New Journey Caregiving for friend-former spouse with Vascular Dementia

a083129 · May 7

I can't believe that I am now a caregiver to my ex-husband, who has no other family member, who was diagnosed with vascular dementia. Back in 2022 I thought something was a little off with his memory but just thought it had to do with normal aging. But back in January 2025 something drastically changed. He was not making rational decisions, loads of memory issues, not having normal conversations, lots of confusion and personality changes. The decline seems to be going quicker. He has lots of bladder incontinence. I have to help him with most tasks such as dressing, bathing. I think he could do on his own, but he just likes for me to help him. He has no concept of days. He can't read a clock and understand time. I have hospice care, but is it possible to keep him home until he passes? He had a ICD implanted in January, but it was turned off today so if the heart does have an arrhythmia, it won't shock the heart. We have a DNR in place. How long does a person live with this type of dementia? How hard can it really get with caregiving? I had an aunt who had Alzheimers and her sister cared for her at home until she passed. I think that if she can do it, then surely, I can do that for him, too. Does anyone have any encouraging word for me?

SDianeL · May 7

welcome. Sorry you are here for the reason your ex has dementia. He’s lucky to have you. Caregiving may become 24/7. He may become bedridden and fully incontinent. Each person progresses differently based on the area of the brain affected by the disease. If he’s still eating and not losing weight there is no way to tell how long he will live. Could be days, weeks, months or years. You could ask hospice what they think since he has heart issues. Hospice is very helpful. Take advantage of all the help they offer. Respite care for you to take breaks, volunteers to run errands, counseling and more. Come here often for support.

forbarbara · May 7

welcome, I’m glad you found us. You are clearly compassionate and resourceful. A few thoughts:

hospice is wonderful but has a hard time keeping dementia patients enrolled because of Medicare regulations. They reassess every 90 days and it can be a roller coaster. My PWD was on hospice 3 different times in 2 years.
Caregiving, whether the PWD is at home or in MC, is incredibly demanding, so make sure you include yourself in your care plan.
Use this forum to get support and information, share your insights and experiences. But feel free to rant and snark if that helps.

Good luck and keep in touch

harshedbuzz · May 7

@a083129

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

How long does a person live with this type of dementia?

It's really difficult to answer that question. Typically, those with VD have a shorter disease arc than those with AD. That said, my aunt with VD lived almost 20 years after I suspect her husband recognized changes but didn't seek a diagnosis. I would say she was in stage 6 for close to 5 years and in stage 7 for 2 1/2. Dad, who had mixed dementia, was in stage 6 for about a year and stage 7 for a couple weeks. He died the evening before his hospice evaluation. Sometimes another medical issue can impact longevity and act as a kind of exit ramp before the final stages. Heart disease could be that for you.

How hard can it really get with caregiving? I had an aunt who had Alzheimers and her sister cared for her at home until she passed. I think that if she can do it, then surely, I can do that for him, too. Does anyone have any encouraging word for me?

It's best not to compare your situation to that of any other caregiver. Every PWD will present differently, and every caregiver will bring unique skills and circumstances to the party. Sometimes a care-resistant PWD is better served by a MCF or SNF/hospice house than at home. Sometimes wandering or lack of ambulation makes a secure unit safer for both parties. Plenty of people do manage to have their LO die at home, but sometimes it doesn't work out that way.

It's best to have a Plan B. Who would take over care if you were unable to provide it? In your shoes, I would tour a couple places and get a sense of what you'd choose if you became temporarily or permanently unable to continue.

HB

MaryMN · May 8

It sounds like he has two separate issues - his heart and dementia.

As the others have said, there is no predicting how long somebody with VD may live. However, if they shut off his ICD, the next time his heart goes into arrhythmia it may be fatal. My father (who did not have dementia) had his ICD shut off and he passed away 2 weeks later. He was ready and said it was preferable to being shocked again, which he said was extremely painful.

Praying for a peaceful journey for you both.

a083129 · May 9

Thank you all for your comments. I have been praying every day about this situation. For now, I feel and experience the strength of the good Lord. I can't do without His guidance and the insights of you all. My heart is at peace, at least for this moment.

I know he doesn't recognize me on most days. He thinks I am someone else. That's been hard, but I have now accepted it. When I look at him, it is like the "lights are on, but nobody is at home". He doesn't have a clue that anything is wrong, and this is probably a blessing. He can't seem to communicate to me that makes any sense. I am sure to himself, he understands, but he doesn't communicate clearly at all anymore where the conversation is normal and understandable. I keep telling myself "He can't help it. His brain is dying and there is nothing you can do except to be loving. He just can't help it, and it is not his fault". He still understands and responds to hugs and affection. Yes, I know he is my ex, but I still love him dearly. I have often thought, because of what psychologist told me regarding the CT brain scan, that he was having mini strokes, though without noticeable symptoms, for decades. I was shocked when he broke that news to me, and it is not uncommon when a person reaches 40 years old. That was another shock to me. This makes me wonder about the divorce because there was no reason for it. Makes me wonder if his mind was starting to go then and wasn't thinking clearly. His bull headedness insisted on separating the assets. I have to let that go too. I have grieved over that enough. Now, I am grieving over the death of his brain and his final breath.

Hospice nurse told me to start giving him the lorazepam every morning and every evening before bed. That will help keep any agitation and confusion at bay. I just started that today. I have been worried over the side effects or dependency of it.

If I may be honest, he used to joke, because he was so active and energetic, he used to say "if I can't continue to live an active life then it is time to go". Then he would joke on how he would end his life, which I didn't think was funny and took very seriously. It is a good thing that he doesn't understand or know that things aren't normal anymore. At least I do not have to listen to that morbid joke. But I heard his heart years ago when he spoke of continuing an active life until the last breath. For him, I hope his passing can be sooner than later because if he truly knew that there was something seriously wrong with him, he would not want to live. I know that. This is not the life he ever wanted to live. He wanted to end strong and to just fall over and go. Every time he walks, he breathes heavy. I can see he is tired.

I can only hope that the mental decline is such that I can keep him on hospice.

Thank you for caring and listening. It means more to me that you could ever possibly know.

ronda b · May 9

Please do not worry about addiction. Give him what ever it takes to keep him comfortable. He will not get better but he will be comfortable and loved.

New Journey Caregiving for friend-former spouse with Vascular Dementia

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