Follow
Share

I care for my husband who has dementia. He's not very bad yet but has very little long term memory and virtually no short term. My grief is for the man he was. I recently discovered that he has no memory of our wedding 38 years ago, and only patchy ones of the following years. It breaks my heart to realise that I am alone with our past, can't discuss it with him, no cosy nights recalling the fun of our youth. I also grieve for our lost future. No retirement holidays as we had hoped, no meals out, no social life. His two daughters have no contact with him or me, and despite kind words and sympathy, my sons are not hugely supportive. I have good friends but am loath to come over as a whiner or bore them to distance themselves. Everyone says how strong I am but actually I'm crying with loneliness and grief inside. I don't need help with him, but I'd give a lot for a day out or a social evening with someone who understands and shares memories. This grief is becoming unbearable and I'm not eating much as it makes me nauseous to think of food.
Am I being selfish or does anyone else feel this way?

This question has been closed for answers. Ask a New Question.
Nana58 i too wish we could talk. This filthy disease not only steals the life of the sufferer but that of loved ones too. I become so sad when reminiscing to myself over happy times past, made so by the knowledge that he does not remember. These memories were made to be shared. I am fortunate that i have wonderful friends from those times but one is so afraid of appearing needy or maudlin that you put on a brave face and carry on.
Helpful Answer (0)
Report

No, but just tell him that you love him so much!
Helpful Answer (0)
Report

Your situation is almost identical to my situation with my husband. I wish we could talk more. My husband just turned 59 with Early Onset Alzheimer's. I an 58. Our dreams of travel at retirement are shattered. We take walks in park but his walking now I getting unstable. Thinking to much about how things use to be is not health but when I think of the future without him I get nauseous. I attended a GRIEFSHARE support group at one time and it was help. Everyone in the group had a love one that had already past away but they excepted me because I was experience ANTICIPATORY GRIEF. (Early Grief) . You can go online and find a group near you. Its free of charge for about 6 to 8 week.
Helpful Answer (0)
Report

I am humbled by the experiences os you all. Whilst I battle with my own demons, i see i am most certainly not alone. Threeboys, i wonder, does your father become impatient with her? I find it veryhard indeed when having to repeat myself over and over, not to get scratchy. I am ashamed to say i dont always succeed.
Shimigami, your situation sounds horrendous. Im afraid id be unable to tolerste the aunt on top of everything that you have to live with. And 40 is no age to be in this place. Do you live in uk?
I cant thank you all enough for taking time out of your stressful lives to comfort a stranger. I have taken on board all your suggestions, and will be visiting the dr as well. Thank you from the bottom of my heart.
Helpful Answer (1)
Report

Oh, you are not selfish at all! You are feeling profound grief at watching someone you love go through the most devastating disease I know. My mother is in end stage early-onset Alzheimers. She is only 69 and has had dementia for about 15 years. She is completely bedridden and nonverbal and no longer recognizes anybody in the family. My father (her husband) says exactly the same things you have said. The grief of a lost future is so painful. And once they get to the end stage, they can linger for years, and you can't be a human being and not feel grief at watching another human being "live" with advanced Alzheimers. I've decided if I ever write a book about my experiences, I will title it "going to all my mother's funerals," because every week feels like you are mourning that person all over again. If feels like you go from one episode of mourning their loss to another episode, because they are not truly living anymore but not yet passed on either. Find a good support group in your area and go talk and talk and talk and cry your heart out. Having people who intimately know what this feels like will be a godsend for you. You are doing an incredibly hard thing. Stay strong, and know that we all here now how you feel.
Helpful Answer (2)
Report

Tigger, I definitely know how you feel in grief and lonliness. My mom has dementia and is in a skilled nursing facility. I have done good research on vitamins that could help turn it around but right now that is up in the air. She is not that bad either but has zero short term memory. I lost my only sibling, best friend and ally so this is a million times worse. I live in a family building with just my old aunt and she is very annoying, expecting to go everywhere with me now that I just bought a car. I'm finding that it's worse to have company you don't want than no company at all. I have no one to have a social life with. No kids or husband.

Everyday I go to visit my mom and back home with my aunt in tow. I'm 40 and feel like I am no old enough to give up my social life. If I want to do anything my old aunt is right there jumping in the front seat, so I feel very trapped. I know she would not be doing this if my sister were here. I think the loneliness and lack of socialization is so hard and I can't even talk to my mom the way I used to as she doesn't always understand my complaints. So I have no one to vent to. My friends have abadonded me or all have their own lives. I wish those of us here could all have lunch together.
Helpful Answer (1)
Report

Tigger123, how very well you have articulated the worst aspect of having a spouse with dementia! Of course you are crying with loneliness and grief inside. Caregiving is lonely, and losing a loved one causes grief. Your reactions are normal, if painful. The fact that your soulmate is leaving you little by little makes this different from the more usual ways of becoming a widow. And few of us have role models for this time of grieving while our spouses are still alive.

My husband's journey with dementia (Lewy Body) lasted about ten years. I found going to support group meetings specifically for caregivers of people with his kind of dementia very helpful. I read many many books to understand what was going on, and by far the most helpful for my emotional issues was "Loving Someone Who Has Dementia" by therapist Pauline Boss. She writes about this ambiguous loss, where the person you love is slowly being replaced by a person you hardly know. Just reading her descriptions of it is very affirming, and she also has some practical advice on how to cope.

When your spouse has dementia you suddenly need to do all you were doing in the running of the household, plus all your spouse used to do, plus take on the whole set of new tasks related to caring for him. It is exhausting. Your sleep may be disturbed. Eventually you cannot leave him alone in the house and even "simple" tasks like grocery shopping take on a whole new level of complexity. There are endless medical appointments. You may have to deal with incontinence. All of this is painful. But the worst, as least for me, is the loneliness and grief that goes on and on.

The journey with my husband's dementia was painful. It was also profoundly meaningful. Trying to ensure that his life had as much quality as possible added quality to mine. May this be the case for you, too, Tigger.
Helpful Answer (2)
Report

You have the right to have bad days. My goodness, the stress and strain. It's certainly understandable.

I think I might continue to explore the meds though. My mom had to go through quite a few that she couldn't tolerate before she found one that worked for her. Finally, her doctor gave her some in liquid form, so she could start with a little bit and gradually increase the dosage. That was the key for her.

Do you have anyone who can stay with your husband while you go out and have some "me" time? Is there a gym you might go and just spend a couple of hours? I used to like to go and work out, get a shower, and then just hang around and get a cup of coffee or smoothie and chat. My gym had a lounge, tv, cafe, etc. I would suggest yoga, but, I never cared for it, so......some find it helpful.

Grief is something that I suppose if inevitable. It's just that with dementia, it comes before the person dies.

My cousin also has Mixed dementia (Vascular and Alzheimers). Her progress has been pretty fast. She's gone from running her own household to being severe almost final stage in 2 years .(Double Incontinent, wheelchair bound, no short term memory, almost no long term either.) I love her, but, I know that she's barely there. The cousin that I loved hasn't been around in a long time. I do recall the good times and try to relive them, though I know she doesn't. She still knows who I am, but that's about it.
Helpful Answer (1)
Report

Thank you sunnygirl1. Your words of support mean a lot. Im afraid I'm my own worst enemy in many ways. My husband has alzheimer's and vascular dementia. He is also in remission from cancer. He does recall some things himself and photos help. He is physically well and actually is very good at appearing better than he is. Dr says when he does get worse it will be dramatic. I have lived a very active and adventurous life and am grateful for that. It makes this time more frustrating though. Ive tried support groups, not really my thing. Dr has put me on antidepressants, but one brought me out in hives and the other made me sweat excessively! Im taking hemp seed oil which seems to help. Ive got three dogs whom i am devoted to, and i am thankfully still able to get out with. Thats when i meet my girlfriends. So you see, when looked at from the practical angle im really quite well off. I can go days, weeks even, but when the grief comes it is overwhelming. I so appreciate your kind and thoughtful words. Thank you
Helpful Answer (1)
Report

Oh Tigger123, your pain is palpable. I do not know what you are going through, but, I bet there are some members here who do. I hope they will see your post and respond. Your journey must be one of the most challenging things a person will have to endure in life. Do you know if there is a support group nearby? That kind of thing may provide a place to vent, share, get support. Of course, this website is also a great place to come.

Is your husband able to look at photos of your wedding, family events, etc and recall anything?

What type of dementia does he have?

Are you caring for him alone in the home?

Do you think getting some help would ease your workload and allow you to get out of the house more? Sometimes, 24/7 caregiving takes a toll on you.

I might also talk to my doctor about it. Rule out if you might have some actual depression. See if the doctor thinks meds might help. My mom recently went on meds for depression and they have really helped her. It's just a small does, but already, it's helping her mood and she's gotten back a lot of her energy.

Of course, your situation is so stressful and draining. I hope you can find more support in your community. You ARE NOT selfish. Not even a little bit. Please take care of yourself.
Helpful Answer (1)
Report

This question has been closed for answers. Ask a New Question.