Alzheimer's

A ROAD TRIP WITH ALZHEIMER’S

Southwest desert scene

With Alzheimer’s, traveling through the desolate parts of Nevada wasn’t as easy on the return trip with only me as the helper. I missed Jayne’s help. Photo courtesy Creative Commons

 

 

 

TO GO OR NOT TO GO

October 15, 2014Traveling with older people, especially those who have a dementia is almost like traveling with small children. If the companion is older and still has most of their cognitive awareness and other learned skills, it can be an enjoyable trip. However a long automobile trip can be difficult for all concerned when Alzheimer’s disease is part of the package and can prove to be more challenging than anticipated. Our friend, Jayne had asked me to drive her with a good portion of her household kitchen and office necessities to Salt Lake City where she would be serving a mission for our church working in the genealogy research library.

We packed the pickup with her needed belongings covered with a tarp held securely in place with crisscrossed bungy cords. When it came time for us to squeeze the three of us into the front seat Ken suddenly decided he couldn’t go because he had too much responsibility at home. Obviously, he was feeling the ravages of his Alzheimer’s. It took a few minutes of coaxing, bribing, pleading and using any viable persuasive means I could think of to get him to take his place in the truck, and finally we were off and away with only 800 miles to go.

PICNIC AT A REST STOP

I had packed a lunch in a small ice chest so we could pull into one of the rest stops scattered throughout the states, and not only enjoy the rest, use the facilities, but take a walk and get some needed exercise, especially Ken. Like children older people with dementia can become confused and lost if not watched closely. He found the men’s room with no problem, but was confused when he came out. We watched him for a while before I joined him and brought him back to where we were waiting.

THE FIRST NIGHT

He was fine when we stopped at a motel for the night and didn’t mind not being in his own bed. The added benefit of the trip, which kept him encouraged, was that we would also be spending a few days with our daughter and her family who were living in Ogden. We unpacked, helped Jayne settle into her new place and then drove north to Ogden. Ken still recognized his oldest child and was happy to see her. The next day we all visited the Railroad Museum.

History buffs might remember that it was above Ogden in 1869 where the golden spike linked the railroad at Promontory Point connecting the east with the west. From that date on travelers could travel from coast to coast by rail. Ogden was the railroad hub in that area for many years. Now the station and buildings have been converted into a Railroad Museum. Ken did enjoy the day as he had worked for Santa Fe as a young man

THE RETURN TRIP

After a few days we were ready to return home. I found it much more difficult without Jayne. I couldn’t take him with me into the Ladies’ room and he was a bit fearful about waiting for me alone. Furthermore, at the motel he wasn’t as comfortable as he had been the week before. Instead of flopping down on the bed to watch TV, he wandered around the room asking why we were there. Constantly, he pleaded, “Let’s go. I’m ready to go right now, and if you aren’t coming I’ll go alone.” When I asked where he planned to go he told me that he would go out and look for a bus station, and he left.

Hot on his heels we walked down the sidewalk of the small Nevada city. He seemed content to walk. At least he was doing something and not just sitting in the motel. I suppose that satisfied him for a time. During our conversation I tried to remind him of who we were and why we were there and that tomorrow as soon as the sun came up we would be on our way home. To further encourage him to get a grip, I went into a casino. Watching him from behind a corner he appeared to be taking in the scenery, but continued to look around as if he were looking for someone: me or anyone familiar. I stayed out of sight for a few minutes just watching him. Eventually I stepped forward and said, “Hi.” “Where have you been,” he chided me.“I’ve been looking for you.” Once again we had recognition. I felt relieved. Slipping my arm in his I said, “Let’s go back to the motel.” Quietly he came along with no more references to taking Greyhound home. With me promising that we would be on our way first thing in the morning he agreed to get in bed where he slept the night through with no problems.

DECISIONS, DECISIONS

So, with the question being, “To go or not to go?” I discovered quickly the prudent thing about travel. It is just too difficult when there are only the two of you. People who are confused and are afflicted with any of the dementia diseases don’t do all that well when facing the unfamiliar circumstances that comes with travel. Even having two helpers the patient is much happier at home in their own surroundings. A short trip close by, such as the park for a change in scenery is a better experience for all concerned. Perhaps if traveling is a must it’s best to fly which we did when we visited the family during the Holidays.

 

COMMENTS BELOW ARE WELCOME.

Originally posted 2015-10-17 05:15:29.

CAUSE OF DEATH? ALZHEIMER’S!

This gallery contains 1 photo.

WHAT DO YOU CALL THE CAUSE OF DEATH OF SOMEONE WITH ALZHEIMER’S?

Synonyms of Alzheimer's and the disease spelled out.

The cause of death for someone with Alzheimer’s is often not listed as such.

February 27, 2015 – I know, that’s a misnomer. I know that AD is seldom listed on a death certificate as the cause of death. Complications from Alzheimer’s aren’t listed either. I am using these vague words because people who die after years of suffering from AD are listed as passing on for other reasons. Therefore, in my humble opinion, this terrible disease that is so devastating to so many doesn’t get the correct count as cause of death with the statistics listed by the CDC (Center for Disease Control). How can they possibly keep an accurate count of those afflicted with Alzheimer’s disease if it isn’t even listed as a contributing factor on the death certificate? Continue reading

Originally posted 2015-02-28 23:43:37.

SEXY FOOD AND VALENTINE’S DAY

Candle light and entwined hearts

A romantic dinner is much more in keeping with Valentine’s Day tradition than sexy food. (Image Creative Commons)

A WORD IS A WORD – SEXY

February 13,14,2015 – I watched a Valentine’s Day TV show the other day about sexy food. The participants were either chefs or invited good cooks. They all prepared so-called sexy dishes as a suggestion to the viewers for what might be served on day 14 of this month to anyone’s special person. Personally, I’ve never encountered sexy food, but I’ve often heard of certain foods being an aphrodisiac, such as lobster drizzled with butter or oysters on the half shell. I’ve eaten both, but found no special yearnings for either me or Ken to get a room following consumption. Continue reading

Originally posted 2015-02-14 20:49:22.

LOSING MY MRS THROUGH WIDOWHOOD

pen and signature

Changing my signature from Mrs. to Ms. is something I refuse to do.  I have been a Mrs. for most of my adult years, and I will not sign as Ms.  I am a Mrs. because in my heart I still am and will always be.

MISS TO MRS TO MS

December 5, 2014 – I suppose you could say, “Of course you were happier before Alzheimer’s. That statement could go without saying.” The entire world was happier before Alzheimer’s struck down a loved one. Apparently it isn’t going to stop. Its numbers are fast approaching epidemic.

Ken’s disease and ultimately his passing have caused a major change with me. Once a happily married woman: a Mrs. for most of my adult life is no longer who I am, at least according to society. Now I check a different box. Once a married woman I am now a widow, and that’s the box I now check.  Continue reading

Originally posted 2014-12-07 04:20:23.

GRATITUDE AFTER ALZHEIMER’S

This gallery contains 2 photos.

A LAST GOODBYE WOULD HAVE BEEN NICE

A family gathers for Thanksgiving dinner.

Some of our family gather for a day of gratitude and Thanksgiving at my daughter’s house.

 November 28, 2014 – So many things for which I feel gratitude. At the top of my list is that I have a lifetime of wonderful memories with Ken. I only wish that the selfish disease of Alzheimer’s had allowed my loving husband a momentary return to his old self just so he could have said goodbye to me and his children. I would have asked for just one chance where I could have said to him, “Thanks for 64 wonderful years, but then we all know that AD never gives anything back once it has robbed the mind of life and living. So I won’t dwell on what might have been and go on to a Thanksgiving long ago when the children were younger and we were on our way to Grandmother’s house. You know, “Over the bridge and across the bay to Grandmother’s house we go. The car knows the way.” And on that memorable night it was almost believable that the car knew the way.

THE NIGHT BEFORE

We always packed our clothes well ahead of departure for a long weekend in the country, and set out for Thanksgiving at “The Little Farm” located half way between the town of Sebastopol in Sonoma County, California and Bodega Bay on the ocean.  It was Wednesday evening as we headed north from our East Bay home for our annual holiday festivities. Continue reading

Originally posted 2014-11-30 02:58:09.

ALZHEIMERS AND END OF LIFE DECISIONS

Hands touching on a bed.

One of the hardest decisions I ever made, choosing care and comfort for my spouse.

A VISIT TO THE ER

October 26, 2014 – When do we actually make life decisions? It was many years ago when both Ken and I were younger and much healthier than we have been these past few months. A long time before either of us thought about a life-ending situation. We were new grandparents back then with decades ahead of us when we would watch this new generation grow and develop as they rebelled and struggled, as did their parents, before reaching adulthood.

DECISIONS FOR THE FUTURE

It was one of those evenings when either my heart was palpating or Ken was having a Crohn’s disease attact that we entered the ER of our HMO hospital explaining our need to see a doctor and be evaluated.

Taking the needed information the admitting nurse then asked,

“Have you filled our your Advance Directives?”

“No,” one of us replied. “What are Advance Directives?”

Within a few minutes she had covered all the information they would like to have on file which would state our wishes if we were unable to converse with authorities at some later date. She then slid the forms across the counter for us to take home and fill out.

It was one of the most  important life decisions one can make. But admittedly, this was not at the top of our “To do” list so they were placed with another stack of papers to do later.

TIME MARCHES ON

And it was later, much later when I ran across them as I was going through stacks of papers as we do periodically when cleaning and tossing, especially the office.

I briefly looked them over once again and said to Ken, “As much as we want to ignore this, it is wise to get it done so the hospital will have them on file. We just don’t know what the future has in store.”He agreed, even though neither of us planned on leaving the planet on the next bus.” Our discussion suddenly became serious as we perused each section discussed these important decisions.

“If I can’t have a quality life, then I don’t want any heroic measures taken to prolong my existence,” he said. On that we both agreed

TREATMENT

So if there are no breathing machines, what do we want them to do was the question at hand? Did we want life prolonged with a feeding tube? Did we want a possible bout of pneumonia reversed with a treatment of antibiotics? A UTI infection?

We both agreed that there would be no feeding tube, but backed down again when it came to treating pneumonia and other infections. It was then that Ken remembered what he had said following the funeral of his parents as each had succumbed to Alzheimer’s loosing all memories and just lying in bed waiting to die, but not knowing it. “I don’t want to end up like my parents,” he had declared with absolute finality.

FINAL ANSWER

So when the ER doctor asked, “Do you want us to treat him with antibodics for his infections?” which had already been put in place. With my son, Keith, nearby, I said, “Remove the antibodics.”

“We’ll get him a room, and change the instructions to “Care and comfort only,” the doctor said kindly.

Those were the most difficult words I have ever spoken, but remembering his words of years before,” and having witnessed his illness for what seemed forever I knew we had made the right decision. He had already lived with more than 14 years battling Alzheimer’s. Heal the infections and bring him back to face more of the same? Why?

ALLOWING IT TO END

Allowing him to go and not have to continue the terrible journey into the dark corners of the AD dungeon was my final act of loving this man who had been everything to me for nearly 65 years. How could I not let his spirit soar back to God who is our home?

Originally posted 2014-10-26 15:04:15.

DEATH FROM ALZHEIMER’S PART II

Death From Alzheimer’s Is Inevitable

Ken Romick, a person with Alzheimer's featured in this blog, died early this month.

Ken Romick, a person with Alzheimer’s featured in this blog, died early this month.

October 17, 2014 — By Deborah Schultz:  The death of my father from Alzheimer’s  was my first experience being around a dying person. Because I had spent time with him, his physical condition was not a shock. It was however difficult to see him, lying with his mouth open and his eyes shut. He was hooked to an IV with a morphine drip for pain and he seemed at peace.

The end result of Alzheimer’s is always death, though not from Alzheimer’s itself.  Dying at the end stage is natural as well as unavoidable. How and when that finally happens is as individual as the disease. Using heroic measures such as forced feeding, CPR or incubation only prolongs something that is inevitable. Doctors and other healthcare professionals recommend that the patient be made as comfortable as possible while allowing nature to take its course. This is called palliative care. This decision should be made as early as possible among all involved. Continue reading

Originally posted 2014-10-18 20:43:04.

DEATH AND DYING. THE FINAL EARTHLY GOOD-BYE

An Imminent Clue of Death and Dying

Naval guard at the burial site.

Death and dying, a Naval guard at the burial site.

October 10, 2014 — I got the first call about my father’s possible death on Monday, September 29, 2014.  The home nurse had stopped by for a visit that day. Her estimation was that the bed sores weren’t that bad and dad would be fine, but because of the constant pressure on the various parts of his body Dad would need to be turned every few hours. That afternoon he developed a fever, 100.4, he was having trouble breathing and hadn’t been eating well for the last few weeks. An ambulance took him to the hospital. It was routine they said, they would let me know. I am Ken Romick’s oldest daughter Deborah, and I live almost 900 miles away.

Tuesday was quiet and I thought, no news is good news. At 5:30 that late afternoon my sister called. The family would be meeting at 10:00 in the morning in my father’s hospital room to say their last good-byes. I took a direct flight leaving Salt Lake at 6:45 the following morning. Continue reading

Originally posted 2014-10-13 07:42:33.

CLEARING THE CONFUSION: ALZHEIMERS OR DEMENTIA

DEMENTIA – A STARTING POINT

Questions marks illustrate there is a difference between dementia and Alzheimer's.

Knowing the difference between dementia and Alzheimer’s, helps people understand the disease.

August 24, 2014 – What is dementia and how does it relate to Alzheimer’s? Years ago they said that he/she is getting senile, or he/she is entering into their second childhood. If a loved one became cross or cantankerous one might say, “He/she is having a moment of senile agitation.” Then an observer could quickly cut to the chase with “He/she is downright crazy.”

Over the years descriptive words and terms do change. It wasn’t political correctness that brought about the change from yesteryear, it was a more conclusive definition that brought the word dementia into use as the more descriptive and popular term to describe loss of cognitive reasoning. The explanation from one dictionary is “a condition of deteriorated mentality.” Continue reading

Originally posted 2014-08-24 16:54:42.

Does Alzheimer’s Grow On Your Family Tree?

ONE CENTURY PLUS

Dorothy Cernac sits with her cake during a celebration of her 100th birthday Sunday at the Mozart Restaurant & Lounge

COURTESY PHOTO/JOHN CERNAC Dorothy Cernac sits with her cake during a celebration of her 100th birthday Sunday at the Mozart Restaurant & Lounge. – Pueblo, CO

April 25 2014 – On Ken’s family tree, Aunt Dorothy is Ken’s aunt, his mother Rose’s younger sister. In fact, she is the baby of the family, the last of 14 children born to Pete and Mary Perse of Pueblo, Colorado. Dorothy still lives in the family home where she was born on April 6,1914. She does not have Alzheimer’s nor any cognitive loss. Her sister Rose had Alzheimer’s as did several of her brothers. Mother Mary lived into her late 80s with no signs of the dreaded disease. So it might be assumed the  disease must have had its beginning with Pete, which is still difficult to tell as he died of heart failure in his early 60s.

DISEASES ON THE FAMILY TREE

It just appears, at least to me, that some families are more subject to certain diseases that others: Diabetes seems to be prominent in some families, heart conditions in others, cancer in many and Alzheimer’s and various dementias in others.

SKIPPING GENERATIONS OR JUST HIT OR MISS

Shortly before Ken was diagnosed with AD even though there were signs of the ailment long before we went to a neurologist. I had asked our PC doctor, knowing that both of Ken’s parents had the disease, what were Ken’s chances. His answer was, “With such a vast gene pool for a fetus to pull from, there was no way of forecasting. Maybe yes, maybe no.” I suppose with Auntie Dorothy she was part of the hit or miss and the family tree from where her genetic makeup collected must have been free of the AD gene.

Dorothy was a bright young woman and made a career with Montgomery Wards as manager of the fashion department, retiring after 33 years of devoted service. Being the youngest in the family,she remained home, caring for her aging mother until her death.. She married widower John Cernac in her middle years and became step mom to his grown children, loving them as well as her newly acquired grandchildren.

A LIVING HISTORY

Dorothy has seen a hundred years of change in her lifetime recalling members of her family tree who were fighter pilots during WWII. She also commented on the natural growth of her city over the years. For her century of learning, the matriarch of the family passes along to her remaining family and friends some life advice including dealing with adversity and challenges such as Alzheimer’s — the family disease she didn’t inherit: “Be prepared to take the good with the bad.”

Originally posted 2014-04-26 17:00:27.

Sign-up For Our Newsletter

Sign-up for our free newsletter and receive expert tips from Ann Romick, a woman who has cared for 4 different family members with Alzheimer's over a span of 30 years. Be the first to get notification of her forthcoming book, Journey Into the Fog, based on her experiences.

We respect your email privacy

Email Marketing by AWeber