So happy to have found this group!

allendswell · October 30

Hi, All,

I just joined this group. I posted the following as a reply in another discussion and someone suggested I create a new discussion to introduce myself:

My partner's neurologist just moved his diagnosis from Mild Cognitive Impairment to Alzheimer's. This has been reported by law to the DMV and he will be heading towards reexamination for his license soon. I have been dreading this since driving is one of his main pleasures and he's a very good driver but I am pretty sure he will fail the written test if not the driving test since he gets so anxious. Since I am in a wheelchair and do not drive this will change our world in a real way as a couple but mainly it will take away something he truly loves and allows him to go hiking in the area. I am going to have to figure out new ways of transportation and I am resourceful, but mainly I worry about how this will send him into a tailspin.

In addition, he has 7 children from another marriage and they all live in our area but are starting to avoid their dad because they just don't want to deal with it. And when they do, they do it in a large group and he gets no interaction. And I find myself feeling resentful towards them because they are always pushing for some big plan but do nothing proactively to just be with him now. I keep saying that this is the time to spend with him, not later.

I think the toughest part of it all is his increasing difficulty communicating what he needs or is trying to say, as well as his challenges in understanding instructions. It continues to be such a learning curve. When someone is over at the house and I ask them to get something very simple and they do it with no effort or conflict, I feel such joy!

Gosh, it is so much. I know it sounds silly but I chose not to have children in this lifetime and yet I feel like I am living with a teenager and am super irritated at that. The level of patience and selfless giving that this is asking of me is not something I signed up for, and yet I promised I'd be there for him and so I will. Having a progressive disability myself, I get how the parameters shrink and what that feels like. He has a lot of courage and I'll be there for him, whatever it takes. But wow. It is starting to get very real and I need to find more support. Big hug to everyone! I can tell you all are good people trying to do the best for someone you love.

cdgbdr · October 30

I'm so glad you found this group. It's interesting that in my state, it doesn't seem to be the norm to contact the BMV when the PWD is deemed unsafe to drive.

allendswell · October 30

cdgbdr, it's a blessing and a curse all rolled into one neat package.

charley0419 · October 31

Not driving was the worst for my wife, but I feel for you as my biggest fear is not driving.

annie51 · October 31

My DH was told to have a “DriveABLE” test (a computer based test) or else he would be reported to the DMV (that’s what the law is in Florida). DH didn’t understand why he couldn’t just take a regular driving test and refused to take the DriveABLE test. Based on what the test is like, I’m pretty sure he wouldn’t have done well on it anyway. He was still a very good driver so it was hard to see him go through losing his license but as hard as that was, he did adjust to it (quicker than I expected). Knowing the driving thing would happen sooner or later, in hindsight I was glad to get it over with.
@allendswell, I realize it will be a much harder adjustment for you since you’re in a wheelchair. Maybe his children can be transportation for you two? With seven of them, it shouldn’t be a big burden on any one of them. My thoughts are with you as you go through this time - it’s one of the most dreaded things with this disease.

BPS · October 31

We used to go out to dinner once in a while with 3 of my wife's siblings. 5 or 6 years ago I told them that if they to have a relationship with their sister now is the time, while it will be meaningful to her. None of them understood what was going to happen (I don't think I really understood either). None of them put any effort into spending anytime with her. They still don't, but I don't think it would really matter now. She doesn't remember 10 minutes ago gets people mixed up. The same thing happened with our daughter. During covid I asked her to not let her mom feel a banded by calling and staying in contact with her. My daughter didn't until I said it doesn't matter anymore because she won't remember it. That is when she finally started to see her mom more. It hurts when you can see kids missing their last chance to matter to their parent, but I think all you can do is tell them and then it is up to them and not worry about that anymore. I say that and think that but it is still hard to see it.

WIGO23 · October 31

I am sorry you have had to join on this journey we are all on. My DH was diagnosed with ALZ a year and a half ago. He stopped driving immediately because he realized that he might be a danger to us or someone else since his reaction time, visio- spatial senses and even directional senses were already being affected. I was lucky that he gave up driving voluntarily. He misses driving and we sold our camper because of it. I cannot do all the travel driving alone and managing the larger camper was not something I felt comfortable doing. We now take shorter car trips and stay in Airbnb’s.
I wish you the best as you navigate this journey! Pun intended!

M1 · October 31

Welcome to the forum. I am so sorry that you have your husband's illness to deal with as well as your own. All the more reason that you need to be extremely proactive about future planning, as the day will likely come sooner rather than later that you will be unable to meet his increasing needs, and he will not be able to help you- the driving loss is sadly the tip of the iceberg in that regard. From what you describe at home, it sounds like this is already happening and you're aware of it. Have you thought about perhaps a move to an assisted living situation for both of you? Is that financially feasible? Not at all too soon to be making those plans. I wish you well.

allendswell · October 31

https://alzconnected.org/discussion/comment/227019#Comment_227019

BPS, yes, all I can say is "this is the time." The rest is up to them. At the same time, I can relate since my Dad has dementia issues at the end of the his life. Granted he was in his 90s when that started, but watching the highly intelligent and funny storyteller disappear was very very sad. And my sister had to deal with him directly since I was across the country and not able to travel independently. I now see what she was going through with him and appreciate all her efforts even more.

allendswell · October 31

Assisted Living is out of our reach financially, unfortunately. I would have purchased long term care insurance but my diagnosis ruled that out. I did just buy a house last year with a second bedroom so that we could have some in home care as that starts to be needed. Yes, the tip of the iceberg for sure. I am in the planning phase right now. It will be on me since none of his family has any money and most struggling.

allendswell · October 31

I love puns - good one! I am kind of grateful that it will be the DMV saying he can't drive anymore and not me. My focus right now is lining up various transportation options and companion support etc.

allendswell · October 31

Thanks annie51, unfortunately his kids think that driving 35 minutes to our house is "too far." But I will be working to enlist them as needed. They're not all very reliable although good people. I will figure it out though.

allendswell · October 31

Thank you all for your comments! Really means a lot to me. I wanted to add that I am in wheelchair as a result of being diagnosed with Muscular Dystrophy at age 30. I've gone from being able to walk with a cane, then a walker and then to a wheelchair in 2019 for safety reasons. Thankfully it progressed slowly over those 33 years and I had time to accept the changes and find creative solutions. I think my challenge with my partner's condition will be to find solutions that are flexible and focus on safety first. I really pushed the envelope with my own mobility, I have to say, to continue to do what I wanted to do is some fashion.

Just being able to write this and have you all hear it and get it is such a gift. I head up a disability inclusion group at work and I always say that's the biggest thing you can do for someone living with a disability - listen and hear it with empathy and awareness. I've spent a lot of time creating a space for that with that group and it great to find this community where the same thing is available. Trying to focus on gratitude rather than fear, but that doesn't always keep my head on straight. Look forward to contributing here with all.

baytown101 · November 1

https://alzconnected.org/discussion/comment/227036#Comment_227036

Does anyone have a husband that is a drinker also? He wants to keep drinking and that is hard to control. Advice?

SDianeL · November 1

welcome to the place for info and support. In home care is very expensive. At some point your partner will require 24-7 care. Is your partner on Social Security? If not he should apply for Disability. Then get Medicare. Also if you qualify financially for Medicaid they pay for more things. Transportation may be available in your area for people with disabilities. Read the book “The 36 Hour Day” and ask the children to also read it. Many family members don’t visit or help because they are avoiders or are in denial. They also have their own lives. Many people on this forum say they can’t depend on them to help. So sad but true.

Carl46 · November 1

Baytown, I have no experience with alcohol abuse, but I suggest you start a new discussion (yellow button on screen) so more people will see your question. I know some members have discussed this problem in the past.

So happy to have found this group!

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