I am caring for my husband with early Alz and have uncontrolled annoyance at my friends and family. Why?

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.

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.

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

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

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.

You have uncontrolled annoyance at others because you have unrealistic expectations of them.

Don't cut everyone off just because they aren't helping you the way you want. People do what they know how to do, and I wouldn't be surprised if these friends of yours have no idea what you're dealing with because they haven't been there themselves.

Find a support group of people who are in similar situations -- THOSE are the people who'll be there for you and you for them. Only people who have been there understand inherently what you're going through and what you need.

Just as you wouldn't expect your friends and family to know how to set a broken leg if they aren't doctors, don't expect them to know how to do the right thing for you in this situation. Just don't blame them for not knowing.

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.

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!

And please do not push friends away, either. You are going to need emotional support during this time. Be forgiving. Not everyone can rise to every challenge for a friend. It's clear that you need help, and you also need guidance. You may be able to do this on your own at this time, while he is still able to do things for himself. But have a Plan B in case his health declines. Would you be able to lift him out of bed into a wheel chair, if he becomes unable to walk? Would you know what to do if he gets agitated or even violent (which can happen with dementia)? Get connected with a local social worker and senior caregiving networks to learn about your and your husband's options. Depending on your finances and what state you live in, there may be resources available to help you. it comes down to two basic choices, if your loved one needs more care: have aides come in to help (or family/friends, if they are able to do this), or a move to assisted living/memory care where professionals will handle the day-to-day care. You also need to plan for some you-time to get breaks for yourself. Caregiver burnout is a real thing.

My state has a Seniors with Disabilities agency that was helpful to me while I cared for my dad who had dementia. My dad qualified for a certain amount of paid respite care for me, counseling with a counselor of my choice for me, and a certain budget toward things we needed (I put the money toward a camera I could put in his room so I could keep an eye on him while I was outside etc.) Look into resources like that in your area. They also had educational materials and meetings to help caregivers. Sounds like you could use some general support from people who understand caregiving.

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.💜

Lealonnia has a great point about the emotions and phases you are going through and says it all, everyone else’s advice is great too. What I would add is;

Allow yourself to go through all of these emotions, they are normal and important, processing through them when they come up is so much better for you and those around you than holding them in. Anger is often frustration, frustration with your day, with the inability to make things “normal” and remember some of us are better at making things “look normal” than others and you never really know what another persons real normal is.

The friends and family you are frustrated with are likely also feeling frustrated and inadequate because they want to help but don’t know how. They are all suffering a loss in varying degrees due to your husbands illness too. We just aren’t trained well at how to handle challenges like this from either side of the equation. People just react or have been trained differently, some will leave you alone because they think that’s what you want or they don’t want to intrude, add to your plate. Others will bombard you and you end up with all kinds of food you end up throwing out because you don’t want to be ungracious.

Think about who beside this forum, you are most inclined to vent to. Who can you simply call and tell about your especially hard day, your emotions or fears about this next phase and count on to just listen not always try to make things better maybe even help by sharing their troubles too. Nothing more helpful for me than being able to help someone else, it brings me back to earth and reminds me I’m not useless and I’m not the only one going through things. My brother and I do that for each other on the subject of our mom. Then think about who probably wants to spend time with your husband, who does he enjoy spending time with and who do you trust to take care of him for a few hours or a day, even a weekend. Who is great at taking care of details, research, organization? Who might you be ok with doing some light housework or helping you tackle that project you’ve really wanted to get done? Who cooks things you and your husband like and enjoys sharing? Who did you enjoy meeting for lunch or coffee, shopping with or knitting with before your husbands diagnosis? Write down a list if it’s helpful but now you should have an idea of who you can try to call on for what. Not everyone is going to be available all the time but hopefully you have multiple people for things and you may find that knowing they can do something you actually need is as benefit all to them as it is you! Don’t try everything at once, ease yourself into this because you will find yourself overwhelmed by keeping track of who’s doing what when. I really think finding and getting into a grove with “your person” is most important. Then find one or two people to come visit with your husband and let them visit while you do things elsewhere in the house, this could be combined with having a friend help you with a project in or around the house but let the person there to visit with DH (dear husband) be the one to find you if they need something don’t keep checking in unless you feel that’s necessary for DH comfort at first. The idea here is everyone being comfortable enough for you to run out and do an errand or go out to lunch with friends eventually.

This is overwhelming, especially at first but most of the time it’s a marathon not a sprint and marathons take a lot of training, learning. I think your up for it!

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))

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.

BarnabusB: Alzheimer's is a horrible disease. However, there are Alzheimer's support groups. Please see the following link. https://www.alz.org/help-support/community/support-groups.
Also, you won't be able to do it all; if family offers again to be there for you, perhaps you could verbalize a certain way that they could help you in lieu of just visiting.

Guess you are angry that others can not figure out how to help. You might be a little angry that you have to deal with this situation on your own. The truth is that you don't have to be "stuck" with what is.

Maybe start considering how all those concerned people can help. Make a list. Give it to them - family, friends, members of your faith community, and even paid help. Allow them "to sign up" for a task or a time slot so you care not alone in doing all that needs to be done.

I didn't want anyone taking care of my husband but me (not alz). It was exhausting on all levels imaginable.

All kinds of things happen with family and friends in situations like that, and like yours. I'm sorry about your husband and the stress it is placing on you.

Structure is important to a home with a patient. I don't know how long you've been caregiving...has it been long enough where there is a routine and have an idea how to handle unexpected situations?

It's easier to know what to ask someone to do, or not do, if you know what you need, and needs to be done. If you're still trying to figure things out, you can get someone in there to help prioritize/organize his needs and care along with what resources may be available to you. (Again not knowing your situation, the "someone" might be a social worker, an HHA, a member of his care unit (especially this!), even some churches have volunteers who are experienced in home care and/or specific diseases, etc.)

I have an old friend who is a much-celebrated and seasoned resource specialist and counselor for patients (and their families) with Alz, TBD, dementia. If you like, I can give you her website. Maybe there's a nugget or two that would help better define your needs (b/c you don't know what you want), sort things out, discover resources, etc.

I do hope you are finding ways to take care of yourself....

Oops--your only question was WHY you feel the way you do...and I didn't reply to THAT. Sorry.

You feel this way for any number of reasons! Your husband has a disruptive disease. It's disrupted him, you, your life, and wound itself into every nook and cranny of your existences.

You're angry. You're scared. You're worried about the next moment, the future. Your concerned about being a good caregiver to the man you share your life with.

You miss what used to be, how things were. Everything has changed. You wonder how much more they will change, and how you'll manage.

I understand the visiting relative thing. They do mean well but their presence is often a hinderance--they take up space to visit when your world has turned dark. They don't understand how to console or comfort, and you need so much that they couldn't possibly do anything that will reeeeaaallly make a difference in a day, much less over time.

Those are some reasons why. Below are a host of ways to consider working through it to get the other side (well, to the other side of your new normal).

I get it because I am in the same place with my husband. I just don’t know what kind of help I need. Perhaps daycare? My friends and family all seem to have their issues and problems and besides I don’t know what they can do for me. NOBODY really gets it unless they have been through all the crazy-making in the early stages. Each exasperating event can seem small to people who don’t get it. You need relief so day care a few hours for a few days might work.

Yeah…let them visit, but when they arrive, YOU LEAVE to go out anywhere..a walk in park. on beach 🏖, a movie 🎥 🍿, shopping, a spa, etc. The visiting “friend” can then see for themselves, a snapshot what you have on your plate. Take at least a couple of hours for yourself. Hugs 🤗

No on really gets it unless they have lived it, so don't be too hard on outside friends and family.
*You might want to google a support group in your area so that you have an outlet for the stress and a way to connect with others who are in the same boat.
*Everyone needs a break every now and then so you might want to consider hiring someone to come in for several hours a couple of times a week so you can run errands or go for a hair cut or sit in a park and cry...whatever you want to do. *Not sure what your husbands mobility is but there are adult daycares that he could go to....even if it's once a week, that would give you a break.

Youre annoyed probably because you feel you have no energy to care about their problems or their happiness day to day. As the profane but accurate saying goes, you have no effs to give. Maybe not later and maybe not overall, but as far as today, you just have no effs.

Over time though, these friends and family will interpret not being in touch as believing you’re done with them and move on. For that reason I’d try to maintain contact, even if only with a quick text.

Do know that depression manifests as anger, sudden anger often enough, in many instances. People always thing of depression as sadness and hopelessness and it can be, but it can also manifest as rage. Throw-the-cat-across-the-room type uncontrolled rage and furry more than annoyance.
Let them know when they visit they must come with a casserole. REALLY. I am serious here. Sometimes honesty is the only way to do this. Say "I know you are trying to help, but unannounced visits don't do it for me unless you come with a casserole or a big bag of groceries. I know you mean to give me support, but that's the best way to do it. That or tell me you will stay here for four hours and I should go out to the library, read the papers, get chinese takeout on my way home. Bring me a bottle of red or white."
Your determination is going to lead to anxiety. There's no way to do this "right". There's no "fix" for this. There is only survival and carrying it the best you can. Try to be easier. Caregiver types are like this. Their whole vision of themselves depends on being capable. Why? For what?
My heart goes out to you.
Start by being more honest. You must. Your heart and soul deserve it. Your survival may depend upon it. You can tell it gently, but please DO TELL YOUR TRUTH.

I also care for my husband with early progressive dementia and I work full time.  I work from home most days and sometimes I literally feel that I am on an island alone.  I have daughters with families only an hour away, yet when they decide to visit us, my anxiety level goes through the roof.  I worry, lose sleep, because I have no idea how the visit will go.  My husband does not have any memory at all.  Maybe for 2 minutes, then all short term memory is gone. It is all I can do to keep my head above water.  I have realized, I have to place him first.  This makes me feel (not angry) but guilty that I put off my family due to the uncertainty of the visit and how my husband will be that day.  We just cant carry all the monkeys on our back.  Give yourself some grace.  We do the best we can 24 hours a day.  Wake up and hope with God's grace we can do it again. HUGS.

I think I can relate, hard to tolerate friends, family, and their endless advice, which has no merit, I told few of them not to do it.
I am caring for my husband with PD progression accelerating weekly it seems, there is some 40 symptoms associated with PD and he has lots, often thinking what next?
Well, I went pretty much thru anticipated grieving and I am coming to acceptance. I am hoping for the best, but anything can happen, so I had to ask myself:
Am I good care giver? Yes!
Am I neglecting myself? Yes!
One advice I took from professional was to distance myself from everything. Seems strange at first, but it is not. No, I need self care, hobbies, friends, learn something new and now I sometimes take a day or two doing nothing or as little as possible, meaning I spend a day reading or going out, and I let go of everything and no matter what happens, I promise myself, I would lead best possible life.

Lots of great support and suggestions.
I'd add - consider adult day care/adult day health programs - some are dementia specific and really create a safe and stimulating setting and program of activities for an Alzheimer's patient. Staff there include a nurse and social worker, who can help you find local support resources, provide feedback on how they see your loved one, and you get a solid block of time for yourself.
Even if he is reluctant to go, the staff can help you with strategies that can get through that part...and friends might help here, too. It's not day care - it's a seniors club with a mens group, it's a clubhouse, etc.
I'd also add - the risk of a caregiver become seriously ill or having some sort of accident (fall off the curb and break bones in your foot) or have a sudden change in their own health (stroke, heart attack, etc) is real. If that happens, who will care for him then? Taking good care of yourself first matters for this reason, too.