I am doing everything ...okay. I have literally cut off a few friends that I feel (right or wrong) are not there for me. I get annoyed at family that want to be there for me... but think that visiting me is the way to do it. Yet... I don't know what I need. I am so determined to be a good caregiver that I can't let go.
Sit down with a list. Title it "What do I need". Do you need help with grocery shopping? Do you need a few hours off to DO the shopping? When you understand what you need then reach out to friends with perhaps a letter you send to all. Explaining how new this is to you, how confused you are by it all, how right now you just don't know what you need. Tell them why you can't just now be receptive to visits in which you have to "entertain" or even have to THINK about others.
Writing often helps us form our own thought. In fact Joan Didion said "I write to find out what I think".
I wish you the best.
You're in this for the long haul, however, so being determined to control every iota of everything in both of your lives is unrealistic. What can you let go of? What can you delegate to someone else that will take a burden away from YOU? If friends and family really want to help you, let them! Come up with a list of things they can do for you, and then let them DO IT. If you don't want visits, let people know that visits aren't what you need right now, that what you really need is X Y & Z.
You're not capable of being the perfect caregiver, so let go of the notion. And remember this: Alz is a family disease. It's not just DHs problem, it's yours too. And by God, YOU need time for YOURSELF otherwise you will break down, and then what? You need to recognize the fact that you're important here too, and that your life is hugely affected by DHs disease. What can you do for YOU today and every day? Stress is a killer, and what DH will put you through with AD is a LOT to deal with. The road is hard and strewn with difficulties. So you need a plan to decompress yourself from ALL of it. Your friends can play a part in helping you with that; sit with DH while you go get your hair done. Your family can sit with him while you have lunch with your g/f's. Go shopping, get a mani/pedi. Who cares if the caregiving isn't done perfectly while you're gone? You got OUT of the house & THAT is what's important. Find a support group and join it. Go to ALZ.org and read. They have an 800 number to call to speak with a live person for help & support. They also have a chat/blog group over there you can sign up for. Take all the help & support you can get.
Wishing you the best of luck with all you have on your plate.
And the house stuff...my husband started projects and then didn't know how to finish so I am learning a lot about doing things around the house or who to contact. I found a handyman that does general work and that has been great for the tasks I do not want to tackle (or shouldn't!).
I wish you all the best on this journey.
You're not perfect and neither is anyone else. It's okay to need help with caregiving. Especially when it involves Alzheimer's/dementia.
You have a great attitude about caregiving and determination to be good at it. That doesn't mean you have to do it alone. Take it from me. I've been a homecare caregiver for almost 25 years. I've seen it all. Family caregivers who couldn't let go of any control and refused any help. They were insistent on doing it all themselves.
What ends up happening to these caregivers is caregiver burnout. A few of them also had nervous breakdowns and became total basket cases. So by the time I came into the home, I would be caring for the elderly person and their caregiver.
Normally, I would never suggest contacting a caregiver agency. I'm always in favor of private hired help. In your case I would recommend you call a homecare agency. They will send a nurse and a social worker out to assess your living situation and help you to understand what your husband's care needs are and what your needs are as a caregiver.
Please speak with some homecare agencies in your area. Ask your husband's doctor to recommend homecare and to give you a referral. Insurance will pay for some hours. Those hours will be your time. That's for you to get away from it. Please don't try to go it alone. You don't have to. Stop pushing family away who want to help. They aren't going to know what you want or need unless you tell them. No one is a mind reader. Let your family help.
And if you need to vent, everyone here (with the exception of the occasional troll showing up from time to time) is on your side to support you. Good luck.
Id give anything to have family to help. We have none. It’s just me and my husband with Alzheimer’s. He is in early stages still. At least I think it’s still early…not sure. I’ve tried to get on a phone support group, but whenever there a meeting, my husband is always nearby. I’m not comfortable talking about this when he is right there. I can’t go to a meeting because A. I live in a rural area and there’s not meetings close by and B. My husband would be alone and I’m not comfortable with that either. We are basically joined at the hip. He does golf…I do not. His golf friend picks him up, sadly, there hasn’t been any phone support meetings at those times. Sometimes when he’s at golf, I literally just sit. I am tired, scared and I just enjoy the quiet and the time “not” to be responsible. I literally just sit. Eventually I’ll have to hire some help,
So if you have family around that’s willing to help even though they (and you) are unsure how, that’s priceless.
Start with the best “candidate” in your family to help. Who do you communicate best with. Who are you closest to? Who is nearest? Who has the most time? Explain what your husband needs help with for a given afternoon. With food prep? With meds? With doing puzzles or game playing? Or just visiting? Then you take that afternoon and get something done for yourself, preferably, but anything…grocery store, paperwork, banking, other errand running. Hopefully you could get a haircut or pamper yourself just a bit. Heck just go out and eat lunch. Go for a walk. Call a girlfriend. Whatever. If you have family help available, take it! And be grateful. Act grateful to them. Work together during this time. Alzheimer’s is so hard. Take help wherever you get it and be grateful. Good luck!
See All Answers