sets for every room in the house.   In fact, Dr. H. halted all medications while conducting tests  and a true identification of Milo’s disease.   Unfortunately the diagnosis of Parkinsons’ Disease was correct.    And, thankfully, since the first seizure, Milo has not suffered through another.

It sickens me to think that Dr. X put Milo – and me – through such unnecessary mental agony.   The four years of  incorrect drugs poisoning Milo’s system horrifies me; and did I mention the doctor’s arrogance?   I did think of reporting Dr. X to the medical board but after my letter to him with a list of reasons about why we decided to seek another opinion, I hoped the wake-up call would encourage him to take more time, and care, with his other patients.   And, frankly, I just couldn’t afford to put even more stress into our lives.

Never, ever, be afraid to question your doctors; they are human just like you and me.   Always check the side effects of drugs; your local pharmacist will help you with all medication information.   It also helps if you buy all your drugs at one pharmacy where all your records are kept.   Hard as it is, try to anticipate stressful situations and prepare for them.

‘Make yourself all honey and the flies will devour you.’   Italian proverb.