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My spouse has dementia. We found out last year that he is early stages, but in this last year he has forgotten more, has more difficulty figuring things out, but still can do everyday tasks and drive. Has trouble with words. I know I’m being vague, but it’s so much that I am everywhere with I want to say. So in short, how do I deal with the changes as sometimes it’s like I’m around a completely different person?

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If it were only your husband becoming a completely different person it would be difficult but you are becoming a completely different person within the relationship as well. Speaking for myself, holding on to who I am, or who I’ve always thought I was, doesn’t seem possible. But I am speaking from the middle of this ordeal when my husband’s decline is acute and all-consuming.
There are many on this forum and in your local support group who have seen it through to the end and come out the other side as whole, beautiful people, full of wisdom. My hope is that you and I will too.

Just as a practical suggestion, as you read through topics on this site and elsewhere, start a notebook. Keep lists of milestones reached and tasks you need to take over. Finding a way to keep your husband from driving is tops. Getting a handle on all of the financials; researching care options early in case you have to move quickly; consulting an elder law attorney, etc. As my husband declined I felt so overwhelmed and unable to focus that a list of obvious things like paying the taxes or even buying lightbulbs, checking smoke detectors, getting the trash to the curb on the right day, were helpful.

One other thing that was important for me, in the beginning especially - give priority to posts and comments by people caring for spouses with dementia over parents with dementia. Although there are overlaps and value in everyone’s care experiences, it really is a different set of relationship dynamics that have to be navigated as your husband begins to let go of things that have defined him and you have to take up the slack.

This is a hard road KitKat, I wish you the very best as you travel it.
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graygrammie Jan 27, 2025
Well said.
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You "cope" by taking one day, one minute and sometimes even one second at a time.
You also "cope" by taking care of yourself in whatever ways you can, as you matter too in this equation. And this should include getting involved with a caregiver support group either in person or on Zoom.
Then you "cope" by not allowing your husband to drive AT ALL, as someone driving with dementia is no different than someone driving drunk or high on drugs.
You would feel terrible if your husband would kill or injure some innocent person because you allowed him to drive. Plus you could be sued and lose everything if it were to be found out that he was driving after being diagnosed with dementia.
This is not an easy journey that you are on with your husband, but you will survive, and will come out of it a better, stronger, and more compassionate, and empathetic person when it is all said and done.
So hang tight as this too shall pass.
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KitKat — you have my profound sympathies. My dad was clearly losing his grip by 2020 and was diagnosed with frontotemporal dementia in Jan 2021. My mom said all the same things you are saying. She was completely bewildered, upset, confused, sad, angry, and everything else and had a lot of trouble accepting and comprehending what was happening as they had been married 50+ years. She was in denial for awhile and resisted even getting him diagnosed. So you are ahead of the game there.

She often felt he had been taken over by a “pod person” in the shape of the man she married. He became very selfish and did all kinds of dangerous, crazy, and totally exasperating things the exact opposite of his former self. It drove her around the bend. I felt like she was on the brink of a nervous breakdown at many points.

Diagnosis was hard. Taking away driving was very hard. Taking away his control over finances was very hard — but necessary. I urge you to familiarize yourself with your bank accounts, any IRAs or investment accounts, social security, any pensions, and credit cards and taxes and at a minimum, monitor them carefully and regularly because he WILL lose the ability to manage these things and trust me, you don’t want to learn this via finding out he has made some terrible mistake costing you tens of thousands or worse. The mail is another thing my dad went weird about. He would rush out and get it first and then hide or lose important things.

My mother was never comfortable with the idea of a support group, but you have taken the first step by posting here. Continue to read old and new posts on here. As others have said, there are both in real life and online support groups for the various kinds of dementia. His doctor may also have social workers or nurses who can recommend things in your community for support. It’s a long road and YOU need at least as much support as he does. I am firmly convinced dementia is harder on the caregiver than it is on the affected person. Do you have adult children or relatives who help you? Or friends of the family? Now is not the time to go it alone.

lastly, sorry to add to the very long and seemingly overwhelming list of to dos but at some point you should look at your wills and DPOA and health care proxies. If you were to become disabled even for a short period (such as needing an operation) you may no longer wish to have him be the person in charge of making decisions as he probably cannot really fully understand.

best wishes.
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graygrammie Jan 27, 2025
I can so relate with all you wrote. You said it well.
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He should not be driving. He has trouble with words and he has difficulty figuring things out. This means he is a danger to unsuspecting innocent people who are also on the road driving. You do realize if he doesn’t get into a wreck or drive the wrong way on the road that he will likely get lost one day and what will you do when that happens? Getting lost while driving happens in the early stages and is often times the first sign of dementia.

it doesn’t answer your question, and hopefully someone will be by soon to help with that.
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MG8522 Jan 22, 2025
If he causes a car accident, your insurance may not cover it.
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You are grieving a major loss in your life.
And, with dementia, it is at times in slow motion, making it more agonizing for you.

No, you aren't being vague. We understand.

The sad reality is that you are around a completed different person as his brain continues to change.

I sense everyone has their own way of dealing with this major loss, however I would encourage you consider:

- Your own pain and grief. Do not stuff it in.

- Gain support wherever you can find it (neighbors, friends, church, social networks). Not everyone will understand or get it. Be selective on who you talk to. You are very vulnerable now and need to be around compassionate, understanding, caring people.

- Get into therapy if you feel it could support you.

- You need respites - time for yourself, with friends, or alone.

- I feel that allowing him to drive is a red flag. If your husband is diagnosed - or even if he isn't - you do not want to potentially put him or yourself in danger (if you are in the car w him when he's driving), or injure others. Ask his MD about him driving.

* Expect that your husband will resist change(s). He will both be aware of losing his independence as well as being more confused and unable to cope. He may take it out on you.
- Know that he is doing the best he can; as well, do not put yourself or him in a dangerous situation - be it driving or handling finances, or even answering the phone and getting scammed.

You will (continue to) need to set boundaries as he continues to change.
You will have to be 'in charge,' 'in control as perhaps you are not used to - he may / may not want to make decisions that are not in his best interest or yours.
- He may get upset / angry at you as you are in 'the line of fire.' The person closest is the one who is the recipient of frustration / pain / fear.

The short answer of how you deal with the changes:
1) Take a moment at a time.
2) Take a situation at a time.
3) Stay as present as you can.
4) When you are triggered (emotionally or otherwise), step back for a second or two to 5-10 minutes as you can to regroup / collect yourself.
- Get help in... you cannot manage this alone. You need time outs. What you are going through is exhausting in all ways (mentally, emotionally, spiritually, psychologically).
5) The hard part: accept what is ... feel it... do not try to stuff in your feelings. Allow them to be very present. Stuffing them in will not serve you. Get the support you need to stay / be your 'whole self' through a very difficult time.

6) Be very (or more) self-compassionate. Know that giving yourself time to regroup / and take breaks from this heartache is healthy for you ... go out to lunch w a friend(s), take walks in the park - take a relaxing bath, go to the gym - whatever brings you some pleasure and takes you out of the day-to-day needs of caring for your husband and grieving. You need to reset for your own well-being. And, when you take care of yourself, you will be more present (and available) to be there for your spouse.

My heart goes out to you.
Gena / Touch Matters
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Driving: Has to stop. Spouse becomes chauffeur. White lie if necessary e.g. "The doctor ordered it", then change the subject: Don't argue.
Overwhelmed with tasks: Ruefully I realized it is "My" household now, a blunt truth after 52 years of marriage, (to the same person). So now I get to decide what to delegate: she balanced the check book, I can do that; but now I don't have time to clean windows so that will be contracted - or left undone. ... Starting with a tasks list reveals much. And "good enough" is my new mantra.
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Take time to grieve that your relationship with your husband is not the same as it once was. It takes time to accept this. You are not alone, and I hope you can find a support group or spiritual advisor (if you are religious) or a therapist who can walk you through this difficult time.
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Year 7 of my mother’s Lewy Body. I sought counseling. The anticipatory grief was so harsh for me I needed help. I have the shell of my mother but she is not my mom. Tough to get used to. This is a very rough road. Get help. Good Luck. PS: two years of counseling and I can separate myself from the Lewy and I feel so much better.
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Reply to Sadinroanokeva
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Dear KitKat, My husband had vascular dementia for seven years before he passed away. The last two years were very difficult. My sweetheart was gone. He did not remember our children. I'm not sure he even remembered me, I was just always here. Even though he was literally "gone," he seemed happy most of the time. Get some help if you can. He had long-term insurance and I had a caregiver from an agency come for 20 hrs a week. As things progress, treat him with love and respect, you don't want any regrets. This is a wonderful site to vent and get information. Everyone here is more or less on the same road. (((( Hugs to you))))
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Reply to Grannie9
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KitKat, you are not alone in this journey but when you lose your life partner you feel alone. There are many of us on the same path. Take the advice from others and make safety a priority. That means he has to stop driving. Get him on medication to keep him calm and happy. Focus on the moments of love together that you still have. Start planning your future. As others will tell you, you have to be in charge. His executive function is going so he cannot make good decisions or plans. There are a few things that might slow down the process, but there is no cure. This is so hard. Give yourself all the love and support you can, and do things to make yourself happy. He would want that if he could understand.
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