feeling so alone(2)

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".

Sligo177

Kathy,

I am so sorry you have to be here, but welcome to this wonderful group of people who are going through different versions of this - it sounds absolutely overwhelming.  First of all, please take care of you.  Try to get your sleep.  Find answers here on the forum, so many wise people who can share advice.  One thing I hope might be possible is for someone to (eventually if not now) come in and spend time with your DH so you can get some respite. 

Ed1937

Kathy, welcome to the forum, but sorry you have a need for it. People here will give you excellent advice, they will understand whatever is bothering you, and they will offer support.

It sounds like he might have anosognosia, although it might come and go. Here is a good article on it. https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm  

I'm sorry you were hit so hard by Ian. I have relatives in Cape Coral who are dealing with it too.

And I'm sorry to hear about the loss of your job. But if it's a very high stress job, that might work to your benefit, as long as you can make it financially. Caring for someone with dementia can be very stress related too, and you need to keep other stresses at bay as much as possible.

It would help you if you read all the posts you can. There is a lot of information here.

Finally, here is one more link for you that really explains dementia. https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf  

Northeaster

Hi Kathy,

Thanks for sharing and welcome to this group. I'm relatively new as well and have found great comfort and information on this site. You are not alone, as we all are in some phase of the journey. Please continue to focus on your own care. You are important.

60 falcon

Hi Kathy.  Like Ed mentioned, spend time reading on this site. If you're like me you'll probably scare the hell out of yourself by what so many of us are dealing with or have already dealt with. But the knowledge you'll gain will be so helpful in the long-run.  Keep in mind that everyone's dementia experience is different and you and your husband probably won't experience all the possibilities.  

If you haven't done it yet, find a certified elder law attorney and get your legal stuff in order, things like durable Power of Attorney, Healthcare Power of Attorney, wills, etc.  In my opinion these things things need to be done asap.  Taking care of that was one of the first things my wife and I did.  It's important in so many ways and eventually your husband won't be able to sign his name.  

In those early days my wife also said many times that she wished she had never gone through all the testing and that she didn't know that she had EOAD.  I suspect she was not happy with me for pushing her to get it done. But, it had to be done to rule out other possible causes for her problems.  

This forum was a huge help to me. Very few topics are off limits here.  If you guys are having particular problems or if you have certain questions, other folks here have had the same issues and questions. They'll likely be able to give practical advice. This is a long hard road to be on. At least here on this forum, we all understand and can relate to each other.

Ed1937

Falcon mentioned seeing a CELA. That really is something you don't want to wait for. It is really THAT important.

Rescue mom

Kathy,  am so sorry you need to be here, and the hurricane…I’m also in bullseye area, we’re probably almost neighbors. My DH was diagnosed with Alzheimer’s 3-4 years ago, all you write sounds so familiar from those early days.

The biggest, quickest thing I can say: The resources from the local Alzheimer’s Association (all free) are invaluable. They also have support groups all over the county, although I’m not sure of details since Ian. But the main office is running. It’s called the Dubin Center, near Cleveland Ave and College Parkway. Many support groups meet met there. You can Google Dubin Center Fort Myers for more info.

They’re also doing more Zoom now, since Ian.

Maybe bigger for you now: Their professional staff can meet with you privately, and talk about things to expect, what you should plan for or think about, and tell you Local experts, such as lawyers, doctors, CPA, home help, etc.. They don’t recommend any one, but do give you a list of knowledgeable people.

You really do need a CELA asap.

The support groups are great, everybody’s been through this, and shares tips, plus socializing.

This board has more useful, helpful tips than anywhere. Then the Dubin Center can help with local resources and more personal tips.

By all reports, the hurricane has caused widespread mental/emotional damage, especially for PWDs and caregivers, as you say, now handling recovery, too. Take all the help you can get.

Twin Mom

If I were to recommend one thing it would be to have him seen by a geriatric psychiatrist.  It sounds like some mood meds might be in order....it might delay or halt other more troublesome behaviors later.  You are not obligated to be his punching bag.  Sounds like from your post he is still driving.....in my opinion this should be brought up to his medical team and let them provide their opinions on this.  It is possibly a ticking time bomb in many ways.

Marie58

Welcome, Kathy, although I'm sorry you have a need to be here. You've gotten some great advice so far. Getting affairs in order is a priority. Learn as much as you can, but remember every PWD is different. This is by far the best place to be to learn, ask questions, get support, or just vent. In person or zoom support groups are good, too. It's hard, but try to take care of you. Your DH needs you and you love him and want to do your best, but you have to be able to do that. Get help as needed, even if it's just a friend taking him out to lunch so you can nap, run errands, whatever.

I remember the time right after diagnosis all too well. It's devastating news. I knew nothing about dementia. My emotions were all over the place. I was still working and worrying about DH when I wasn't home with him. I was tired. You get the picture. Be easy on yourself.

Blessings to you and DH!