Facing a Diagnosis this Week
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My DH who has ALZ was relieved by the diagnosis. He had known something was wrong for several years. I have a medical background, so I had some idea of what that meant, but I discovered that I had so much more to learn. At first, I talkedd to him about the disease and some of the things that could happen down the road. It wasn't long before he really didn't want to talk about it. He prefered and still prefers to ignore it as if it isn't really causing any problem.
I spent a goodly part of the first year alternating between what will i do now, grief, depression and I can handle this. After almost two year from the diagnosis, I think I have leveled out and just iving each day as it comes.
Speak to an attorney and get the legal stuff in order. You will need POA for everything, includindg medical. In the early stage, your DH can still sign things legally, so make sure that is done.
At some point you will tell those who need to know what they need to know. I send out group texts to our adult children to keep them informed on their father's progress.I have learned that they want to help with the burdens and now I let them.
What helped me was to read everything i could about the disease, about the meds that are available (and their side effects!). Fore warned is fore armed, so to speak. The 36 hour Day gives you an idea of what it is like for the caregiver and family. Personally, not my favorite source. I really like the Tam Cummings and Teepa Snow videos on Yourtube. They have helped me more than anything. Neither of these ladies pull any punches. Teepa Snow is especially good on showing how to interact with someone with dementia.
I really am so very sorry that you find yourself here, but this group is wonderfully supportive and there is never any judgement when you think you have screwed up and done something unforgivable. This is the place where you can be honest and, bonus, there are others here who will have great advice or are further along in the journey that can give you an idea of what more to expect and how to deal with it.
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Welcome. So sorry you need to be here. The first thing I did was make an appointment with a lawyer. This is very important. Thankfully the doctor told mom she should not drive or live alone. If you are questioning his driving at all I would ask the doctor(give him/her a note, bringing it up in front of your husband probably won’t go well). It’s nice to be able to blame the doctor. You will get blamed for enough other stuff. Mom had been kind of living on her own and one of her biggest symptoms was poor judgment. There was so much to to. She hadn’t replaced her cpap machine when it broke a few years ago and it needed to be replaced, she had lost lots of weight and had basically no clothes that fit her, she hadn’t been to the dentist in ages and needed two teeth pulled, hadn’t seen an eye doctor and she hadn’t been to a hair dresser in a long time. She was always very independent and would not allow help. After her diagnosis it was obvious I needed to take control. Because we were told she should not live alone, so she moved in with my brother, but her house was a disaster! I also did a lot of reading to learn all I could about dementia, Medicaid and how care facilities work. As depressing and scary as it all is I felt better at least having some idea of what to expect and having some idea how the system works. I tried really hard to figure out what to do next. There were so many things to consider. My brother works full time, was she safe alone?, would she qualify for Medicaid?, should we hire caregivers or bring her to Al?, how long would her money last? She constantly wanted to be taken to her house, which caused her lots of stress. Learning different ways to interact and approach difficult situations with your lo can make a huge difference. Learning to never argue is a big one. The first year I was so incredibly busy and stressed! I have attached a few resources that may be helpful. This forum has been such a great resource. There are so many little things that come up that no one can help with unless they have been there.
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I am so happy to get your response and to know that I’m not alone in my feelings. I will follow your suggestions here. I have already subscribed to the podcast that features Teepa Snow & our attorney is finalizing our estate documents now for signature. What occupies my mind a lot now is figuring out how I can manage for as long as possible with my husband in our home. Any thoughts on that and finding the right person to assist?
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I’m sorry you are living with your Mom’s diagnosis. In addition to my husband’s diagnosis, my 89 year old Mom is steadily declining in ways you describe in your post. Thankfully I have two sisters who live near her and keep up with her needs. I’m sad that I can’t be more involved but I’m needed at my own home. I really appreciate all your comments and advice particularly the one about not arguing. I’ll keep that in my mind for the future. Thank you again for your generous response.
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@jennybeeay Thinking of you today.
My advice pre-appointment would be to write down any questions you have.
After, make sure your legal stuff is done. Trusts, POAs, Medicaid planning, etc. It would make sense to plan any bucket list travel or experiences if you want to do them asap. Consult your insurance agent to find out if your auto policy is valid with a dementia diagnosis.
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You mentioned your anxiety over where to find help for your DH. We are blest in that our children came up with the idea that we would all work as a team in finding solutions to problems as they arose, including spending time with their dad (or father in law) as needed to give me break. I know that not everyone is so fortunate. But, in terms of practicle thngs…we hired a part time house cleaner, I got a personal safety device for myself (help, i've fallen button), I need to change the lock on the front door so DH will not open the door to strangers (back yard is fenced and I will get a key lock for the gate so that he cannot escape), get cameras and alarms for all doors . Eventually, I will need to get someone to stay with DH so that I can get out if the kids are unavailable. Then, there is home health which your doctor can refer for you as your DH needs more physical help. Some places have adult day out centers and ultimately, there is either hospice care or memory care. After Christmas, I will be touring all the nearby Assisted Living and Memory care facilities and get his name on the waiting list…just in case that is needed.
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I just signed up here and already feel supported. My husband was diagnosed last month with Alzheimer’s. He is in an early stage. He had been undergoing extensive testing since July, and although I knew where this was heading, getting the actual diagnosis hit me really hard. I’m frequently weepy.
He is going to have infusions of Donanemab. I cycle between feeling calm and confident and more often, just panicky. We put his younger brother in a memory care unit in August. That was very difficult. We have an appointment next month with a social worker, and I’m hoping that helps me find more resources.
My heart is breaking, and I know you are all dealing with heartbreak also.
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Thanks so much for your response. I hadn't even thought of the insurance part of this yet. Based on our appointment today, I think my husband is in the early stages. It was a bit of a relief but still hard to hear the words Alzheimer's. He was focused and asked a lot of good questions so I wasn't falling apart after our appointment. Our doctor thinks he's a candidate for some meds so he's recommending the following
- Treatment Plan
- Donepezil to start - risks and benefits discussed as noted above
- Add memantine as indicated
He thinks this could keep my husband's condition on a much slower progression. We are considering this now.
Thank you again for being a support to others in need.
0 - Treatment Plan
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Thank you very much for sharing this. Can you tell me how advanced your DH's condition is? You are fortunate to have a supportive family living nearby. I will be thinking more about involving others as time goes on. We haven't told anyone about this diagnosis yet so it's just between my husband and I right now. My husband doesn't want to tell anyone just yet so I respect that. His doctor has recommended some meds that may slow his decline down so hopefully we have more time before I need to really implement help in the house. This was a relief to hear but we will see how the meds actually work. Praying for more time…
Thanks again.
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welcome. Glad you found this online community but sorry for the reason you are here. You are at the right place. Some things to do right away: get your legal affairs in order. Meet with an elder care attorney. You will need DPOA & Medical POA & HIPPA forms. I would just tell your husband you’re both doing them since you’re getting older and not mention his diagnosis. Name someone else as your POA. Read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Search online for dementia caregiving videos by Teepa Snow or Tam Cummings. When you post again, create a new post by clicking on the plus sign in the lower right hand corner. Put in a subject line and create your post. You will get more replies if you create a new one. Come here often for info and support.
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You've gotten a lot of wonderful advice here. My DW of 40 years is at the 6/7 stage. We had a wonderful life together leading up to the diagnosis. What I would add is this - if you two have something you've always wanted to do or even if you don't - do it now. Go travel, go out, do what you can now because there will come a time where you can't. I don't know if you still work or not but the time will come when you cannot leave him alone. Start to think about how you will approach that. Many of us hire outside help to give us a few hours of relief. And lastly, read Bill's 'the Calvary isn't coming'. It's a bit of a downer but you need to prepare yourself to learn a lot about people and family you thought would be there for you. And let me add one last thing. Some of us get caught up in the mechanics of dealing with it. Alarms, locked doors, etc. Don't forget - he's still in there. Try to keep emotionally attached. Lot's of touch, hugs, etc., even in the later stages.
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Thank you for sharing your story and your suggestions. I will definitely put this advice to good use and get the book you suggest. I have things on my Audible books list that I listen to while I take walks. It helps deal with the emotions I feel when listening to the stories. I feel like there is a raging storm up ahead and that I need to toughen up. Thank you again.
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Thank you so much for these solid suggestions. Thankfully we have our estate documents all drafted..just waiting for a final to sign. I will add your book suggestion to my list of books to listen to. Hopefully it’s on Audible as that’s the best way for me to read these days. All the best to you…
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@perservere, I just figured out that you were referring to a post not a book. What a wonderful suggestion and more of what I want to prepare myself for life to come.
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I’m unsure if I responded to you yet. I’m learning the structure & rules of this forum at the moment. I so appreciate your response. I also appreciated reading the post you forwarded. I related a lot to it. I’m being reminded of how many kind people there are out there, including you.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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