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.
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.
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.
HUGS 🤗 back at you 💕
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.
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.
*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.
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).
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....
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.
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.
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!
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!
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.
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.
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.
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.