ask an Alzheimer's wife

[MyThreeSons]

I just thought I'd throw this out there, in case anyone has any questions. My dh is 17 years older than I am. When we were married (28 and 45), the age difference didn't seem like such a big deal. Ten years ago, when I knew something was going terribly wrong with dh -- and our sons were 15, 11, and 9 -- it began to seem like a bigger deal. 

[Starr]

:grouphug:  :grouphug:  :grouphug:  

[clarkacademy]

:grouphug: :grouphug: :grouphug: and a lot of prayers

[kahlanne]

I don't have any questions just wanted to send :grouphug: :grouphug: :grouphug: . My grandfather passed recently after battling the disease for years. I know how painful it is for all involved.

[73349]

How have your sons dealt with it? My grandfather's Alzheimer's was hard on my dad & aunts, but they were all adults.

[Miss Tick]

I'm sorry. Is he still home with you? Do you have long-term plans for care? Was he able to participate in creating those plans?

 

I feel so sure that I will develop Alzheimer's and that my dh will be left caring for me. Thank you for opening yourself for questions, and if you decide not to answer any that is cool too.

 

How did you first become aware of the problem?

[Danestress]

How do you control (or do you) being overwhelmed by fear, grief and anxiety about the future? I am sure sometimes these things must totally overwhelm you, but how do you control it enough to cook dinner, pay bills, laugh with your children, etc.

[SpecialClassical]

You are very brave to open yourself up to questions. I can't imagine how the last 10 years have been for you. My only question is, do you have supportive people surrounding you? I sure hope so.

[Cinder]

(((hugs)))

 

I too am wondering what the first indications were and about any changes in your day-to-day routines.

[Guest]

:grouphug:  and thank you for being open to questions.

 

What advice would you have for other 20-30somethings who are considering a large age gap relationship? How would you advise their parents to deliver this advice in a respectful but realistic manner?

 

 

 

[MyThreeSons]

How have your sons dealt with it? 

 

It's been tough, but they have all handled it pretty well, but in their own ways. 

 

From the get-go, I told them that Dad was still their father, and that they were to respect and honor him as such, and they do fine with that. It is hard, though, to be so young and be put in the situation of watching out for Dad, instead of having him watch out for them. The two oldest sons each live about 1000 miles away now (and from each other), but when they were all home, we would sort of take turns with who stayed with Dad --either at home, or in WalMart or the mall, or even at church.

 

They all tend to be pretty protective of him. We are hugely blessed -- and they all know it -- in that dh has maintained his usual, laid-back personality. We laugh a lot.

[MyThreeSons]

I'm sorry. Is he still home with you? Do you have long-term plans for care? Was he able to participate in creating those plans?

 

.. snip ....

 

How did you first become aware of the problem?

 

Yes, he is at home, and quite happy. 

 

He is a vet, so VA care may be an option. Other than that, we have no plans, and no money. He has a fantastic family -- they all pitched in to care for his Dad at home for almost four years after he had a massive stroke. And now his Mom is at home with Alzheimer's and general old age problems, and everyone takes care to be sure she is never left alone. Dh is the oldest of seven children. There are kids, and grandkids, and great-grandkids galore. 

 

Initial symptoms included memory loss of recent events, but remembering long-ago events; loss of sense of direction; loss of the ability to think logically; inability to recognize that he didn't need to eat again twenty minutes after a full meal. He made some really poor financial moves, such as taking out a line of credit on our house, and using the checks from that to "pay" our mortgage every month. 

[MyThreeSons]

How do you control (or do you) being overwhelmed by fear, grief and anxiety about the future? I am sure sometimes these things must totally overwhelm you, but how do you control it enough to cook dinner, pay bills, laugh with your children, etc.

 

I guess I'm just so busy with keeping all the plates spinning right now that I don't have time to go there, most of the time. My two far-away sons are great about checking in with me, and we talk regularly, which helps.

 

I do sometimes literally stop and yell "I can't do it all anymore!", and I sometimes cry for a few minutes. But those things don't happen very often. 

 

I have to do a lot of things when dh is asleep or down at his office in our "barn". He wants to help, and tries to, but it's often more frustrating than useful. You know how when you're training a child to do some task around the house, they don't do it well, but you have the realistic hope that they will "get it" some day, so you persevere? Well, my only realistic expectation is that it's going to get worse. I wish I could say that I'm always patient with him, but I'm not. 

 

Meals are easy in some ways, because dh is always thrilled with whatever I serve him. If it's leftovers for us, it's still new to him, LOL. I do find that I often say, "Don't tell my Mom", as I serve a meal that isn't as well-balanced as she taught me. But I often find that dh has helped himself to something that I thought would be there when I went to cook. 

 

Right now, we have more good days than bad days. On a good day, we can leave dh alone for a short while, as ds and I go into town, run some errands, whatever. 

[MyThreeSons]

You are very brave to open yourself up to questions. I can't imagine how the last 10 years have been for you. My only question is, do you have supportive people surrounding you? I sure hope so.

 

Dh's family is amazing! They live about 20 miles from us. 

 

One of my sisters-in-law is particularly incredible. She and her husband moved in to my mother-in-law's house to take care of her, as m-i-l is widowed, wheelchair-bound, 90 years old, and has Alzheimer's as well. Two weeks after they moved in this Spring, my b-i-l was told that there was nothing else to be done for him, and he was put on hospice care. Two weeks later, he passed away. Every time we are there visiting, s-i-l shows great concern for me. She tells me repeatedly that I need a break, and that I can leave my dh with her while I get away for a bit. 

 

In some ways, it's a break for all of us when my dh and m-i-l are together. They can sit on the front porch and have the same conversation over and over and over and over again, without either one getting agitated. The rest of us can sit off to the side and have a discussion that actually flows, LOL. 

[Miss Tick]

Initial symptoms included memory loss of recent events, but remembering long-ago events; loss of sense of direction; loss of the ability to think logically; inability to recognize that he didn't need to eat again twenty minutes after a full meal. He made some really poor financial moves, such as taking out a line of credit on our house, and using the checks from that to "pay" our mortgage every month.

Yikes. That would have been confusing and probably anger-making for me if I didn't know what was going on. Was it a surprise, or were you watching for it based on his mother's diagnosis? Does the disease progress steadily (as it has for my grandmother) or can it plateau, so no worsening in symptoms?

 

I'm glad he has a large family near-by to help, and that you all get along!

[MyThreeSons]

(((hugs)))

 

I too am wondering what the first indications were and about any changes in your day-to-day routines.

 

I mentioned some of the first signs in another post, but I forgot to mention this: he has become very compulsive about some things.

 

For instance, he has always kept piggy banks and jars of change. When he got home each day, he would drop his pocket change in the jar. Every once in a while, we'd roll it and use it for something fun. Now, he will spend an hour or more at a time, sometimes several times in a day, counting his money. He will dump it out, sort it, put it in piles, add it all up, write it down, and come show me. Whenever he hears me mention something to ds about we can't afford to do something, he will bring me his jars and tell me we can use that.

 

He has also developed a fascination with recipes. He has binders and composition books full of recipes that he has copied by hand, from magazines, the newspaper, those little recipe cards you can find at the grocery store, etc. One of his prized collections he titled "Genuine Southern Recipes". In there is a recipe for some kind of Sushi, LOL. He doesn't cook, and he doesn't ask me to cook any of them. But as ds says, it's a cheap hobby, he's happy and it keeps him busy. 

[MyThreeSons]

Yikes. That would have been confusing and probably anger-making for me if I didn't know what was going on. Was it a surprise, or were you watching for it based on his mother's diagnosis? Does the disease progress steadily (as it has for my grandmother) or can it plateau, so no worsening in symptoms?

 

I'm glad he has a large family near-by to help, and that you all get along!

 

Actually, dh showed symptoms before his mother did. I knew something was wrong, but I had to write down some very specific examples of things before the medical professionals would listen to me. There were a couple of false hopes along the way that maybe there was another, possibly treatable, cause for the dementia, such as a B-12 deficiency. Once all of those were ruled out, we were left with the diagnosis of probable Alzheimer's. They say "probable" because the only definitive diagnosis can be made through an examination of the brain at autopsy, and as dh says, "We're not ready for that yet". 

 

He has been on a plateau for quite a while now. He isn't on any Alzheimer's meds, for over a year now, and he is still holding his own. 

[MyThreeSons]

:grouphug:  and thank you for being open to questions.

 

What advice would you have for other 20-30somethings who are considering a large age gap relationship? How would you advise their parents to deliver this advice in a respectful but realistic manner?

 

This is a tough one. My folks did try to talk with me, but I was hard-headed. My own Dad was 9 years older than my Mom, and I did see some issues creeping up with them before dh and I got married. I wish that my pastor had addressed this in our pre-marital counseling. I guess I'd suggest having the prospective couple spend some time with another couple who is experiencing some of the challenges this presents. 

 

Until dh got ill, he was very actively involved with our sons and their activities -- coaching, rooting, helping them learn to do things around the house, etc. He liked to say that being an older Dad was good because he had more patience, and he had his priorities straight. (He has three kids from an earlier marriage.)

 

The truth is, hard times strike same-age relationships as well. An accident, a stroke, cancer -- the list is endless. There are no guarantees that things will go well -- or badly. 

[plansrme]

How aware is your husband of his diagnosis and prognosis? 

[PrincessMommy]

I'm appreciating this thread.  Thanks Laura for sharing...

[Cinder]

Thanks so much for sharing. :grouphug:

[MyThreeSons]

How aware is your husband of his diagnosis and prognosis? 

 

As with the symptoms themselves, this comes and goes. 

 

Sometimes he will make jokes about it, sometimes he will complain about it, and sometimes he will say things like, "I don't know why I can't remember what I came in here for."

 

I think the thing that frustrates him most is his loss of sense of direction. He used to be one of those people who could get from here to there without a map, even if he'd never been there before. I saw him do it many times -- it was truly amazing. Now, he often has to ask me what town we're in as we're driving between two familiar places. And he seems to be aware that is part of the Alzheimer's. 

 

Surprisingly, he took it very well when I had to tell him he couldn't drive anymore.

[MyThreeSons]

How aware is your husband of his diagnosis and prognosis? 

 

oops -- I forgot to answer the part about the prognosis.

 

I don't really know that he thinks about that at all. He has never been a worrier or a long-range planner. He does, on occasion, remind me that when his grandmother had Alzheimer's, one of her main "things" was to take off all her clothes and walk off down the road. YIKES!! 

 

I have told him about an Alzheimer's day care facility not far from the co-op where I teach two days a week. He is so not ready to go there yet, but it may very well be in his future. Right now, we're still at the point where he trusts me implicitly, and if I say he needs to do something, he goes along with it without complaint or arguing. I'm praying that will still be the case when we need to take the next step.

[Rachel]

I don't have any questions but thank you for your willingness to share.

[AimeeM]

Thank you for sharing. *hugs*

[Ewe Mama]

Thank you for your willingness to share, Laura. You and your husband, from the accounts you have mentioned up thread, are handling his diagnosis with such grace, even through the more difficult days. :grouphug:

 

Sheep Daddy is 14 years my senior. He was just given the good news of being in remission from cancer. Prior to his cancer diagnosis, I noticed unsteadiness in his hands, shaking, tremors, whatever term would be most appropriate. I watched my grandfather and great grandfather suffer with Parkinson's and all I can think is that I don't know if I can bear to watch another person I love battle it. I need to suck it up and do some research, but I am terrified. There were some recent Parkinson's threads here that I couldn't bear to read.

 

Did you try to ignore your husband's symptoms for a time, even when you knew something was wrong? Did other people confirm your concerns before you sought medical advice? Was it an abundance of little things that added up or were they big, glaring elephants in the room?

[ThisIsTheDay]

God bless you, Laura. I'm praying now for you family, and for what lies ahead in your future.

 

:grouphug:

[umsami]

Thank you for sharing.  DH is three years younger than me, but his Grandma had Alzheimer's..and his Mom has some memory issues.  This has been very helpful.

[Slartibartfast]

:grouphug:

[StephanieZ]

(((hugs))) I am an Alzheimer's daughter (maybe I'll start a thread), and I grieve for your loss. This is such a devastating disease, and I know it would be 100x worse to face it in a spouse rather than a parent. Especially while you still have young children. 

 

FWIW, I have heard that there are very substantial benefits for veterans, including while he is living at home with you. I know that the home care agency I employ does a lot of work with veterans who are receiving VA benefits to cover their visits. 

 

I have found using aides to be very helpful in keeping Mom at home with me, as you can have them do all sorts of things with your husband, even now while he is still fairly well and can enjoy being out and about. Having someone to pay attention just to Mom, spending an hour searching Walmart for the very things she wants, etc, is a nice help. So, I'd encourage you to consider investigating VA benefits as soon as feasible. 

 

((((Hugs)))

[MyThreeSons]

Thank you for your willingness to share, Laura. You and your husband, from the accounts you have mentioned up thread, are handling his diagnosis with such grace, even through the more difficult days. :grouphug:

 

Sheep Daddy is 14 years my senior. He was just given the good news of being in remission from cancer. Prior to his cancer diagnosis, I noticed unsteadiness in his hands, shaking, tremors, whatever term would be most appropriate. I watched my grandfather and great grandfather suffer with Parkinson's and all I can think is that I don't know if I can bear to watch another person I love battle it. I need to suck it up and do some research, but I am terrified. There were some recent Parkinson's threads here that I couldn't bear to read.

 

Did you try to ignore your husband's symptoms for a time, even when you knew something was wrong? Did other people confirm your concerns before you sought medical advice? Was it an abundance of little things that added up or were they big, glaring elephants in the room?

 

My Dad had Parkinson's. It's a terrible disease, too. Every once in a while, I'll get a little twitch, and start down that "what if" path. I just can't deal with it, so I refuse to dwell on it. Probably not the best way, but it's what I do.

 

No, I don't think I tried to ignore the symptoms. In fact, I tried to talk with the Nurse Practitioner at the VA about it, and she pretty much said that it was normal aging forgetfulness. But I knew it was different. For one thing, it wasn't just forgetfulness. The loss of logical thinking was huge to me -- dh used to be an engineer. He didn't understand why paying the mortgage with checks from the line of credit wasn't a good idea. I couldn't make him see that he was getting us into debt deeper and deeper with each check he wrote.

 

The scariest time for me was when he got lost once while doing some deliveries on a part time job. We didn't have cell phones yet, and I had no idea where he was or how to get hold of him. He was hours late, and I was terrified. The company he was driving for didn't seem concerned at all. That was the last time he drove -- oldest ds and I took over after that. He continued to work at WalMart as a greeter for a couple of years, and that was a good fit for him at that time. He hasn't worked at all in about seven years.

 

I definitely saw things before anyone else, because I knew dh so well and recognized the changes. To this day, he fakes it really well. If we run into someone while we're out shopping, he will greet them like a long-lost friend, have a full conversation, and as soon as they walk away, he'll ask me, "Who was that?" The other person is always convinced that dh recognizes them. 

[MyThreeSons]

(((hugs))) I am an Alzheimer's daughter (maybe I'll start a thread), and I grieve for your loss. This is such a devastating disease, and I know it would be 100x worse to face it in a spouse rather than a parent. Especially while you still have young children. 

 

FWIW, I have heard that there are very substantial benefits for veterans, including while he is living at home with you. I know that the home care agency I employ does a lot of work with veterans who are receiving VA benefits to cover their visits. 

 

I have found using aides to be very helpful in keeping Mom at home with me, as you can have them do all sorts of things with your husband, even now while he is still fairly well and can enjoy being out and about. Having someone to pay attention just to Mom, spending an hour searching Walmart for the very things she wants, etc, is a nice help. So, I'd encourage you to consider investigating VA benefits as soon as feasible. 

 

((((Hugs)))

 

Hugs to you, too. It's almost like a sorority -- only those who have experienced it can truly understand.

 

Unfortunately, every time I've gotten my hopes up about some VA program I've read about, it turns out dh doesn't qualify. He only did one four-year stint in the Navy, so he's not retired. He has no service-related disability. And he was in the Navy during the years between Korea and Viet Nam, so he isn't classified as a "war-time" vet. His ship did get deployed during the Cuban Missile Crisis, but that's the closest he got to war. 

 

Money is a huge issue for us. Dh's Social Security retirement benefits cover the bills that come in each month, and I do some teaching and tutoring that brings in enough to cover groceries and gas. The adult day care place is only $50 a day, which is a great rate, but I'd have to tutor extra hours to make up for paying for that, because we're on the edge now without that expense added in. Then the more I tutor, the more I will need to have someone with dh. It's not quite a vicious cycle ....

[Cinder]

No, I don't think I tried to ignore the symptoms. In fact, I tried to talk with the Nurse Practitioner at the VA about it, and she pretty much said that it was normal aging forgetfulness. But I knew it was different. For one thing, it wasn't just forgetfulness. The loss of logical thinking was huge to me -- dh used to be an engineer. He didn't understand why paying the mortgage with checks from the line of credit wasn't a good idea. I couldn't make him see that he was getting us into debt deeper and deeper with each check he wrote.

 

I found this info really helpful. Dh often worries about his poor memory, and it annoys him, but I'm not seeing anything different. Like a loss of logical thinking. He's always had a bad memory and at some point I realized that it was "life and death" with him. As in, if someone's life depended on him remembering certain info then he could remember (work and family stuff mostly) but everything else isn't nearly as important and doesn't get the same priority.

 

I was trying to figure out earlier how to ask when is a poor memory just poor memory and when is it something that needs more investigation. You're helping me understand a little more. Thanks again for sharing. :grouphug:

[MyThreeSons]

Here's the example that I gave the NP, which finally got her to see I wasn't just talking about normal forgetfulness:

 

One day, as we were getting in the car for me to drive dh to his greeter job at WalMart, he pulled a debit card out of this pocket, and told me that he had found it on the ground just before I picked him up the night before. He asked what he should do with it, and I said I would take it and call the bank to let them know we'd found it.

 

Before we got to the end of our driveway, he asked me about it again, clearly not remembering that we had just discussed it.

 

By the time we got to the first turn off our road (a whole half-mile away), he asked me about it again. He brought it up at least two or three more times by the time I dropped him off, about 10 minutes later. Each time, it was obviously a brand new topic to him. That was very disconcerting. If he had mentioned it the night before, and then again the next day, I wouldn't have been concerned.

 

Not being able to remember what we had for dinner last night doesn't concern me. Not remembering that we finished eating a full meal 15 minutes ago is a problem. It's amazing that he isn't huge -- his brain and his stomach don't communicate that "full" message anymore. 

 

Not remembering all the right places to put the dishes coming out of the dishwasher isn't a super big deal, although it can be annoying when I go to grab the spatula while cooking, and it isn't where it should be. Helping himself to ice cream and then putting the almost-full carton in the bread cabinet does cause problems. 

 

Maybe that helps a little.

 

 

[Storygirl]

We have Alzheimer's in our family, unfortunately. We cared for my grandmother in our home until her death when I was a teen, and now my mother is in a fairly advanced stage, living in a nursing home. Because of our lengthy experience with my grandmother, I recognized the signs, and I know exactly when the alarm bells began to ring in my mind about my mom. She was in her early sixties and still working full time as a nurse, so still young and active. One night when we were visiting, she asked me something about dinner and feeding my young kids. We had a little conversation about it. About five minutes later she asked the same question, with absolutely no memory that we had already discussed it. So, very similar to your husband's first signs, Laura. It wasn't that she needed to have her memory jogged, as we all sometimes do; the memory of the conversation was absolutely gone from her mind. I knew at that moment. It took another year, and losing her job, to get her to talk to her doctor about it.

 

Cinder, everyone experiences normal forgetfulness to some extent, no matter their age. As we age, I think it's normal to feel that we are not as quick with the memory as we used to be, as your husband feels. The beginnings of Alzheimer's is something different than that, although you don't know for sure that it is happening until further down the line. I do confess, though, that I feel my memory is not as good as it used to be (I am mid-forties), and with Alzheimer's in the family, it gives me pause. There are some tests that doctors can do to judge memory impairment, so if your husband continues to be concerned, he should take to his doctor about it.

 

Laura, thank you for starting this thread!

[Cinder]

 

Cinder, everyone experiences normal forgetfulness to some extent, no matter their age. As we age, I think it's normal to feel that we are not as quick with the memory as we used to be, as your husband feels. The beginnings of Alzheimer's is something different than that, although you don't know for sure that it is happening until further down the line. I do confess, though, that I feel my memory is not as good as it used to be (I am mid-forties), and with Alzheimer's in the family, it gives me pause. There are some tests that doctors can do to judge memory impairment, so if your husband continues to be concerned, he should take to his doctor about it.

 

Laura, thank you for starting this thread!

 

Yes, I think dh's memory issues are normal for aging (nearly 50yo) and possibly related to his thyroid issues. He noticed having some trouble with his memory just before he was diagnosed with hypothyroidism. Impaired memory can be a sign. Actually he had several seemingly unrelated issues that only made sense after learning of his diagnosis.

 

Thanks for sharing your story too. :grouphug:

[Chris in VA]

Thank you everyone for sharing your stories.

 

Just wanted to add that my mil found out the statin drugs she was taking affected her memory. She is off them now--but this trip out, we noticed a few memory issues. I hope and pray it's just aging.