Burned out and completely useless as a caregiver. Any advice?
I have been taking care of so many sick family members for so long that I just don't have any more energy for my sweet husband with dementia. I am exhibiting every single trait of caregiver burnout. Add one: desperate. My health is going downhill rapidly. No other family members to help. Trying to get paid outside help to come in with limited resources. Not very successful so far. I can't leave him alone too often and have had to give up most of my fun times with friends. He has become very antisocial and does not want to go anywhere. I am really worried about myself. I need to stay strong for him and the 6 dogs we rescued when he was well and we lived on a farm, but I just don't want to get out of bed. Antidepressants aren't helping the hopelessness I feel. In this new city we live in, very difficult to find a good counsellor. The ones here aren't taking new patients or don't take my insurance. The support group in town is a trip to a nice restaurant to have lunch. They do not talk about issues they are facing. I don't need lunch. I need to talk with others and get suggestions. Feels like all the doors I try close on me. Anyone feel as down as this? How did you cope?
your caring for the equivalent of 7 people , what do you think will happen ?
I'm not as down as you are but I feel for you. I just want to give you a hug and tell you that you aren't alone and that there are others including myself and my mom who are dealing with loved ones who have dementia who are caring for them. It's not easy. In fact it makes me never want to get old but I feel good knowing that we are at least giving her the best life we can while we can still do it. We know there might come a time (although I would rather she just peacefully slip away one night while she is still in pretty good shape) that she will be more than the two of us can handle but for now, we are coping.
This place has helped tons. People are caring here and supportive and if I had friends like what people are here, I'd never let them go. Listen to their ideas, find support in what they say and above all, never give up hope. You are doing a wonderful thing caring for your husband. Find a memory everyday to focus on. I know my grandma has her funny moments where I just laugh and laugh even if it's when she isn't paying attention because of the things that come out of her mouth. Find something like that to focus on each day. Try to keep a journal to get some of that angry and upsetness out. My mom and I keep a journal about grandma and how she is doing. It can be depressing at times to know how many changes has occurred in the last year but it helps me to get it out and not focus on it so much. It reminds me of how much she really needs us.
I hope you feel better soon and keep coming back. You'd be surprised knowing what a little venting and feeling like you are helping others can do. Even if you can't help yourself, if you help someone else, it can be the outlet you need to feel better.
It sounds like you are looking for the support you need -- you are not sitting around just moaning "poor me" (although that would be justified). I am so sorry the support group you found isn't what you need. Maybe there is another one you could try. That would take some effort to find, and you don't need another thing for your to-do list, but the support group I belong to, all caregivers of loved ones who had the same kind of dementia as my husband, was one of the things that kept me going. Keep looking!
Dementia is going to do what it is going to do. What you can do as a caregiver can make a huge difference in quality of life, but you can't change the course of the disease. So I think most of your efforts right now deserve to be on your own behalf. As the airlines say, put your own air mask on first. This isn't selfish. It is necessary.
Sounds like you might need an adjustment to your antidepressants. Also some talk therapy, especially since you aren't in a good talk support group. Depression can be very debilitating and it can usually be at least greatly improved by appropriate treatment. I know what you mean about it being hard to find a counselor who knows anything about caregiving and also takes your insurance and also has openings! This can be a real challenge. The doctors who are treating your loved ones may be able to refer you to someone other patients have mentioned as helpful.
Having outside help come in is awesome. And it can be hard to arrange and pay for. Have you consulted with your state's Aging program? Have you had a Human Services social worker come in an do a needs assessment for your mother? Your husband? Would either of them qualify for Medicaid?
As I'm sure you know, isolation isn't good for depression and isn't good for caregivers ... and is almost inevitable when you have full-time responsibility for someone with dementia. When you can get outside help, use at least some of that time for activities for yourself. Meet with friends. Join a book club. Be where other adults hang out. One thing I did occasionally was have phone dates with friends. We agreed to have our lunch or a snack at the phone and set aside a half an hour to just chat. Sometimes we got interrupted -- she by work issues or me by my husband -- but at least sometimes we had a nice chat and at least stayed in touch.
Respite -- a whole week off from all caregiving -- might be very useful at this point, but can be hard to arrange and hard to pay for, especially since you are caring for more than one person. This is something you need help finding. The Area Agency on Aging or Senior Linkage Line or whatever unit is available in your state may be able to help you with this.
Are you a reader? A book I found helpful (emotionally) is Loving Someone Who Has Dementia by Pauline Boss.
One of the things Dr. Boss mentions is that online support groups can be very useful. So come here often. Get involved in the topics most important to you. Ask questions and answer some, too. I hope you find a good local support group, but I'll bet this cyber group can be helpful too.
If nothing else, it helps to know you are not alone.
also go to Money and Legal tab and click on Paying for Care. Hope this helps.
Go to the lunches anyway and just for that one hour, try to put all the worries aside and breathe. Sometimes the therapeutic value of these meetings is simply being able to un-obsess and get away.