I am new to this community

Rebecca Cook

Hello, I am new to this community and looking for support and help. I am 78, and my husband is 5.5 years younger. I have spoken at length with my doctor about what's going on in my life, and she has been very supportive and suggested I come here for guidance. I have seen my husband's decline over the past several years, and since he had back surgery this past January, I feel that it has increased. I wrote to his doctor about my concerns. At his next appointment, I accompanied him, and he received a verbal assessment; we were then told he was fine. He is not fine, I live with him, and we've been married 45 years. I have tried speaking with him about this, and he became angry, and said I might as well just drop him off at some "center" and forget about him, then stated he also might as well go get a gun and end things. (All very unlike the old him.) I know that there are ways and meds to help him, but first, he has to be on board so that we can access testing and help. I have thought about asking a couple we have been friends with for the past 35 years to join the conversation. The husband is a retired doctor, and my husband has a great deal of respect for him. They know the situation here. Currently, the retired doctor is in Venezuela with a team, and I do not know when he will return. Do you think this is a good plan? One of my biggest concerns is that I have a comprehensive and chronic disease, which limits my energy and mobility. I am also concerned that an outside confirmation will plunge him into depression and hopelessness. My hope is that he would be encouraged to know about the help he can get. We have one child, and she and her husband live in England, while we are in the US, which also adds to the stress, because she is not here to offer any help. My illness of almost 20 years has caused most of our long-time friends to wander away, as I cannot actively participate in any kind of social life, and I have to spend much of my life on the bed.

I know where I want to start, but I need him to be part of it. If you have other suggestions on how to accomplish this, please let me know. Thank you.

H1235

Welcome. I’m so glad you found our group. Many with dementia have anosognosia. This is the inability to recognize their symptoms or limitations. My mom accepted her diagnosis when first diagnosed, but I think she believed she was in the very very early stages. One year later she refused to accept or believe her diagnosis. Nothing I said and no written diagnosis I showed her would work. She believed the doctors didn’t know what they were doing. It took me a while to figure out that it’s best to not even try to explain. It usually just causes them to get angry. As far as diagnosis. When I took mom to her pcp and they did the quick test, she did just fine. I insisted on a referral and thankfully they agreed. The neurologist did 2 hours of testing. The results showed mom had dementia, no question about it. In fact it was advanced enough that the doctor recommended mom not drive or live alone. This was only a few months after her pcp said she was fine. With all this in mind I would recommend you find a different doctor. I will attach the dbat staging tool. This may help you with symptoms you didn’t realize were symptoms. It’s so much more than a bad memory. You might point these out to the doctor as justification for a referral. As I said before, I wouldn’t even try to get your husband on board with this. Think of some kind of excuse for the doctors appointment ( it’s a new insurance policy to do cognitive testing after the age of 70). Since presenting all the symptoms you are seeing to the doctor will probably anger your husband if done in the office in front of him (it made my mom pretty mad!), I would write a note to the doctor explaining all your concerns. I found the patient portal worked great, but mom is not tech savvy and I didn’t have to worry about her seeing it. If he does end up getting medication (don’t get your hopes up), you may need to just tell him it’s for his high cholesterol or something like that. You said you need him to be a part of it. I’m so sorry but that’s probably not going to happen. You need to take control and make things happen on your own. I doubt very much there is anything you or anyone will be able to say or do that will convince him there is a problem. Anosognosia is the absolute worst!

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

https://iona.org/therapeutic-fibs-ok/

Rebecca Cook

https://alzconnected.org/discussion/comment/276767#Comment_276767

Wow, I am overwhelmed and devastated. With my own health issues and
severe lack of mental and physical energy, I do not see how I can
handle all of that. My first step is to review our POA and then contact
his doctor again for a referral. What I actually want is for my husband
to change doctors to be in the same medical group that I am in; then it
would be easier for me.

Thank you for responding and sending the
information. I have to have a crown replaced this morning, so I will
start taking steps on this later today or tomorrow.

Victoriaredux

Hello and welcome Rebecca

H1235 gives much info. I understand you want to get cracking on a plan of treatment [none so far as I know are a cure and maybe just delay stages a bit] but with your health is it realistic to try to get into a trial program (if that's what you seek) that would probably involve a lot of visits - some for research benefit versus patient need? It may be more doable to rule out other conditions and then try maintenance meds that would require less travel.

Have you seen an elder law attorney to draft documents so you can manage things solo going forward? At some point his physical needs will probably exceed what you can do and if he is helping you with chores now at some point that will stop or become undependable or unsafe. So planning for future in home care or placement options may be something to consider. With your daughter in England maybe seeking a place where you could be in IL and MC for him in same place. Then you'd have a care backstop for you and could still see him.

I'm sorry this happened to your family.

Rebecca Cook

https://alzconnected.org/discussion/comment/276784#Comment_276784

Thank you so much for your reply! One of the major issues with my illness (MCAS) is that "You're allergic to everything". I have to control my food in terms of what I am able to eat, control my environment, such as chemicals (no bug spray, perfume, air fresheners etc), control my interactions with people (no long visits, no eating in a cafeteria, staying in quiet (no participating in group activities, etc), control my anxiety and all of the other MCAS triggers there is more but the biggest issue for me is food. We have considered AL, but it will not work for me. I will need to look into some form of home care, but first, I need the DX. Right now, I am feeling overwhelmed and self-pressured, which is increasing my anxiety. 😌

I have to have a crown replaced (one of three) this morning, so I will be praying and trying to determine my next steps over the course of today.

persevere

Hi Rebecca, I believe having your dr friend speak with your husband is a good idea. Your husband respects him and you’ve been friends for a long time. Given your physical limitations it won’t be long before you will need to make decisions about either bringing in help or possibly relocating in a manner mentioned by victoriaredux. To me it sounds like you could both benefit from being in an assisted living community that has a MC unit attached. There are many of these around the country. But that’s a huge decision. If you’ve been in your home for a while and love it give in home help a try first. Good luck and keep us posted.

H1235

I’m glad he has a DPOA. That is so important and something I didn’t think to mention. There are so many things to do in the beginning. So many unknowns. It’s a lot of work to figure it all out and while we we can give advice, you know your situation best. Bringing in your family friend may make all the difference or it might be a disaster. There is no crystal ball. You use your best judgment to make the decisions you think will be best for you and your husband. Don’t beat yourself up if/when you make a decision that doesn’t go well. You are only one person and can’t expect yourself to make perfect choices. This is a lot, go easy on yourself.