Hi, been here before. My husband has Alzheimer's. Thought I resolved one of the problems by blocking the friend who overstepped boundaries when he told my DH about a death without my knowledge and because he had left him at a stranger’s house when he brought him home from a baseball game a year ago. Talked to my DH cousin today, he and his wife are vacationing in Aruba. He is also good friends with the one that I blocked. He asked me to reconsider my decision about blocking his friend’s calls from my husband. I won't go into every detail, but those people don't have a clue what I am going thru as a sole caregiver to my husband and honestly, he's vacationing in Aruba this when I can't even get to one of my doctors’ appointments because all of my time is being taken up by my husband’s care. I was sick all night because of this, crying and sick in the bathroom. They don't have a clue about the stress of it all. I am so sick of all of them. Would like your input. Thank you.
Is this working for you? You sound very much on edge. (((Hugs)))
Yet, when I talk to family and friends on the phone, they tell me how GREAT I sound and how THRILLED they are I'm doing so well! Yay! What part of I'm chairbound or bedbound do you not understand? What part of I haven't been to a grocery store or a restaurant for 8 months bc I'm too dizzy to function do you not comprehend? That taking a shower with the WALKER in there saps all the strength out of me?
I often say to my dh that next time someone calls, I should drool and speak like I've had a major stroke (God forbid) bc maybe THEN others would understand the magnitude of disability I deal with on a daily basis, not being able to cook or clean or function, for petesake. But hey, I SOUND GREAT!
What I wind up doing most of the time is letting the calls go to voicemail. I'm sick and tired of explaining myself. I'm sick and tired of hearing how GREAT and strong I sound. I'm sick and tired of empty promises about how these folk will come visit me soon but haven't managed to in 8 months. Yet want to know "what I can do for you?" Nothing. Just like you've BEEN doing.
Hire help Cheeky. Stop trying to manage this beastly job alone. Stop answering the phone. Stop crying and vomiting all night while others are partying it up in Aruba. People only want to hear or think Everything Is Fine. The truth interferes with THEIR peace of mind. Look out for yourself, before you are hospitalized and dh goes into managed care ANYWAY.
So sad how people and family just don't
get it, I wish only the best for you and
that it will get better. Thank you for
your support when you are going thru
bad times yourself.
No, they don't have a clue because they have never experienced it. TV shows people having Dementia as people who sit in a chair and look at the wall. Not the man who picks up a desk top computer and throws it. (My GFs father) An 85 year old man who suddenly has the strength to do this. Not there when your Mom says ur making her feel like she is crazy (and my brother who she hasn't seen in months). She also saw a little girl who was bad. No clue that you have to bathe and clean up after this person.
You can't really expect people to understand what you go thru. You really need help. Hire an aide, if u can't afford it, see if you can get in home Medicaid for your husband. You are burnt out, one person cannot do what you r doing 24/7. Ur husband will only get worse. You deserve a break. You place him and visit. Then you go home to peace and quiet. Have a life. There is nothing wrong with that. I have promised my DH nothing. His worst fear is being in a NH. I told him I would care for him as long as I can. He is a 200lb man. I an 5ft tall. We are both in our mid 70s. Never know what life will bring.
You don’t owe anyone explanations .
Then you get off the phone. Say “I have to hang up now my husband needs me “.
And please get more in-home help for your husband so you can get out more and do some things you enjoy as you're letting such petty things bother you because you are beyond burnt out.
If you're not careful you will be in the 40% of caregivers who die before the one they're caring for with dementia, from stress related issues.
that get it is my sister. Her husband has
Parkinson's.
You do what is best for you and your husband. If friend had done what you asked, there would have been no problem. I was just talking to a couple who took care of her mother. He said "people have no idea if they haven't been there". Maybe thats what you need to say.
I just skimmed over ur posts. August you asked when do u know its time to place DH. I think now is the time. You are burnt out. You need to see an elder lawyer to split ur assets. His split going to his care. When gone you apply for Medicaid. You remain in the home, have a car and enough money from monthly income to live on. If you have no assets, get him placed now. Talk to a Medicaid caseworker on how to proceed. An elder lawyer can help u here too.
Only YOU know the details, so this is in your own ball court. YOU must make the decisions YOU feel best. I would encourage you to approach it HONESTLY, and to tell each person you no longer want your husband to have their calls, and then tell them exactly why. This blocking without explanation is confusing for all involved. Honesty is best. So please be honest with them. It is not their fault that you have taken on this care and are overwhelmed. You can tell them whatever the truth is. For instance, if their visits with him disturb him, and make his day, hence your OWN day worse, then TELL THEM that. Whatever is the truth, tell them.
They think they know better , or they feel they want to help . I had that experience with my out of touch siblings while taking care of my parents .
It’s especially complicated if the LO has dementia and can show time to these people , who don’t understand dementia .
We are currently having these issues with my FIL . His step family came to visit and we specifically told them if they took FIL out that they are to use the wheelchair . They did not , they let FIL be in control and took him out with his walker . It’s very difficult to get him in and out of a dining chair without arms . And don’t even think about a booth . Restaurants usually do not have dining chairs with arms . Father in law insists on hugging the edges of the table while we try to get him up out of the chair . He thinks he’s helping but he’s just working against us trying to get him up . We use the wheelchair and just leave him in it while out, so we don’t injure our backs .
We’ve had other issues previous to this where these steps thought FIL is more competent than he is . They were supporting my FIL’s insistence that he could live on his own and agreeing with FIL to his face , making it that much tougher to place him , and continued agreeing with him after he was placed , causing a lot of stress and grief for FIL and DH and I .
If interested in being somewhat tactful: "I know you don't understand my life. I don't expect you to understand my life; but I DO expect you to acknowledge that my life, right now, taking care of MY husband is very, very different from yours. Please keep that in mind when you talk to me about this situation with this "friend" who has shown me that he is NO friend of me or my husband - who, by the way, is YOUR relative, and the person who, I would hope given his circumstances, you should have the best interest in mind."
If no interest in being tactful: "I will NOT reconsider. And I will thank YOU for minding your own business. This has NOTHING WHATSOEVER to do with you. I WILL NOT discuss it any further with you; if you bring this up again, I am simply going to hang up on you, or tell you to leave my house."
You have enough going on to be literally worrying yourself sick over this. There isn't much you can control about your husband's health, but this is one thing you CAN have control over.
(((hugs)))
Time to rethink this care situation and perhaps re-map it so that you retain your sanity.