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senior75f Asked May 2015

l cared for my husband for 18 years. He is a stroke survivor with some vascular dementia. How to deal with the grief?

He recently had another one & had to go to hospital emerg in Ambulance. It's as though its all happening again. I'm very down and exhausted. He's been in nursing home since 2014.
He was 53 when first stroke/bleed occurred. still only 72.. My life has been only him - now more so because of visits. not really a question, but any ideas how to carry on?

willows May 2015
What a beautiful testimony, Garden Artist! Just beautiful! I feel that way as well. Every day that dawns is another day when I can make good the vows that I took on our wedding day, "For better or for worse, for richer or for poorer, in sickness and in health, until death do us part." I know that if I were the one with dementia, my husband would take care of me, too. It is a very difficult time. We just celebrated 64 years of married life. I never dreamed that this is the way we would spend our Golden Years, but if it means toileting him and washing him down and having him sit down to breakfast smelling like a rose, so be it. He eats everything and anything that isn't nailed down, so I think he still has a lot of mileage left in him (I hope)! :)

College May 2015
I don't feel like a wife anymore either. I feel like the Mommy for my Mother 94 and my husband 73. Not a lot of fun. it is a rough road to travel. I'm sure they will out live me. I am wore out and stressed out. They both seem to be very selfish and think it is all about them. I don't seem to count. Today is a bad day!

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GardenArtist May 2015
I think this is one of the most challenging, emotional and unsettling feelings that caregivers deal with. It's mentally painful to watch someone's decline, even though you're providing as much positive emotional and physical support as you can.

I think it's also a journey, one in which the pain and the emotional aspects are predominant, like menacing thunderclouds or tornados. Sometimes we can navigate it and get to a point that we're able to accept the limitations of age, illness and caregiving, to be more comfortable with what we've done under the limitations, and of knowing that we did in fact make life easier for our loved ones. But that journey is not an easy one.

I think the hardest part is turning the sadness and grief into something positive, to know that if we were not there the pain and suffering would be so much greater. Even if we spend a few hours with them and provide some temporary respite, that helps them.

Another difficult path but ultimately helpful is to imagine what our loved one's life would be like without us. Who would care for him/her? How would he/she deal with the loneliness, the fear, anxiety? Who could they call or rely on not only for physical assistance but just to talk to when fear arose?

Then remember that you're the one who responds to all those issues, holds his/her hands, provides the comfort, and that in itself is worth more than anything to someone attempting to navigate the ravages of illness and aging.

Sometimes I think of the process as changing the path of an ocean liner, of a large massive ship. I'm sure others battle the anticipated anxiety and fatigue of a new day, of wondering what might happen, and how/if we can cope. But if we can start each day thinking about what we'll do and how it will help, it's a beginning of a refocus on the positive and not the negative.

Obviously, this isn't easy and I certainly wouldn't claim that I've been able to reach this point. But I do think that the key is remembering every time we have contact with our loved one, what we're doing to help him or her, and mentally shift the focus from seeing the suffering to seeing the positive aspects of our involvement.

I wish you luck; this is a hard path for anyone to take.

Snowbank May 2015
The only vitamin supplement he takes is ensure. I've been considering going back to a multiple instead. I will try B6. Thanks for suggestion.

vstefans May 2015
Snow bank...with the Keppra, did they remember to put him on pyridoxine (vitaminB6)? It combats the terrible irritability some pele get on that. 25-50 mg twice a day for an adult,roportionatpey less for a child, is very safe....I never go to 200 a day or more because a few people will start getting sensory neuropathy with that.

Snowbank May 2015
Well, he is on a time- depression meds for 2 years. He's on gabapentin for nerve pain (800 mg) 3 times a day and yes it makes him difficult. So does levetiracetam for seizures. So does the 8 other meds he's on. Everything makes him irritable. I know I'm his wife. I was making a point I don't feel like his wife anymore. Refuses therapy. Says doesn't need it. You can't make them do what they don't want to do. So he sleeps a lot. Watches TV a lot. Everyone's situation is different. For those who's husbands are cooperative and has a good attitude and is grateful to there wife's for there continued care, then you are the fortunate ones. The rest of us our husbands take their misery out on us and yet we still do our best taking care of them.

College May 2015
He does have dementia and memory loss.

College May 2015
My husband had 2 brain injuries, 2000 and 2010. The first caused seizures in his face that were unbearable. He took gabapentin and it made him difficult. In 2013 he had a mini stroke that made his pain in his face go away and he got memory loss and cognitive loss out of it for about two weeks. No one could figure out what happened but no more gabapentin. Now we go to a neurologist and he takes Aricept and Namenda. I am thankful he is still with me. I am sad when he puts his underwear on backwards and etc. He can still sing at church some songs and play his bass guitar. But other things I have to learn so I can help him. He is a genius and still has a three wheel motor cycle in his hobby shop that will be hard to finish. He use to be in the shop all day. Now he loves to sleep and watch westerns and eat. He has gained 20 pounds in his stomach. He does not drive. He has fear in his eyes now and sometimes gets very angry. I try to tell him that I am on his side and we will get thru this. We claim the spirit of a sound mind and pray a lot. We take one day at a time. Hugs to all! I keep praying for a cure before it's to late.

vstefans May 2015
Snowbank, your hubby sounds like he has undiagnosed and untreated post-stroke depression...if that is possible, it might help to get that taken care of. If he is cognitively doing well enough it would even be worth trying marriage counseling. I often wish my parents had done that while they still could.

terryjack1 May 2015
It must be difficult, dementia, no matter the cause takes away our loved ones. Contact your local area agency on aging, ask about caregiver support groups. Look at what's available in your community, volunteer-it's a great way to keep busy. You can volunteer at a school, a hospital and assisted living or nursing homes. Attend your local senior center once or twice per week, you will need other seniors and they have activities you can enjoy.

willows May 2015
You are still his wife, Snowbank. Nothing will ever change that. "For better or for worse, for richer or for poorer, in sickness and in health, until death does you part;" you will always be his wife so long as he is on this earth.

Edahmen May 2015
Oops - doing pretty well

Edahmen May 2015
My husband, who is 73, is also a stroke survivor which resulted in vascular dementia. Fortunately, all things considered after all I have read on this site, he is doing pretty compared with what condition he could be in. When he felt bad because he didn't have anything for me for Mothers Day, I told him I am just glad he is still here and functioning pretty well. However I do grieve when I see him walking all hunched over or putting his pants on inside out. I grieve for all the things we used to do together - like shopping for plants for the garden, going out to lunch frequently and other things we used to do. But this is a new phase of life and happens to many many others. As others have stated, you need to find thankfulness in the things he still can do and in the things you can do together - even if it's just sharing a TV program before you have to make sure he gets to bed ok. Good luck and hang in there! It could be a LOT worse!

SamIamW May 2015
My deepest, heartfelt wishes to you. Grab the fleeting moments of joy and hold them close. Replay them when the other BS tries to pull you down. I admire you so much.

willows May 2015
Excellent advice, Salisbury. And one more thing. I often just turn things around when I feel down because of my hubby's dementia. I know that if I were the one needing the help, he would be helping me the best he can. People who think life should be just one never-ending picnic need to think and analyze. That is not what life is like at all.

Salisbury May 2015
Hmm, well, first, I can empathize. My husband is 81 and having both physical and mental issues. You are asking two questions: dealing with grief and carrying on. So...

Senior75, there is only one way that I know of to deal with the grief. Get ready, you might get mad at me. The path is gratitude. Find the place in your heart where you can feel genuine gratitude for your life with him, for all of his wonderfulness, for his love and companionship. Gratitude for the fact that you had him in your life and still do. Spend a portion of each morning thanking the powers that be for the thousands of things to be grateful for. Keep a gratitude list.

My experience has been that this gives energy, which can then be used to carry on. You will carry on with continued visits and a new activity or hobby--your choice. You know what is best for you.

Good luck and lots of hugs.

Snowbank May 2015
My husband had stroke 3 years ago following by pass surgery. His personality changed which brought out his dark side. Days you can't reason with him. If I get into it with him he argues like a child and wants a divorce. I cried most nights. You grief because he is no longer the man you married. I see the stroke took him from me. He can still be alone at home while I'm at work. He's 72, I'm 62. I've learned to detach from him. It doesn't mean I don't care. This attitude will protect you from the painful comments they make for your own health. It's hard to watch them get worse. He had a year of therapy to relearn how to talk, walk. But now he walks very little and is miserable. I refuse now to let this effect me. These are his choices as he reasons enough to still be alone. Stay busy, get involved with things you love to do. Meditate and get exercise. Walk in nature. You've done the best you can. You can't make them do what they don't want to do. In sickness and in health so I'm just a caretaker not a wife. I have 2 children and a grandchild. They are my support. My husbands family doesn't help at all. I can never put him in nursing home as have no insurance for that. I plan to have someone come into home when he can't take care of himself. Detach and stay positive for your own health.

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