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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.

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A lot of this is the confusion of caregiving, the inability to really concentrate on what we need because there is so little time to concentrate on anything. A confused personality in the home creates confusion for all.
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.
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againx100 Mar 2022
Wow, your first paragraph is PROFOUND. It is my life!
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I think in such a situation you're going through the stages of grief; denial, anger, bargaining, depression & acceptance. You may fluctuate between anger & depression/bargaining as you work your way towards acceptance of the fact that DH has Alzheimer's, that your life has changed as a result, and you're now in charge of BOTH of your lives. You're scared & confused, and rightly so, and angry too, as I can understand myself. My DH has had a host of health issues since 2019 and now he needs a liver transplant. So my life is on hold while I have to devote it to him. It's not without it's irritations and sacrifices, heartaches and worries galore. What do I need from friends and family? Who KNOWS? I think I look at my family & friends sometimes & feel a twinge of envy. Like, "how come YOU get to live a normal life while DH & I get to go thru a living nightmare with all these health issues, it's not fair!"

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.
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I was in the same boat for awhile when my folks first moved in.. felt I had to do it all. Then I realized that 2 of my best friends who had been down this road really WANTED to help, and I slowly was able to let them. Stay with parents when I had a Dr apt, go out to lunch with us and help with the folks. I was angry and frustrated alot, but I learned to open up Hope things improve for you
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A suggestion: When family comes to visit, let them visit your husband and you go do something else out of the house, out of the way of becoming annoyed, but let the visitors know what they can do while you are gone, such as make, order, or bring lunch and clean up the kitchen after, mop up the kitchen floor, start the laundry or whatever needs done. Let them know that a schedule for their "visiting help" would be most welcome, such as every Saturday at noon, so you know when you can plan to leave the house to do errands. Perhaps right now your husband can be left alone, but there will come a time when he will need 24/7 care, so get started at this sort of scheduling help now, eventually hiring the help. I suspect your annoyance is coming from family ignorance about what you are experiencing, so just tell them. And when they start actually helping they will understand better. You can still be in charge, but handing over some chores with specific instructions will help everyone, including you.
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My husband has younger onset ALZ and is in middle stages. One of the best suggestions I received was creating a daily white board that my husband can see. I list day/date and activities and tasks with checkboxes that he will be involved with or that I have to do. I also keep a calendar for planning what I have to do for each day, i.e. doctor's appointments, people to contact or bill due dates. This helps me focus on what needs to be done and allows me to plan for some personal time (which is needed as well). When people ask how they can help I will have an answer. It may be taking my husband out for a drive or watching a movie with him. I can then back out of the visit and do what I need to do, either house stuff or personal. I have also learned that I don't tell my husband until I know that person is going to show up. People have things that come up and then they cancel which can create other issues.
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.
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Please don’t continue to do everything, it will become exhausting and simply too much. Let others know specifically how they can help. Get your husband used to staying with people other than you, early and often. Your husband doesn’t need a burned out, resentful caregiver, you’re not close to that at all now but it can easily happen. Let go feeling you have to control it all. I wish you peace
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Sit down and take a deep breath. Now I'm going to drop some breaking news on you.

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.
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Please don’t push family away. None of you are really sure what needs to be done at this point. This is a whole new ball game for everybody.

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!
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Ariadnee Mar 2022
Is it possible for you to use Zoom? My computer has a built in camera, then I plug in an old set of head phones. Husband can't hear what is being discussed. Also, in the lower part of a Zoom meeting, you can type in a response or ask a question, and your spouse won't be the wiser to what is being done. Check out Alzheimer's web site there is a lot of support there. I'm in a rural area too, nothing here for caregivers, have had to dig hard to find anything for myself.
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You are overwhelmed. I was in the exact same position and did the same things. First of all if your husband is a veteran he is entitled to veterans benefits. I was able to get a home health aide for 20 hours a week paid for by the VA so that I could at least get out to run errands and an occasional cup of coffee with a friend. That was helpful in a big way. Secondly you need to find a social worker or a therapist that you can vent to which will also be helpful. Next make your needs known and when people offer to help you let them. Even if it’s to come and sit with your loved one for an hour so that you can go lay down and take a nap or make a private phone calls. As my husband‘s illness progressed and the falls became more frequent and he kept trying to leave, jump out of a moving car, become anxious and loud and boisterous, I realized I didn’t have a choice but to place him. Unfortunately my husband has deteriorated in a huge way very quickly and he is now living in the veterans medical facility and getting wonderful care and I am extremely lonesome and sad and I miss him terribly, but I realize now that he’s safe and he’s well cared for and I can go visit him as often as I want without guilt. This is not an easy road we travel, and you need to first of all get everything in order by going to an elder attorney and doing all the things you need to do to get him qualified for Medicaid, which I did and it’s still pending,And take care of yourself. If you get sick there will be no one there to advocate for him. Just remember that even if he’s a veteran long-term care is not paid for, Medicaid will pick up a portion of it but you still have a portion to pay. This is what I’m waiting for now to find out what my portion will be. Good luck to you I’ll keep you in my thoughts and prayers, it’s not easy.💜
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Please don't turn family and friends away. What you are going through is normal. You are going through grief and burnout. Despite what you might think, you can't do it all. Best thing to do is get help where you can even if DH or you are not comfortable with it. His decline will only get worse and more will be expected from you. Ask friends and family to give you a break and during part of that time, start looking for care facilities to choose from. If you think only you can be a caregiver till the end, you are sadly mistaken. If you let yourself burn out, you risk your own health. Good luck to you. ((HUGS))
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