My Alzheimer's Nightmare

[HAP]

Dear friends,

One of the things I love--and hate--about this group is that it forces me to look at pieces I really don't want to look at--even if looking at them is good for me. Earlier this week I brought up in passing the fact my mother died shortly before Jane did. Some of you talked about how hard that must have been and it got me thinking about why it was not as hard as it should have been. I've had male friends who lost their mothers and all of them experienced a level of grief from that far beyond what I have experienced.

I've wondered about that a long time but always shied away from looking at it too closely. But I woke up with it this morning and what follows is what I think is going on there. I expect I am not done with this topic by a long shot--but this begins to bring me to terms with it.

My mother died of Alzheimer’s Syndrome about ten months before my wife Jane died of NET cancer in 2010. When my mother died Jane had already begun the steep decline that would lead to her death and there was little time for me to mourn her passing.

And Jane’s death has so overwhelmed me that I have allowed it to obscure my mother’s death and the grief I should feel about it. The truth is, I try not to think about my mother’s death because Alzheimer’s terrifies me--and I saw just enough of how it destroyed my mother to be far more frightened of it than of death itself.

My mother loved to read, she was a powerful writer, and a woman who enjoyed creating art, whether on stage or on canvas. She kept the checkbook balanced and enjoyed playing with numbers in all their forms. She was a fan of cooking shows because they gave her new recipes to try and new foods to experiment with. There was nothing passive about her—any more than there was anything passive about Jane.

She began her battle with Alzheimer’s in her early 60s—only a year or two older than I am now. Jane noticed something was off about her during my parent’s first visit to our new house, but my father managed to keep us all in the dark until my youngest brother got him drunk enough one night to confess what was going on with mom. Even then, my father worked to keep her at home—until she pulled a knife on him.

The last time I saw my mother she still knew who I was. My parents had come out to visit my aunt and uncle in New Castle, PA and Jane and I drove down there to visit. But much of the woman I knew had already disappeared. She’d lost her understanding of numbers by then—and with it a substantial chunk of her independence. Cooking requires numbers—as does handling any kind of money. Her patience with anything was long gone.

The written word was also beginning to slip away. She no longer wrote and reading was becoming increasingly difficult. Eventually, it all became squiggles on a page—and finally, not even that.

When he finally was convinced he could no longer take care of her, my father searched out the best Alzheimer’s facility he could find. He visited her virtually every day—except for the periods he was hospitalized because of his kidneys and heart by-pass surgery. People comment sometimes on how much I loved Jane and how well I took care of her. Compared to my father’s treatment of my mother in her last days, I am a miserable failure.

Her battle with the disease was so long and so drawn out that she knew precisely what was happening to her. I can’t imagine not being able to understand numbers—to watch my ability to add, subtract, multiply and divide slowly slip away—and knowing those vital skills were vanishing before my knowing eyes.

And I expect that it was far worse to lose the power to write and the power to read—and to know those things were going away every bit as inexorably as the numbers had.

I don’t want to deal with my mother’s death because it is more than likely my own. I understand genetics well enough to know there is a good chance I carry the same genes that sparked her Alzheimer’s. I know she did crosswords and jigsaw puzzles and number puzzles—all the things that are supposed to hold that nastiness at bay. But it destroyed her, just as it did one of her sisters and one—or more—of my great aunts.

There are a handful of things I am good at: I can analyze, I can think logically, I can learn, I can write, I can speak, I can teach. Those are the tools I have built my life with. Take them away and I can do nothing. Take them away and I am nothing. And the cruelty of Alzheimer’s is that you have to knowingly watch them disappearing—fully aware for years what is happening and completely unable to stop it from happening. I can imagine no greater torture for someone like my mother—for someone like me.

I remember visiting my grandparents back in the mid-1970s. They had a next-door neighbor who had lost his wife some years before. He had recently developed full-blown Alzheimer’s but continued to live alone in the house he and his wife had shared. I remember his plaintive howls in the night that no one could comfort. And I worry those will be my howls.

There is increasing terror in that memory just as there is increasing terror in the thought of my mother’s death. I am in a horrible and lonely race: will my mind stay powerful enough long enough to help find the answer to the NET cancer that killed my wife—or at least to put together something capable of doing that after I am gone?

I have no answer to that—only the certainty that I have to keep running the race for as long as my body and mind will let me.

Peace,

Harry

"...and that one talent which is death to hide, lodged with me useless..." --John Milton

[mfh]

Oh, Harry

I do so understand your fears. I lived with it...Bill died with ALZ and because his mom died with it...he lived with that fear and we talked about it often. I do not mean to scare you but I am saying nothing that you have not thought. I know what it is like, as you know, to watch the slide downward, the tiny and huge losses. I wept as I read your post.

Bill and I did our best with diet, meditation, etc. to fool the ALZ monster. He was, like your mom, a brilliant person who could do anything, solve any problem in building, woodworking, restoration, etc. his fall to the bottom was like your mom's. he was a poet, a clinician who waiting list was long because of his skill and sensitivity. All gone one day...except the kindness...it never left.

I wish I could say, do not fret. But you will as Bill did. I do know it is NOT a given that you will develop this treacherous disease but of course your chances are increased vs mine whose mother died at 99 with memory issues only at age late 90s. I understand better now why dealing with your mom's death scares you so much...it means looking at all of the possibilities. No one can or should try to talk you out of your fears. I do hope you can keep them at bay and KNOW that this is not a given so you can enjoy the present days and all you are and all you do. I can not imagine you being anything close to a miserable failure compared to your dad where caregiving is concerned. I see here one of the most loving husbands I have ever met.

What we did was live life to the hilt. We retired early, moved to the mountains to a village high up with a mountain out our front window, hiked, biked, motorcycled, traveled as much as we wanted, got a motor home and escaped for two years...we cherished every minute and after all that awareness I can honestly say denial was still ours to deal with. I wish I could grab a magic wand and tap your shoulder so that peace would be yours in this regard...perhaps dealing with your mom's death will assist you in dealing with your own fears so that you can live with as little anxiety as possible about this. You are already on my list of people I remember every single morning....a rather long list as I age...I will continue to do that knowing better what it is that causes such struggle.

Peace to your heart, Harry

Mary

[HAP]

Thank you, Mary.

You've said it much better than I can.

Harry

[kayc]

Harry,

I thank you for starting this thread, because I am going through it with my mom. She has Lewy Bodies Dementia. Many people haven't heard of that (I hadn't until her diagnosis), but it is similar to Alzheimer's, perhaps worse in some ways, and is the second most diagnosed form of Dementia, Alzheimer's being the greatest number. It involves, of course, memory loss, inability to reason, Paranoia (which she has had all her life), Parkinsons-like symptoms, losing balance and shaking, delusions, and in more advanced stages, violence. There are more symptoms, too many to list, but these are the ones that come to mind.

I don't really worry about getting it because my life has been so different from my mom's. My mom didn't work outside the home and quit using her brain to any great degree many years ago. She is 90 years old and I seriously doubt any of us kids will live as long as her. She took good care of her physical self, never being overweight and being disciplined about her diet and exercise. Most of us kids have worse genes than hers as we seemed to inherit the bad ones from both her and my dad. We were, however, all more mentally stable than her. I am seeing signs of Dementia in one older sister, but she also quit using her brain at age 50 when she retired. I tried to interest her in outside activities, volunteering, spending time with friends, etc. all to no avail as she sunk deeper into depression, choosing only to have it treated with medication with no changes in her life style. My siblings and I worry about her but are unable to affect her choices so we have to accept that she won't have a long life as she gets no exercise and insists on smoking. We have to accept what we can't change and just love her for who she is.

I know of no disease more frightening than Dementia as it robs a person of their very self...their memories, their abilities, their identity. I must say, it has been a learning experience. Most of the time I do pretty well with it but this last month has been a real struggle and I'm afraid I could have handled things better. I am learning, though, and it is all quite a learning experience. To try to afford the person their own personal dignity while putting your foot down with areas of safety...well, it's quite a balancing act. It is easy to get swallowed up in their disease. Oh how I wish that no person had to suffer this!

Harry, I didn't know your mom but it sounds like she kept active. I know we probably can't ward off Dementia completely, but there are steps we can take to help delay the onslaught...using our brain, getting stimuli on a regular basis, etc. Maybe that can't fully stop it from advancing, but perhaps we'd succumb to it all the sooner without these practices. Perhaps if your mother hadn't been the type of person she was, she would have gotten it ten years sooner, who knows. In my mom's case, I have no idea when she started developing Dementia because her other disorders masked it and it was quite severe before we realized it was definite. We had to take her to court to force her to get a medical evaluation and it took a full year, meanwhile she lived very unsafe and we were in constant stress over it. It is a very hard situation for children or spouses to be in.

Harry, you may have delayed grief over your mom, but you probably did some grieving ahead of time too. It is easy to feel relieved when someone has had something so horrific happen to them and then are finally released from it. I'm sure I'll have a lot of mixed feelings when my mom goes, and all of them will be valid and understandable. I am so sorry you had to go through this, and your dad too.

I can only say, "Ditto!" to Mary's post, she expresses everything that's on my heart.

[enna]

My dear Harry,

Thank you for sharing this personal piece of who you are with us.

You speak of something I am very familiar with and not because I want to be but because that was part of my life for the last five years of Jim’s life on this earth.

I would like to start out with a quote that we used over and over again in our Alzheimer’s Caregiver Support Group: “If you know one person with ALZ you know one person.” Every single situation is unique. There are many types of ALZ and they are as unique as the individual who has this disease. Never does two people follow a pattern because there just isn’t a pattern.

My Jim had an age related ALZ. His brain continued to shrink as he progressed in the disease. He remained calm and as his personality always was during his lifetime he was like a teddy bear to the end. The twinkle in his eyes never faded. My journey through this has been somewhat recorded on my thread – My Beloved is not with me Anymore.

I can understand what you are saying when you say that ALZ terrifies you. Yes, that is exactly what it does – terrifies those who are on the outside not able to fully understand what is going on with their loved one or what might happen to us.

My Jim worked with numbers all of his life, he used numbers in his pilot days, his business work and in the last years when he spend hours at the Softball Park keeping score for the Senior Softball Terms here in Pebble Creek.

I understand what you are saying about the written word. Jim was an avid reader, crossword puzzle solver, and Council Member at our church. Slowly these things disappeared. I am not going to sugar coat what happens if someone has this disease but I want you to always remember the quote at the top of my post.

My greatest help was to learn everything I could about the disease. I even helped start up a group of caregivers here in our community because we could not be away from our loved one for long periods of time. We brought in excellent facilitators and speakers. Over the two and a half years that I was involved in the group I found myself better able to understand what was going on in Jim’s mind. The sharing of all the caregivers was enlightening.

You are assuming that because your mother had the disease that you will have it. This has NOT been proven nor does it happen often. Many factors have to be present for genetic risk. The fear is always there and I do understand what you fear.

I am here for you as are many have who have traveled this journey with loved ones. Anne

[mfh]

"She has Lewy Bodies Dementia. Many people haven't heard of that (I hadn't until her diagnosis), but it is similar to Alzheimer's, perhaps worse in some ways, and is the second most diagnosed form of Dementia, Alzheimer's being the greatest number."

Kay, I do know about Lewy Bodies...the geriatric psychiatrist we worked with estimated that Bill had three kinds of dementia including ALZ and Lewy Bodies. I do not recall the third off hand.

Of course we do not know anything definite about who gets ALZ or other dementias...without an autopsy but hopefully that will change soon. I am sorry your mom struggles and you do as caregiver with this form of dementia.

I think the thing to remember for all of us is that from what I know, we just do not know for sure who will be Dx with dementia and what type. Because a parent has it, does not mean that a child will...and as Anne said, everyone is unique...it looks different on everyone...new medications are being developed all the time....and in spite of that, we do get fearful. Understandable.

Peace

Mary

[kayc]

You guys are so great, always so encouraging. Thanks for the reminder that each one is individual. Yes, I've seen that. One of my best friends died of Alz. years ago and she never became violent and although she did forget who we were, her spirit remained sweet and she knew we were familiar, just didn't know how. She got her late husband and her second husband mixed up, but her second husband, Bill, didn't allow himself to be upset by that, just kept loving her and being there for her to the very end.

In watching my mom, I know she knows (at times) something is wrong, that is the hard part. When they reach the stage they no longer know, I don't think there is much to fear anymore. It is easy to fear getting it ourselves, but if we continue to use our brain and be well-rounded, well that is the best we can do...and they are always continuing research on it, who knows what will transpire in the next ten years.

[Queeniemary]

Harry, thank you for sharing, it is very understandable that your grief for the loss of your Mother has been overshadowed by the terror you feel about Alzheimer’s, as well as Jane's illness. You have had a double whammy, for a very long time.

Almost every one of us will have a story about Alzheimers, I have a brother in law in a facility in Prescott AZ. He was so very intelligent, taught school for the blind in VA at one point, he was a math teacher. The long slow decline of his faculties has been so very sad. He can no longer even work word puzzles. He still knows each of us, but does not really remember we were there after we visit. Each of my sister's children, because of their Dad, have the same fear that you carry.

I hope you are able to fully deal with your Mother's death, when it is the right time for you. You will always feel you left something undone if you do not. You have a right to your fear of the same outcome, but there is nothing that says it is certain that it will happen to you. She deserves your grief. And I am sure you will give it to her, when the time is right.

These are just my opinions, I really know nothing, just an old lady, who reads lots of fiction, watches movies, and acts and directs plays. Not really credentials to give advise. lol.

Thinking of you Harry, as you begin to explore this topic, and your feelings about it.

Mary (Queeniemary) in the freezing Arkansas Northwest