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    Caregivers: What do You Need?
    Judith L London, PhD posted:
    Hi Everyone,

    For you caregivers out there, what do you feel would help ease the burden?

    1. Someone to give me a break.

    2. Suggestions with behaviors that are problematic.

    3. People to visit us.

    4. Other.

    You can vote yes or no on each item and add your own ideas.

    Hope to hear from you,
    Anon_232565 responded:
    Tops on my list, of course, is "people to give us a break". Coupled along with this, is "People to visit us". The patient can get terribly lonely. Relieving the caregiver for an hour, or so, and visiting the patient also, is a double blessing. Also, bring a treat. Coffee for both of you and a donut, perhaps. It isn't always so easy for the patient or caregiver to have something on hand for company.
    onlysiblingwhocares responded:
    Someone to give me a break. It's been 9 days since I've had a shower or took my indoor dog outside. Nobody cares but me. Siblings couldn't care less. Why is it this way? It makes me SO angry. I can't take my eyes off of mom for a second. She is in the last stage (like a one year old). I get NO SLEEP. the most sleep I've had is 4 hours a night (while she sleeps) but she rarely sleeps more than 4 hours per night and NEVER a nap...never, ever.
    cjh1203 responded:
    I'd like to respond to this from the other side.

    My uncle (Mom's brother) had Alzheimer's and my aunt was his sole caregiver. My mother and I went out to breakfast with them every Sunday, and Mom talked to my aunt once or twice during the week. Both of us, but especially my mom, offered at least once a week to help my aunt -- to stay with my uncle so she could go out, to pick up medication, take him to the doctor, take them something to eat, or anything that would help. In all the years my uncle was sick, my aunt never once took us up on an offer until the last weekend before he died. She would always say, "Maybe next week" or "this is a bad week". (She did start bringing in nursing help in the last couple of months before he died.)

    Also, during all that time, and even since he died, we have heard from a few people that my aunt told them that nobody in my family ever offered to lift a finger to help. It's extremely hurtful and frustrating to know that people believe that now.

    We would have done anything to help her because we could plainly see what a toll her caregiving roll was taking on her.

    My point is that if someone offers to help, even if it's just a general, "Let me know if I can do anything", take them up on it and tell them exactly what kind of help is needed.

    For someone on the outside, who is unfamiliar with the patient's daily routine, and his/her habits, fears, likes and dislikes, it's very difficult to know what to do, so be as specific and detailed as possible. For many people, the thought of being alone with an Alzheimer's patient can be sort of intimidating if they haven't done it before, so they need as much information as possible. After the first time or two, it will be more comfortable.

    I know that it can be the most frustrating, isolating, heartbreaking, stressful thing in the world to be sole caregiver for an Alzheimer's patient. It can also be very frustrating to see a caregiver who you know needs help, but not know what kind of help he or she needs, or not have your offers accepted. If you need help, don't just wait for someone to turn up at the door -- let them know what you need and ask them to do it. Some people may refuse, but chances are, you will find someone willing to step in and give you a break.

    And if, despite being asked, nobody does offer to help, the local Alzheimer's Association can be a tremendous source of resources and support. They will help you find a way to get the respite you need.

    My heart goes out to anyone in this situation.

    ifeelveryalone responded:
    I would be very appreciative if someone would give me a break. So far I've had two days away in 7 years. Not much of a break. It would also be nice for people to come visit, but it seems that friends and family avoid my mom and me. I would also appreciate suggestions for problematic behavior. However, I must solve those problems myself.
    cjh1203 replied to ifeelveryalone's response:
    Hi Karen. I didn't see this post until today.

    Have you asked for help, but have been refused? Two days off in seven years is just awful -- you can't keep doing that.

    Please, please contact the Alzheimer's Association and talk to someone there about your situation. You don't have to solve these problems yourself. I know you feel completely alone, but they've dealt with this kind of thing a lot, and they can help you. They can give you ideas for dealing with your father, and offer resources and advice that can help you change things.

    I know I seem like a nag! My heart just breaks for you, though, and I think the Alzheimer's Association is your very best hope for making things better for yourself and your mom.

    SusanJoG responded:
    I need help getting my husband to take a shower. I've tried everything short of throwing him into the yard to hose him down or tying him to the hood of the car and driving through the car wash.
    cjh1203 replied to SusanJoG's response:
    Hi Susan. I'm sure this is really frustrating. It seems like it's a problem with most Alzheimer's patients and caregivers at some point.

    I found this article that has some really helpful suggestions. Maybe there's something there that will work for you.

    Also, you might pay attention to whether he seems fearful or uncomfortable when he looks in the mirror. Alzheimer's patients often think the person in the mirror is someone else, and it can be disturbing for them to think that a stranger is watching them undress and bathe.

    Hope you don't have to resort to hosing him off or running him through the car wash!

    2010guardian replied to ifeelveryalone's response:
    Dear 'alone'

    My heart goes out to you and others who no one wants to visit or help. At this time, I don't need very much help to care for my husband. We have our 'lunch friends' and he is able to go out and socialize. However, I've noticed how some distant relatives acted when we happened to be at the same social gathering last June. They usually sit with us, but now they go off by themselves and just look our way and talk about us. (I assume my husband).

    I always stress to people that he can carry on a conversation and he does have his bad days too, but mostly good. I believe the disease is very intimidating because the brain cells are dying and it is a scary thing to try to talk with someone who has brain damage.

    No, you don't have to solve the problems yourself. I believe that you have a support system that you may not have considered. This Community is a good place to start. Ask your doctor to recommend some home healthcare. Some counties have a program of respite care volunteers. I believe when the time comes for me to call in help, I would stay with the helper a few times to get acquainted with the situation. Also, I have a lady who comes in 2 hours a week to help with the cleaning.

    My heart goes out to you.

    Guardian Kathy
    quietnight replied to onlysiblingwhocares's response:
    Does the dog go to the bathroom inside? You really Do need some help. I am facing the caregiver role, and I am so afraid I can't do it.
    balmayne1 replied to onlysiblingwhocares's response:
    I really do feel sorry for you.

    Have you thought of putting your mom in a retirement home?

    I think that would be best for you and your mom.

    cjh1203 responded:
    Ifeelveryalone (Karen), onlysiblingwhocares, and SusanJoG, I hope you'll continue to post here. Even if we're limited in the help we can offer you, we're always here for moral support.

    Caregiving can be so isolating and, even if it's just strangers online, having someone to vent to can make a difference.


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