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I care give for my partner who has Huntington's Disease. I feel as though I am losing myself and who I am. I do nothing but care for him. He is able to walk and get around but has had numerous falls and broken bones etc. I told him I wanted to get somebody in the home to relieve me once in a while but he is insistent on not letting anyone come to the house. I am so depressed and I long for my family and friends. How do I get him to understand this is important to me?

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His doctor can order visiting nurses, and you need them. He may put up a fuss at first, like the first time you leave a child with a sitter, but he will be OK. Go to hdsa.org and find a chapter near you that can help.
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One of ways I've dealt with my parents over this issue, is to point out that IF you lose your health, physical or otherwise, then he will not even have you MOST of the time! You have to take care of your own self, in order to stay healthy and be able to be there for him! And I don't think you have a long debate over it....you just lovingly state the WHY you are putting together this plan and give him an idea of how regularly you will need to be getting your 'break' for self renewal and caring for yourself. I think you need to look at the caregiving like a JOB too....if you are in this for the long haul. YOU need time off during the week that is planned and you need long weekends and regular vacations periodically too....so there should be a 'back up' plan in place for you regularly. And you may need to tell his physician what you would like the 'order' to say. Also, if he falls a lot in your care, what happens if your back goes out or something? You need a back up plan just to keep him safe...along with you. You need time for your own doctor and dental appointments and self care activities too and your physician needs to know you are a full time caregiver, because the stress of that 'job' can bring on all kinds of medical/emotional issues that you need to be watched for. Be pro active with a plan!!
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I need a break myself. I have been caring for my ex-wife for the past 15 months. She's about to drive me crazy. No help from her direct family.
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Sometimes we are not able to explain to other's what our needs are. It's ok. You still can get help into the home & talking with the physician & getting in home health care for you to get out & obtain a new perspective on things is
great & I so support it. Look to elder care in your area too. There are a lot of support systems in place to help in the community. Look into it.
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I agree with Joannes - do not involve yourself in a long debate over this - you have to get a break for yourself, otherwise your husband will have no carer. My mum wants me to be around all the time and I found that when I got a carer in to allow me to go out for just a couple of hours to pursue my own social needs, she showed disapproval, maybe giving me the silent treatment on my return and possibly for a day or so after. I have learnt to deal with this differently now so I never tell her I'm going out to see a friend, or do something else enjoyable. Instead I 'white lie' and say I have to go to the bank, or the doctor, or the dentist, or to do some shopping for her, or whatever - and because these are domestic chores that she can identify with and can't really express disapproval about, she's OK with it. Of course you have to find a carer who will sit with your husband so you don't then worry when you are out that he's falling or coming to some harm. If you don't have that peace of mind it's pointless going out.
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If (as you say) he is able to walk and get around, does he really need someone with him all the time? Wouldn't one of those medical alert alarm buttons that people wear, be enough for him to be on his own for at least a few hours?

If more than that is needed, I agree with the others, just set up the in home assistant, and get out for a while. If he won't use their service, while they are there, let him do without any help for a while. He'll get no sympathy from me if he won't accept help when it's provided. You are not a medical assistive device (that exists only for the purpose of serving a patient) and he does not have the right to turn you into one.
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Stop asking and start telling.
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I would see if the doctor can get Medicaid/medicare to pay for a home health aide on a regular basis. If not, examine the household income and try to find money for a regular home health aide. You will feel better just knowing that you will have some "free" time each day. You probably are not getting enough rest/sleep and it can really pull you down both physically and emotionally.

Good luck
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Rule number one; take care of your self first period.
I understand that about 30 % of caregivers die before the one being cared for.
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I am in the same boat with all these answers. don't think you are being mean and feel guilty about time for yourself. I was in your shoes. right now my mom is in rehab after bp problems and she is staying in for nursing home. talk to her doctor about how YOUR HEALTH is being affected mentally and physically you would be surprised how many don't think its a problem if you don't speak up. my moms dr. finally said one day im worried about you. that is when I said enough is enough and started stepping on toes. I told my family if I get sick what will happen to mom then . it feels good to go to a store and they say ill be with you in a moment to say to them, take your time...SO TAKE SOME TIME FOR YOU..HUGS.
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When I get a break, I don't want to go back but I always do with a renewed perspective. Breaks are an absolute must!
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Blame it on "doctor's orders". When you get a write up from your doctor, have the MD write that you need to go to the gym, or classes to take care of your self. My father's doctor encourages me to get help so I can take care of myself. She will write for in home care IF my dad meets the guidelines. If not, she writes on his visit summary that he will need to help me take care of myself, which might mean someone comes to stay with him several times a week or what ever. I don't know how old you are, but in my Dad's day (he is 94) men ruled the home. He is actually pretty cooperative now, but every once in a while this attitude comes up. Even then, the doctor knows best, thank goodness.
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I would take the wonderful phrase "stop asking and start telling" and put it as "stop asking and start doing." Meaning, put what you need into place. The facts are the facts -- you can't keep this up. Facts don't need permission or agreement to be true.
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You get him to understand by hiring someone to come in and relieve you. You have to take a stand or else he will consume your every waking hour. You might go through a few aides coming into the home, but keep doing it until he recognizes you need some space...good luck!
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Watcher62....me too with my husband
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You need to take care of you. And I'm talking to myself as I type. I'm dealing with pd dementia who thinks she doesn't need home care when I had a total abdominal hysterectomy and needed 8 to 10 wks recup time. Blame it on pd dementia or narcissism but I'm looking at mom and the home care live in as I type
Mom acts pointy and miffed at me. Too bad. It's called reality.
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Meant to say pout not point . Auto correct at it again
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You need to tell your husband, either you hire someone to come in and be there for him so you can have some me time or you will still go out and leave him alone, and if he calls your bluff, do go out even for a short time so he knows you are serious.
I am in the middle of a 4 day respite break from my husband who's in the 6th stage of Alzheimer's still at home with me 24/7 and this is the first break this year, he is still telling the staff he is leaving, I feel bad that he is causing a fuss but I so desperately needed the break. When I took him to the care home I tell him it is a special type of hotel as he is adamant that he is not going into a home, but it did not take long and he was saying I am not staying here, even though he will forget what I say I still let him know I was sorry he felt that way but I was still leaving him there for a few days and would be back to get him, he said when I leave he'll be right behind me, I called the next day and was told he was coming to the desk every 10 minutes to say he was leaving and when was I coming to get him….It is such a treat to be able to stop in a a girl friends house for a cup of tea and visit, which I did on my way home and realized I had not been there for 4 years and little things like getting up to a dry bathroom floor and absolute quiet, what a treat not getting the constant same questions all day…I dread Monday morning when I pick him up. I did this once last fall and he was so good, hardly fussed at all so I was taken back this time, the thing is if I break down or end up sick, who will take care of him??? There is no one around to pitch in.
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I argee with the other and start telling and explain it time for some else to help him. His doctor order visited nurse and another caregiver to help out. Take control of your help first. I have seen also caregiver pasting on before the person they are caring for.
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There have been a few references to children...here's another! When my kids were little and I wanted them to do something like clean their room I'd give them a choice...."Do you want to clean your room OR would you like to clean the garage?" Even if they choose the garage it was still a help for me. You might try giving him the choice of a volunteer( or stay alone) OR a hired nurse?
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To borrow from a commercial slogan..."Just Do It!"
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