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?
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.
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.
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.
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.
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.