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…..