New Here - Lots of Questions

Hi - welcome to 'here', but sorry for the reason.

That it is good that your paperwork is in order. very important.

Would he actually go to a doctor if you or his daughter told him it is required for insurance? There are many other things that can mimic dementia and could be treated, but he needs to go to a doc to find out.

Another concern is if he is driving. If he is getting lost like that in a grocery store or your cruise room, that isn't a good sign. It wasn't until after we took MIL off the road, for getting lost, that she finally admitted that she came to an intersection and forgot what to do.

Welcome but so sorry that you need to be here.

Other members will comment with advice and suggestions. I will just add my concern along with @SusanB-dil ’s regarding his driving. If your LO has some form of dementia, memory is not the only thing that can be affected. His spatial awareness can be impacted as well, so his driving will be fine right up until the moment that it isn’t when he is unable to react to a sudden event, be it a car changing lanes or a child running into the street after a toy. And someone might die because of this.

Taking away a person’s right to drive is often a battle. It sounds like your situation is even more dire because he would give up insurance rather than visit a doctor(and there are some treatable health issues that can mimic dementia symptoms, which makes his refusal to see a doctor even more tragic).

You mention you have a POA. Is it a Durable POA? If not, you will want to get that so that it remains valid when he becomes incapacitated. Also, if it is a DPOA, does it have any “springing” requirements such as a formal diagnosis of physical or mental incompetency?

when you discuss his memory issues the next time, tell him that blood tests can determine if he has a low B12 level or a thyroid issue. Both can cause memory symptoms, but are easily treatable. Tell him that getting those tests done and getting treated mean that he can continue to drive and travel - that otherwise his condition will get worse and that he will soon have to give up driving and traveling. Do not use the word dementia. Because stubborn people just balk at that.

You really should step back and rethink what you want out of your future. If he has dementia, you are going to have to step up and be the adult and the decision maker. Possibly for your entire 70s. He won’t be able to make the decisions and have you just go along with his wishes. Your retirement won’t continue to be travel and this disease can make people poor.

@hogladyrider welcome to the forum and I am sorry that you are experiencing this, I am sure it is extremely stressful. What you're describing definitely sounds like my mom in the early stages, but I kept questioning myself because 99% of the time she was still herself (and as strong willed and independent as they come!) I wish I had listened to my gut and pushed for testing earlier, but I know it can be so tricky to force these issues. My mom also loathes going to the doctor (and still does, it's WWIII every time we have to go to an appointment).

I feel like the most stressful time for me was during the months when we suspected but did not have a confirmed diagnosis, so I totally understand how this is causing you the most stress right now.

If your partner isn't willing to go to the doctor and you have already decided not to push, I think the most important thing you can do is prepare yourself for what's likely to come, and it sounds like you're already doing that. I would also encourage you to prepare for his/your safety, as others have mentioned above (think about things like the stove, power tools, etc.) - I personally didn't think about these practical every day safety issues, but I'm learning with my mom that this is hugely important. She seems to be completely fine and sound of mind, until suddenly she isn't, and that's when disaster happens.

I will also emphasize the comments above about driving - this one is a major safety issue. Shortly before my mom was diagnosed, a friend's dad caused a huge multi-car pile-up accident with multiple major injuries, causing a lot of thorny legal issues for the family to deal with. He was in his 80s and had a completely clean driving record but had recently been diagnosed with dementia. This scared me enough that when my mom was diagnosed, we took the car away immediately. She was not even the least bit cooperative, but I could never forgive myself if I prioritized her feelings over the safety of her/others (our dad died in a car accident 30 years ago, so it is especially personal for me). I know others on this forum have similar stories about accidents that could have been prevented and it is horrible to think about. Definitely keep this top of mind as you navigate your situation.

Good luck and I hope you will continue to use this forum as a source of information and support, it has been a huge help to me during some really stressful moments.

Please read a lot of threads. Your situation is not all that different from others. Also check out the Spouse/Partner board.

Iris

No judgments - only suggestions - because most of us have been there/done that and are working from experience. Your S.O. is blessed to have you in his life.

I agree health care in this country is a problem. As much as you want a true diagnosis I think if it has always been his longstanding feelings to not see a doctor then maybe you need to accept his wishes. I imagine it would be very hard. Glad to hear a plan B is in place and that he is happy. The anger and arguments that would come with fighting him on this might not be worth it. Enjoy your time with him.

I am so very sorry you felt attacked and/or judged. It seems some people that are new to the forum are absolutely clueless on what’s happening to their LO and how to manage, hence some seemingly abrupt advice. IMO most everyone who provides answers/support here are compassionate and wise. I appreciate that some have difficult caregiving days too and may seem curt but their hearts are in the right place. Many are already in stage 8, having had their LO pass, yet still come to offer assistance because they’ve been in the down and dirty, made their mistakes and want to help whomever detour from the same.

You seem to have a clear understanding of where you and your partner are, except for the diagnosis. Lots of forum members don’t think an official diagnosis is needed, others do. You’ve thought things through and reflected on your life, you’re steps ahead, leaps ahead of some that come here and are blindsided by what is happening and going to happen to their LO. It is a steep learning curve for many, it was for me.

I’ve done my best at not taking things personally here and not judging others in return. We are all just doing the best we can caregiving within this disgusting disease. This forum was a lifeline for me throughout my journey caring for my mom at home til the end. I’m in stage 8 and still here…it continues to remind me I wasn’t and am still not alone. So many of the supportive posters are much more knowledgeable than I. Dementia does have some similar behaviors and symptoms shared between the afflicted yet no two dementia patients are the same nor are the caregivers or living situations.

You, of course, know your partner better than anyone and you’re strong and already have knowledge. I hope you will find yourself coming back here… you sharing your experiences also help others that may be struggling. I’m very sorry you are facing this heartbreaking journey.

@hogladyrider Will just pile on with what others have said - there's no judgment here, this is intended to be a safe space and a place for information and support. I am truly sorry you felt attacked.

I personally put a lot of thought and care into my response to you last night. I can't speak for everyone and have no idea if mine is the one you reacted to or if it was something else, but I can confirm that my response was definitely coming from a place of care and support, not judgment.

I will be honest that I was thrown off when I woke up and saw your response this morning - this is an extraordinarily difficult thing that we are all living through every single day, and we are all just doing our best to support and help each other here. I am relatively new to the forum and it hasn't been easy to share with others, so this made me second guess whether or not it was worth it to open up and share. Then again, I had no clue on any of these things when I started this journey with my mother, and I was grateful that others shared their experience and knowledge with me so that I could do what was needed, so I was just trying to do the same. The issues that we have all raised are very real for those living with dementia - it sounds like they don't apply to your situation, but we are all here to discuss Alzheimer's, so I think that is just naturally the perspective we are all coming from.

It sounds like you've got a handle on things which is amazing, and you're ahead of the game on all the fun legal and financial stuff, so you're in much better shape than where many of us started. I truly hope it turns out to be nothing and no matter what happens in the future, it sounds like your partner is in really great hands, and as others have said, this community is here if and when you ever need it.

@hogladyrider - welcome, but sorry you have to be here with us. Honestly, I think you've got this! We hit this stage with my partner just as the pandemic began. We found things to do together that maybe we wouldn't have done, or done the same wsy - hiking, biking, projects, artsy stuff, etc. It was a time of great memories for me, along with some scary stuff that preceeded it (getting lost, multiple times and ways...) Take this summer together and do the things you enjoy. Live each day as it comes. With or without a diagnosis you see the person in front of you, you seem to have great insight into what makes good days and bad days. You can try to find the good moments or you can get dragged down thinking about what's to come.

Maybe a tangent: if I ever get this disease, I think I'd go "no meds" too if I could do it without making my caregivers miserable. I would want to get it over with. I hope my family would respect my thoughts on the matter as you are for your partner.

hogladyrider, I've been exactly where you are. We were full time RVers since 2003. My husband Lonny (78) is a Vietnam Vet Marine. He started having symptoms a few years before I finally got him to a Neurologist. The situation that got my attention was when he asked my daughter what her brother was to her. (She is his step daughter) and he couldn't understand relationships. He started driving more slowly and hitting curbs & was always a good driver. He could no longer do maintenance on the RV. He would lose things. He couldn't read his analog watch. He could no longer spell common words. I got him an electronic spell check device & he couldn't understand how to use it. He was having trouble using the cell phone. I contacted his Primary Care Doctor and asked for a referral. Since your LO doesn't have a primary that obviously won't work. I found that bringing things up on different days worked with Lonny. He didn't want to go for testing but I explained that if he has a "brain" problem that we needed to know to plan for that. He took the 4 hour testing by a Neuro Psychologist & the results terrified me. She said that under NO circumstances should he be driving. His visuospatial reasoning was terrible. She said it was a matter of time before he hit a car or someone. (Hence his very slow driving and hitting curbs). I explained to Lonny that if he were in an accident, even if it wasn't his fault, we could be sued and lose everything. The next day he gave me his keys. We sold our RV & I moved us into a 1BR apartment. That was July 2022. Late last year I was diagnosed with aggressive breast cancer and had to place him in memory care facility. Hardest thing I ever did. As you know, this disease progresses differently with each person. His deterioration could be quick or slow. Please stay in this group. It helped me more than anything. Please keep us posted. Read the book "The 36 Hour Day" - it was recommended to me by a nurse. It also helped me.