How do I cope with my spouse changing and disappearing before my eyes?

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.

This is very painful and I sympathize. You can find support groups both in person and online, for families of people with dementia and for spouses of people with dementia, both general groups and groups based on the particular form of dementia. I suggest trying a few until you find one or more that fit well. Try them each more than once, since it's a new world and can feel so bewildering.

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.

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.

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.

Dont let him drive anymore - they forget where they Park , The battery dies , They stop On the Highway - Lose Keys , Park On the side walk . You have to have a lot of Patience and Empathy - it is Like dealing with a child because they no longer Have full brain capacity .

How does anyone cope with illness of any kind? One day at a time, with prayer and by living in the moment and seeking respite from caregiving.

Please take over the driving now for your husband. Allowing him to drive with a diagnosis of dementia that's worsening is a negligent thing to do.

Pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and how to deal with your husband. There's a chapter in there that addresses driving and how to segue into taking over that task for your husband.

Best of luck to you.

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.

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

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.

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))))

There might be a support group in your area. The Alzheimer's Association often has them. Some meet in-person and some meet online. My late husband had frontotemporal degeneration and I went to a dementia/Alzheimer's support group in a Methodist church. They provided activities for the person with dementia/Alzheimer's while their spouses/children/siblings/partners met. The church didn't care what religion you were (we're Anglican, not Methodist) or even if you were religious at all. They accepted donations to cover the costs of coffee, tea, bottled water, and snacks, but they didn't require them. I made two friends there (their husbands had mixed dementia and Alzheimer's) and I remain friends with them today, even though our husbands died between three and six years ago. This church also had an adult day care program, something else for you to consider.

I remember my wedding vow. In the name of God, I take you to be my wife, to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and health, to love and to cherish, till death do us part. This is my solemn vow.

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.

KitKat - my heart aches for you. It's a hard road to walk. My husband suffered with dementia for 10 years. The only good thing is that the gradual nature of the decline enables you to face the challenges that increase over time. I wish that I had been more proactive in researching Memory Care facilities. I thought I could handle it myself (until I couldn't anymore.) There comes a time when you will need more help. Please be open to that for your sake. You matter! May God give you wisdom, strength and a sense of His presence with you as you go through these difficult days.

I cried a lot. My husband's dementia came on suddenly after suffering a massive stroke and he became much like a helpless infant with a bad attitude, needing 24 hour care.
Oh how I've missed the man that he was! I still cry sometimes, but not as often.
It's been 10 years now, and we have settled into our new normal routine. It's a hard routine, but I'm happy I get to interact with him every day still.

Now you can tune into him, look to him for cues as to where he is at mentally as well as physically. I would caution against letting him drive. What if he suddenly becomes confused while operating a motor vehicle in traffic?

You will have to learn patience. It may take him longer to form the words he wants to communicate. And don't bother arguing with him or correcting him.
It will only confuse him more, and add to your frustration.
As his confusion progresses, you can enjoy simple activities with him. Taking a walk in the park, Playing simple games, maybe even games geared toward children, looking through photos, sharing your favorite memories. Even if he doesn't remember, he may enjoy hearing you tell about it. He may be more content to watch simpler movies. Nothing too complex or scary. My husband went through a years long phase where he watched animated adventure movies featuring animal characters. And he would watch the same movie over and over, much like young children do.
He has graduated to some more adult type television shows and movies, but he likes to watch the same thing again and again. I think he finds comfort in knowing the story; it feels familiar to him.

I'm so sorry you are going through this! It's ok to grieve. It feels funny to mourn the loss of someone while they are still living with you. But only you know what you have lost. Reach out to a friend or therapist you can talk to about how you feel. And of course, you can always reach out in this forum for support. Or find a local support group to meet in person with people going through similar experiences.
Don't neglect to take some time away for yourself. Go have lunch with a friend, or go shopping or for a walk by yourself. Just getting away for a bit from the reality of watching your husband decline can help you keep perspective on your life. And if it becomes too burdensome, it's ok to find a nice memory care home for him. You might even consider the option of both of you moving to an assisted living apartment, where you can be together, but get the help you will both need as he declines further.

Kitkat1968: Continue to show love. Seek respite even in small amounts.

Mu husband was diagnosed with early stage Alz with lewy body tendencies. That was Nov of 2022. In November 2024 he passed away after struggling horribly with what had to be the lewy body. After a really bad fall, taken to hospital by ambulance and a 3 week stay which included some rehab, the doctors and PT people told me do NOT try to take him home and care for him. For once in my life, I listened to the good advice I was given and had the hospital arrange for nursing home care. He hated it and I did too. I'm so glad that I took the advice given. In May we went to the neurology clinic that was treating him, they told me do not under any circumstances attempt to take him back home. The trip to the clinic was awful, he was in a lot of pain, couldn't really understand why we were there. He was transported by the facility van so he was as comfortable as he could be down and back but it was a long day.
I applied for and got him moved to a wonderful facility only 5 minutes further from the original nursing facility, the other place was far from adequate. He had wonderful caregivers and for a while he seemed to do well once he adjusted. He took a sudden downturn. He became extremely violent, yelling, acting out, saying inappropriate things. I prayed they didn't tell me he had to leave. We hung in there together like we'd always done in the past when a problem came up. I went to see him nearly every day, only missed 4 days in the 9 months he was in care. No one can say it was easy, but I hope he died knowing that I loved him to the end and still do. As you say, he became someone I really didn't know but he was my love and I was there till the end. There were days I had to just get up and leave when he became so verbally abusive I couldn't deal with it. If he could have gotten out of bed he would have been physically abusive although in the 62 years we spent together he had never touched me in anger. I know it was the disease but it's beyond heartbreaking to live with the anger, the accusations and just the pain of seeing him slip away day by day. Please care for him as long as you safely can, then open your mind to moving into a good facility. Even with in home help which you will absolutely need, when it is at home, you have no way to get away from what is the constant anger, yelling and turmoil. Also trying to get good reliable help for round the clock care would be nearly impossible and you will need help.
I had hospice come for him there and they worked with the nurses and at the end he was finally calm. I stayed with him the last two nights and am eternally grateful that they allowed me that privilege. Our experience was very aggressive and most patients last much longer than our experience but as much as I miss him and the pain of losing him can be debilitating, I wouldn't want him here now, that would be selfish of me. We both suffered terribly. You have to remember that no matter how hard it may be for you, imagine how horrible it is for him. I truly hoped that he didn't know how he acted before we got to the end because I know he loved me. I just can't begin to comprehend the chaos that was in his mind. When he is gone, the bad things will be ok and just focus on all the good memories you have from earlier times.
This post is maybe off point, but I feel better for telling our story and hope that although it isn't fair at all, you will come out on the other side. I look forward to seeing him in a better place.

You are going through a grieving process - the loss of a cherished person in your life. Grief usually follows through 5 stages:
Stage 1 - Denial - the shock and difficulty believing that this loss is permanent.
Stage 2 - Anger - the feeling of outrage that this "shouldn't" be happening.
Stage 3 - Bargaining - the desire to find any possible way to return things back to "normal".
Stage 4 - Depression - the feelings of sadness and loss that this loss is permanent
Stage 5 - Acceptance - finding peace in the loss and finding ways to live with it.
Please research and ask his doctors for more information about the most likely path his dementia will take. Then, you can know what to expect and make plans for each stage of his illness.
Realize that your spouse is still your spouse and still an important person in your life - as you are in his. Enjoy what he still has. Find ways to work with what he has lost. Since you were not specific with his issues, I won't go into coping strategies.
Keep in touch with this online forum as well as any in-person groups to help support you in this journey.

Here is a link to a great resource for support:
https://leezascareconnection.org/home
In fact on the home page there is this link:
"Strategies for Coping"

Leeza Gibbons won on Celebrity Apprentice and her winnings went to her foundation that supports Leeza's Care Connection Centers that honor the memory of her mother who had Alzheimers.

There are local support groups at the center in California and here in SC where I live. I believe each support group offers attendance virtually. Even though I am local, I mainly attend virtually because as a caregiver it is hard to go in person.

Many of the programs presented at the centers are available on her YouTube channel:
https://www.youtube.com/@leezascareconnection

My favorite ones are "Sensitive Situations in Dementia Caregiving" presented by the Community Development Director at a local Memory Care Facility.

For anyone caring for someone with Parkinson's (even without dementia), there is a group just for you.

Contact either center and they will be glad to put you on their email list that tells about upcoming programs.

Sorry that your spouse has dementia, which means a broken brain l, and is not your same husband anymore. The first thing to do is to disable his car so he cannot drive anymore. He may need memory care at this point where he is safe and you are both at peace so he does get into an accident that may kill innocent people. As some readers in our forum have said, you both can be sued for all assets you own if he continues driving and gets into trouble.

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.