Alzheimer's and Dementia and How It Affects The Family
"I'm lost. I don't know where I am. Help me!"
"Dad? Dad is that you? Dad, tell me what you see. Look out your window and tell me what you see."
"I see a sign, it says a car lot." He gave her the name; she knew it. "Stay right there, Dad; I'm on my way!"
Thus did our journey into the world of Alzheimer's and Dementia begin. My wife's Father called at 9:00 AM last Friday, completely lost. The temperature was 6 degrees Fahrenheit at the time with the wind chill below zero. She called me at work and asked me to come home immediately. I rushed home to get her and we were off to find him.
In this manner we began our descent in to the medical world, the insurance world, and the Governmental world of bureaucratic nonsense that may well define the remainder of his life and the foreseeable future for us.
I made it home in record time. Picking her up and heading out, she filled me in on the few details she had. Her Mother had called earlier that morning, saying her Father had called her. She thought he was in her hometown which is some sixty miles north of us. She thought he sounded drunk and thought he was at a bar. He had not known were he was nor how he got there. He asked for Tina's cell number. Receiving it, he hung up. About an hour later, he called my wife. In the meantime, Tina had called his place of employment only to find he had not been working for possibly several months due to their concerns about him driving.
No one had told us a thing.
The first day was spent at the local Emergency Room finding out if he was healthy. It turned out he was physically fine, but his mental health was not. Tests and conversations showed gaping holes in his memory ranging from momentary to decades. He did not know where he was, how long he had been there, where he spent the night, or how he had arrived. He was able to carry on conversations so long as memory was not required to furnish details.
He was unable to remember simple words like dog and ball for as little as a minute when asked to repeat them back to the doctor. He repeatedly said and asked the same things, time and time again. But to one who did not know him, and he was able to converse without forced to remember, he seemed perfectly fine.
It is beyond heartbreaking to see this big, strong man, this man who has worked for close to sixty years non-stop, this bastion of health reduced to a mental shell of his former self.
But what is worse is the path we are being forced down while attempting to determine how best to care for him now and going forward. Roadblocks are appearing everywhere, ranging from insurance to financial to Veteran's Affairs. Confusing? Yes. Infuriating? Oh, yes!
Morally wrong? In every facet.
He has no cash to speak of after working all those years. He did not spend it; at least, not on himself. No, a someone has taken severe advantage of him and reduced his savings to mere half-cents on the dollar; possibly less. Yet he retains a percentage of the store he has funded in its entirety while receiving absolutely no payments of any kind in return. Nothing! He is in debt to the IRS due to this store; he has continued to fund it time and again to the point he has less than a month's worth of money available to care for him in a decent living establishment.
Have you had the experience of caring for a loved one who has Dementia of some kind?
He is a United States Army Veteran, having served in the late 1950's to early '60's, as near as we can determine. In researching (or trying to) his service record we have found that there was a fire in 1962 which damaged and/or destroyed vast amounts of records from before that time period. So to reconstruct individual service records is a challenge for millions of servicemen and women.
We also learned that in order to gain access to those records, one must send a letter requesting them. No phone call; no email; only a letter. Then one must wait for up to nine (that's 9) months before expecting a response. The site says to please not contact them a second time unless six months have elapsed. So, no quick determination is even possible if an emergency situation such as this occurs.
Then there is the information which shocked me to the core. If he is a veteran who served during peacetime, he gets nothing. Zero. Zilch.
One can serve in our Nation's military for years, be honorably discharged, yet not expect ANY assistance in hospitalization, mental or physical care, nothing? Nope, not one iota of help at all.
To receive assistance, one must have served at least one day during war time, and those years sandwiched between the Korean and Vietnam Wars do not account for anything, in our Nation's eyes. We weren't at war, so too damn bad.
So he has no money to speak of; he has no military Veteran's benefits to assist him; what else is available. Medicare!
Sorry, not here. Seems that because he has a vested interest in the store, he is not eligible for Medicare. It does not matter that he has no income from it; it does not matter that he owes thousands of dollars to the IRS because of it; it does not matter that he has spent possibly hundreds of thousands of dollars on this money pit, he has an interest in it so he will benefit exactly nothing to help him to live, to be in a hospital, to receive the care he will need for the rest of his life.
What a country!!!!!!!
So what IS available to him? Well, he receives Social Security for his 60 odd years of working, but we all know how much that is worth today. My lovely wife has run herself ragged these past few days trying desperately to find an answer to help him. Nursing home? The first one she walked into reeked of stale urine, was filthy, and was not a place one would submit a living person to willingly. She met with them anyway, as any information was useful at this point. The initial recommendation from them was that they would not accept his level of SS as payment, so he was not welcome there. Again, because of his having interest in that damn store.
So away she went, trying another one. This one is near our home and only a few moments from my work. It is clean, well organized, allows those who reside there to have their own room and privacy. It is an assisted living arrangement which means there will be someone on staff at all times to help him to remember to take his medications, feed him, make sure he doesn't fall and hurt himself, and to keep him safe from elopement. I found that term unusual at first, this elopement. I always associated it with young people running off to get married. But it has another, darker meaning for those older adults. Elopement means, in this case, leaving; walking out the door without knowing where they are going. In some cases this can turn deadly. Weather, traffic, unscrupulous individuals all can and do cause harm, even death for those unfortunate souls who wander away from their living arrangements.
This location agreed to work with us to place him into a safe, clean environment. It is truly lovely, having only twenty-five individuals living here in single rooms. There is a staff of friendly people ready and willing to assist him 24 hours a day; hot food prepared three times a day with snacks available anytime; a reading room; baby grand piano; two television rooms full of comfortable seating; and a wall chart showing planned outings for the residents which includes church on Sunday, Bingo, Ice Cream Socials, Valentine's party, dance classes, and a host of activities to keep both the mind and the body active according to the individual's desires and abilities.
And they readily accepted him at the level of his Social Security payments. This is a Godsend.
So for the first time in a week, we are able to draw an easy breath. But even that is tempered with other knowledge of what the future holds.Then we must begin to prepare ourselves for the long battle. In speaking with the Doctor on staff at the hospital, we were informed that in cases such as these, it is common for the patient to be healthy at the start, while the mind fails. Over time, the brain continues to decline, eventually taking the body with it. Infections begin to occur, minor at first but continuing to occur and escalate. Pneumonia is a real threat. Due to the body's inability to fight the infections, this debilitating illness will occur time and again, draining the body of the energy and health one step at a time. Medications can and will heal it, but it will come back. Time and again. The term "Quality of Life" was raised, indicating that at some point we will have to decide what is best: to cure him one more time only to know that he will fail again, perhaps in only a few days, thus keeping him on this roller-coaster ride of illness and antibiotics, rising and falling daily; or allow him to pass on to a better life.
We will cross that bridge when we get to it. For now, it is one day at a time.
Those first two days were agonizing. For close to twelve hours we took turns sitting with him in the Emergency Room, Tina, her niece and I. As Tina is the only living child, it has fallen to her to make this happen. Her sister passed close to twenty years ago due to Cancer. Her eldest child is nearly thirty now, and is stepping up to assist in whatever capacity she can. We are grateful, I assure you but ultimately the burden is on us. We will be going to his house some 80 miles away this weekend to clean it out. It is a rental, so no problem with selling the house or deciding what to do with it. He has a few belongings; not many. We are renting a storage location to place them in for the near future. A few things will be brought to his new room to make it as comfortable as possible. A recliner, his bed, some clothes and such, maybe pictures and a television set.
Because he was so active for so many years he does not have any hobbies to occupy his time so we are concerned about that. How does one go from driving a truck for the majority of his life to sitting around, waiting? He told me last night his first job driving was taking a load of cattle to Kansas City when he was fourteen. Imagine that: at a age when children today are not even ready to learn to drive, whose biggest thought in life is what to wear, who is cool, playing video games he was driving a load of cattle almost 200 miles away alone. It boggles the mind.
So how to proceed? We will be picking him up and taking him out occasionally, but he is not a shopper. His food for years has consisted on fast food type, and when home he was usually alone so bologna sandwiches and chips were the norm. He is not a movie watcher, reader, outdoorsman. He has been on the road or sleeping for nearly 80% of his life. This is a culture shock to him, as much as for us.
He is settling down, at least he is trying to show that he is. That first day after he was taken from the hospital to the care center was eye-opening. His moods went from near normal to tearing up, gently slapping his face as he tried desperately to remember. He is constantly asking about his billfold, his phone, his cars. We gently remind him time and again, never letting our concerns for him show. Being what most Father's are, he tells us to "give him a bill" for all the expenses we are incurring right now trying to get him set up. He does not want us to be out one single penny while doing this for him. Then a couple of moments later, he asks again, and we answer. Again.
His long term memory is good, shown by his ability to relay stories from many years back. How he broke his arm while in the Army; his first trucking job with those cattle. But he does not know who I am beyond I must be his son in law because I am with his daughter. If I were to walk in alone I do not know that he would know me.
His memories of his grandchildren are hit and miss. We have shown him pictures of them and he thinks he knows them but has not seen them since they were babies. And while it has been a few years, he has seen them enough that he does know them, but does not know he knows them.
At some level, he must know something is going on, even if he does not know what that something is. He tries to act normal, speaking to us in the here and now as much as possible. We try to not use the phrase "do you remember..." when speaking with him in order to not bring the situation up to him, thereby causing him distress by forcing him to try to remember something he probably will not. But inside that mind of his does he suspect? Does he feel fear at what he does not know? Is it a feeling of entrapment? Or is each minute fresh and new to him? I doubt that, but who knows.
Alzheimer's. Vascular Dementia. Caused by a mini-stroke or not. Due to his Diabetes or not. Is it the years of solitude, being alone while driving thousands of miles a year, allowing his mind to wander while maintaining a focus on the road? I know I can "fade out" when driving long distances by myself, often not remembering entire stretches of highway once I have arrived due to this strange habit of non-focusing. What we do know is that this seems to be due in part to a lack of proper blood flow to a certain part of his brain, thereby allowing it to die. I liken it to Swiss Cheese, as I imagine whole sections of the mind vacant, just holes in the neurons of the muscle that is the brain. Will they ever fill back in? We hope, but are doubtful. Will they spread? The probability on that is not good news. More than likely these holes will spread, taking his memories with them, and eventually taking the man that was with it.
He is receiving some medications aimed at slowing the loss, but at present there is nothing which halts it altogether. At best, we are told only a handful of years are left.
A couple of days ago, while leaving the hospital Tina looked at me and asked "Is this what I have to look forward to?" Her Father in a care facility due to his memory; her Mother certain of things which are not real. Between the two of them, she fears she is destined for this future.
Our favorite movie has been The Notebook. If you have not seen it, you owe it to yourself to watch it. Be sure you have a box of tissues around! It is the story of a young couple falling in love years ago and their present day challenges. I will not spoil it for those who have not seen it, but suffice it to say it is far more relevant today than it was a week ago.
We are finishing raising our children, and now find ourselves caring for a parent. I am in my mid fifties, she a few years younger. She has been a stay at home mother, caring for her brood her entire adult life. I have worked consistently since I was in Junior High, spending summers working and the rest of the year at school until exiting that life to the full time job market. We wonder, will we end up in the same place, having spent our entire lives working, working, working; never going to do anything? Struggling to provide for our children so that they might have a better future than we had? Never taking the time to enjoy the full fruits of our labors beyond mini trips here and there, yet never taking that Family Vacation every person dreams of? I even wrote of that a few weeks back, of planning to take the trip we have dreamed of; now that is gone once again, sidetracked by the need to care for a loved one.
People, stop and smell the roses every single chance you get! Put aside that chore you have, that "honey-do" list of things that "have" to get done. They will wait! Go! Do! See! Make memories! Take your children, your spouse, your loved ones! See America before it's too late! Tell others you love them, hug and kiss them! Don't just use the words, make the effort! Show them you care! Because this will happen to every single one of use at some point in our lives. Our bodies will fail, our minds will wander away never to return. We will be locked inside a cell with no way out. We may not be able to communicate our memories and thoughts to others but I pray we are able to relive them in some fashion inside our minds. That may be all we are left with in the end as we wait to meet our Maker. Once inside those pearly gates, all will be forgiven, all memories reinstated. Our bodies will be made whole once more to spend eternity with our loved ones.
In closing, let me say that our lives are forever changed. We will be caring for her Father in one aspect or another until he passes. Her Mother will follow, whether sooner or later we cannot know. At some future point, either she or I will be stricken with a health problem, physical, mental or a combination. As I am eight years older, history says it should be me; but with this in her history who can say?
We have been dealt a hand in which we have no hole card, no chance of winning the pot. We will play along, feeding this pot until someone else rakes it in. Most likely, it will be a hospital, nursing home, or Governmental Agency. All we know is that we are going to be feeding the pot for them.
Alzheimer's is deadly, not only to the victim but to the victim's family. It devastates them by tearing away the fabric of their lives, the ability to function normally because nothing is normal anymore. Work, home, family dynamics all change. Responsibilities shift dramatically; time becomes precious. Before you know it, time just vanishes and you are left wondering what in the hell happened.
We shall endure, because we must. There is no one else to pick up this burden and carry it. Tina and I will be made stronger because of it, but at the same time, we are being made aware of our humanity, our knowledge that at some point this will occur. I just pray it is a long, long time coming.
- Alzheimer's Disease and Dementia | Alzheimer's Association
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