feeling so alone

Kalyd

Hi, my name is Kathy and I'm 63 years old. My husband Billy, who is 65, was diagnosed with early age onset AD in January 2022. His symptoms started roughly a year prior (2 years after retirement) but we initially thought that his forgetfulness, misplacement of personal belongings, repeatedly asking the same questions and confusion was due to his anxiety and concern over my recent health issues. (I have an extremely high stress career, was diagnosed with very high BP and cholesterol and a very recently diagnosed eating disorder. I had a stent placed in my LAD artery to clear an 85% blockage in 02/2021). His symptoms kept increasing though and his anxiety was higher than it had ever been. He was angry, moody and tearful more frequently. After testing, we was diagnosed with Alzheimer's Dementia. From the start, he has blamed me for making him go to a neurologist in the first place. (Prior, he had not seen any type of Dr. for over 10 years. Since then though, he has a new GP and has, I think, every test imaginable and is in perfect health. I the words of his Dr. he is healthier than most 50 year olds.) He says he wishes that he never learned of his diagnosis. But we had to have answers. Was he just ignoring me when I asked him to do something around the house, was he actually forgetting things or was it me as he would say, "you may have thought you said something but you didn't", etc. Our 43 marriage was becoming full of stress and conflict, something we had very rarely dealt with in the past. So, he got the diagnosis and he is now participating in clinical med trials with our local neuropsychiatric research center. He has 7 blind infusions to date, administered monthly. I have not seen any positive changes. He is continuing to be forgetful, (including leaving the stove burner on and then going outside and forgetting about it), he loses everything (in spite of me setting up a designated station for his keys, phone, ear pods, etc), he increasingly asks me the same questions at what seems like a million times a day and there is so much more. While this is all happening, after a 9 week stay at an eating disorder treatment center, I attend virtual partial hospitalization 6 days a week for 6 hours a day (this is mandatory). While I am on online programming, there are numerous interruptions, safety concerns (the stove being left on or him working on replacing light switches, something he used to know very well, but now is very confused by it but still think he's capable of doing). When I try to approach him about my concerns, he says that I'm treating him like a child and that I'm the one who is adding to his stress, making his anxiety level high which is contributing to his increased symptoms. I just don't know what to do. I have to focus on my own physical and mental health or I will be of no use to him but I feel that he needs me to be calm and with him most of the day, engaging in activities that we both enjoy (nature parks, kayaking, the beach, etc) but I have to do attend programing. I was just notified yesterday that my employer will only extent my medical leave until 01/15/2023 (they have already filled my position). So I will be losing a large salary, paid medical insurance (I'll be able to purchase Cobra for 18 months) and on top of this, our city was heavily impacted by hurricane Ian on 09/28 and we are awaiting a new roof, pool enclosure, vehicle repair, etc. This has been devastating beyond belief and a HUGE out of pocket expense that we are not prepared for. We live with our daughter who works on Sanibel Island which was also impacted by the storm resulting in a 1-2 year restoration time frame of the resort that she manages. My parents who live in New York (we live in Florida) are 85 and 88 with increasing health issues so nothing is going well. Life cannot be any more stressful and I just need some help coping with this diagnosis. I love my husband more than anything and maybe even more importantly, I really like him and we have a lot of fun together.... most days. With his symptoms increasing though, he is more angry and depressed (refuses to take meds for anxiety or depression. In fact if he takes a tylenol, we think the world is ending because he just is that healthy and has never taken any medications, prescription or over the counter. I know that this is long and scattered but I'm just at a loss. I don't know how to deal with this. It is all so new and so frightening. Thank you for "listening".

M1

Kathy, welcome to the forum.   You have come to the best possible place for support and advice and learning practical things.  I am so sorry for what you are going through, that's really an enormous amount.  But coming here was a good move, I assure you--it's kept me afloat (I'm 66, with an 81 yo partner recently put in memory care seven months ago).

I'm sure you are at a loss as to where to start.  I am glad he is in trials, even if you're not seeing benefit, hopefully the docs involved are experienced.  I have to say, telling someone with EOAD that they are healthy is an oxymoron:   he has a fatal brain disease.  One thing many here would say, including me:  don't try to reason with him about his disease, remind him of it, etc.  He is beyond rational argument, and your life will be easier if you just give this up (hard, I know, because you are probably used to discussing everything with your spouse).  But reasoning with him is going to be like trying to reason with a two year old (if not worse)--it's just futile.  If you're not familiar with it, look up and read about anosognosia:  this is not denial, it is a feature of the disease in which he is truly not able to recognize that he has deficits.  A large proportion of PWD have it, and it sounds like he does, as well.

Another thought--do you have your legal ducks in a row?  This always needs to be addressed early.  You will need power of attorney for finances and healthcare, ASAP if you don't already have it.  And he will not be able to serve as yours, so your papers may need updating, too.  If you are anticipating that he may need memory care at some point, a certified elder law attorney can help you with financial planning, too (you can look for such attorneys by location at nelf.,org).  

Trying to deal with your own health and the aftermath of the hurricane is just over the top.  I can't imagine--we do have a number of other Florida members, I'm sure some will chime in.  Do you have other children?  Just trying to think of how to maximize your support system.   Good luck, glad you found our group.  It's a good one, I promise.

Iris L.

Kalyd wrote:

Hi, my name is Kathy and I'm 63 years old. My husband Billy, who is 65, was  med trials with our local neuropsychiatric research center. He has 7 blind infusions to date, administered monthly. I have not seen any positive changes. He is continuing to be forgetful, (including leaving the stove burner on and then going outside and forgetting about it), he loses everything (in spite of me setting up a designated station for his keys, phone, ear pods, etc), he increasingly asks me the same questions at what seems like a million times a day and there is so much more. 

Welcome Kathy.

I'm sorry to have to tell you, but your DH should no longer have unsupervised access to the stove or anything dangerous.  You must dementia-proof your home.  Read the Home Safety section of alz.org.  

He will lose everything because he cannot remember anything.  Put everything important away.

Keep in mind that clinical trials may or may not help the current population, but may help future generations.  I suggest you read about Exelon patch or Aricept and Namenda, and consider those medications instead of a clinical trial.  Discuss with the neurologist.

Both of your lives have changed immeasurably.  Please read a lot of threads.

Iris L.

Rescue mom

I responded more on your other post, but just wanted to second what Iris said. He can’t remember, or may not always remember, that “designated places” for things exist. Expect things to get lost. If it’s important, you have to take charge of it. Make copies, have duplicates handy, or hide it. 

The stove and other things that could be dangerous, I turned off so he can’t use them alone. Fake thermostats were needed to keep reasonable controls on the heat/AC. Dementia-proof your home much like you make it safe for babies/toddlers.

My DH used to do a lot of home repair, but then he couldn’t. Couldn’t find tools, couldn’t remember which tools were needed, couldn’t remember how to put it back. Or just walk away minutes after starting. I learned he simply cannot do that anymore. Either I have to, or somebody else does—and “somebody else” had to come when DH couldn’t see what was happening. It’s very complicated, and exhausting.

Kind of same with repeated questions. Most of us learn, as sheer survival, to just answer quick and simple, and move on.

What M1 said is sadly true, and what makes this disease so sad and hard for caregivers. He has a brain disease. You can no more reason or explain to him, than you could to a toddler.