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Re: Is anyone taking care of a spouse?

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Message 141 of 286

So I learned yesterday that one of the ladies who comes into our house to help me care for my husband can no longer help pull him up in the chair.  This doesn't sound like a big deal but it is.  My husband doesn't have the ability to push himself all the way back in the chair and I don't have the physical ability to pull him back all the way sometimes either.  He is becoming more and more debiliated and I'm having trouble coping with his loss.  I have other ladies I can ask to help, it's just things changing again, it gets so frustrating.  It seems about the time I feel I have everything under control, BANG!  Something happens.  It would be easier if I had family who cared but I don't.  Yes, I have friends and I do share with them but I'm careful not to over share because I want to keep my friends.  I also have a therapist and that helps but there are times like now Sunday morning when stuff just hits me and I just feel overwhelmed and wonder how long can I go on?!?!  So I write on here and I really appreciate your reading and your understanding.  Thank You!  I'm off to get my sweetie up for the day!  I hope your day is a good one!

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Re: Is anyone taking care of a spouse?

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Message 142 of 286
WOW tlmnelson I can so relate to your post! I agree it's heart breaking and frustrating and irritating and so much MORE! Don't count on your husband living only 6 to 12 months, he could surprise everyone a live much longer! I'm glad you have supports, and keep writing, it does help to express your feelings! Sending you lots of prayers and positive energy! lmb
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Re: Is anyone taking care of a spouse?

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Message 143 of 286
Yes. I am taking care of my husband. He has severe frontotemporal dementia with semantic aphasia. Basically, his speech is scrambled. These days, he barely speaks. My husband was so fascinating - a genius, former Navy Commander with several degrees, actor, model, entertainer! I was an entertainer as well. We were living this crazy, exciting life. Then he began to forget the names of everyday things. It just got gradually worse and now he cannot remember or recall anything and can't do anything for himself, except wander all day and eat and drink by himself. He doesn't know anyone, not even me, but he knows I'm his person! I still look for ways to find joy in Husband 2.0 each day. I cry--A LOT, but I have the people on this site, a gifted hypnotherapist, a therapist and a psychiatrist. I highly suggest therapy, a local support group, this site, anybody who you can share your heartache and concerns. It helps immensely. He's 70 and I'm 55. We've been together 22 years, married for 11. I am heartbroken at the prospect of life without him. Last week a doctor blurted out that we may only have 6 -12 months. Next time hit me in the head with a baseball bat, it would have hurt less and I'd have something to show for it. Geez!
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Re: Is anyone taking care of a spouse?

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Message 144 of 286

Hospice can be utilized after a physician has certified that death is most likely to be within 6-months (180 days).

 

 

* * * * It's Always Something . . . Roseanne Roseannadanna
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Re: Is anyone taking care of a spouse?

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Message 145 of 286
thank you, this is a real problem, since I don't have much time to myself. Mars
Mars
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Re: Is anyone taking care of a spouse?

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Message 146 of 286

@mg50694312 wrote:

I worked with hopice when my Dad was terminally ill.  Hospice was wonderful and they took care of everything at the end.  My wife just spent 4 weeks in the hospital with 2 weeks in ICU and was released a couple of days ago.  She had Drs. coming in and telling her she was going to be alright.  I even began to believe it until a nurse practitioner told her the truth.  My wife chose not to believe her.  She came home and is now bed ridden and can only get up with assistance.  It is very hard to see a previously strong and vibrant wife reduced to this within a year.  Her deterioration is pretty obvious.  This evening she began to cry and said that she must be very sick and she must be dying.  I assured her I would be with her until the end.  We may now be able to go forward and discuss end of life.  Her Dr. said she is a flu from passing away.  I will continue to support her, but she is not far from a skilled nursing home to care for her much better than we can at home.   Once that occurs, hospice will not be far away.


MG, your story about your wife is heart breaking. Before our blood supply was safe, she contracted HepC, and now her liver is failing. She sounds like she is still with it and oriented to what's going on, which makes her very sad. To be reliant on you, too weak to participate actively in life, and feeling hopeless... that is a terrible way to live. I'm glad you have your faith. Does she share it? Is someone from your faith community coming to visit, and to pray with you? 

 

From your previous posts, you shared that your Dad received hospice care, and that you have had good experiences with nursing home care. My father was in one for 7 years following a stroke. There was no way he could be cared for at home. For your wife, though, there are many options, and just for the sake of giving you a sense of hope for the options, let me lay some out.

 

You can hire home care aides. Even for a few hours once a week, with an aide coming at a set time, you know you'll have a few hours to get out, get a haircut, and go grocery shopping. Around my area (the Washington DC area), the aides are about 22 dollars an hour, which is not cheap. But you go through an agency, so they are bonded and trained professionals, and even if they aren't doing a whole lot, they are there. And can bathe her, do her hair, do a load of laundry, heat up a meal. 

 

Although you sound like you don't want to confide in your children, perhaps they can take turns visiting her and giving you a break. Each of your kids have a relationship with her, and i hope that everyone would benefit from being together, even if she doesn't feel well. I bet they are worried about both of you.

 

Hospice IS an option right now. Even though most people think of it as necessary and helpful only at the very end of life, people receiving hospice care at home actually live longer on average than their counterparts who don't receive the care. Because an RN comes at least once a week and adjust medications with her doctor carefully. Because an aide comes to bathe her. Because a chaplain comes for deep conversation. Because a social worker is available to help with recommendations on home care, on disability, pension, funeral arrangements... and to help with conversations with adult children and grandchildren, too. 

 

if her doctors are not offering any treatments that will help her get better from the root causes of illness, she could benefit from the palliative care that a hospice doctor provides, with the team of professionals that come to you and her.

 

she is lucky to have you as a husband

 

what do you think? what questions do you have now?

 

Jane,

used to be a geriatric care manager, now is a hospice social worker

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Re: Is anyone taking care of a spouse?

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Message 147 of 286

pennypincher81 wrote:

I have been taking care of my 90-year old husband for the last 7 years.  He has Lewy Body Dementia and Parkinsons.  I was going through chemo and radiation for breast cancer when my husband started having problems.  I am 87 years of age and have other health issues.  I am not able to do the actual caretaking, but do have help around the clock.  I know it is very difficult to do all that is needed day after day for your husband.  Even though I have help, I am usually here overseeing things and tending to his meals.  It is a very lonely world now for me, and I know it must be for you too.  My faith in God keeps me going - without Him I would be locked up in an institution!  


I'm glad you have 24 hour care, and your deep faith!  You are doing the caretaking, by overseeing, keeping track, etc.
Does your community have doctors who do housecalls? The area i live in has several practices where doctors accept medicare and see people who are 'home bound.'  It's wonderful not to have to take someone to the doctor. The doctor comes to you! Might be worth exploring.
Best of luck to you. And please keep sharing. For example, how did you find good, reliable home care support? 
Jane

 

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Re: Is anyone taking care of a spouse?

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Message 148 of 286

@mv6544509 wrote:
thank you-If I titled snail mail, att'n, confidential-would only the Dr open and read? My spouse is so suspicious anyway.

Hi Mars. I don't think so. Doctors have lots of people who work for them. I would think someone else would see your request. Perhaps it is best to go there in person and hand it to the doctor? Or, hand it to her/his nurse? You'd have to wait in the waiting room for a bit, but if you explain to the receptionist that it is a note about a patient, it might work. It is very hard to get to doctors which is so unfortunate, but you have important news to share and it needs to be share, for your spouse's behalf.

 

I'm sorry your spouse is so suspicious. This suspicious/bordering on paranoid behavior and outlook is sadly very common in people with cognitive impairments. there are medications that help, believe it or not, including a very old medication called haloperidol. i once had a patient (a client, when i was her geriatric care manager), who was extremely paranoid. She thought the FBI was filming her every move (didn't tell her about the NSA... Sigh...). She was also constantly calling the police, who referred her to adult protective services, who assigned her a guardian, who hired me. Anyway, finally i got her to agree to see a psychiatrist, for 'stress.'  She liked him, he was very gentle and affirming of her, and he put her on haloperidol, for 'stress'. After a few weeks, she reported that the voices she heard, and her pounding fear, were 'less intense.'  Progress!  Then her daughter in a fit of pique told her she was on 'antipsychotics.'  Poof. She refused to take them any more. 

 

tough stuff. Please keep writing. there is so much wisdom in this community.

 

jane

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Re: Is anyone taking care of a spouse?

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Message 149 of 286

I worked with hopice when my Dad was terminally ill.  Hospice was wonderful and they took care of everything at the end.  My wife just spent 4 weeks in the hospital with 2 weeks in ICU and was released a couple of days ago.  She had Drs. coming in and telling her she was going to be alright.  I even began to believe it until a nurse practitioner told her the truth.  My wife chose not to believe her.  She came home and is now bed ridden and can only get up with assistance.  It is very hard to see a previously strong and vibrant wife reduced to this within a year.  Her deterioration is pretty obvious.  This evening she began to cry and said that she must be very sick and she must be dying.  I assured her I would be with her until the end.  We may now be able to go forward and discuss end of life.  Her Dr. said she is a flu from passing away.  I will continue to support her, but she is not far from a skilled nursing home to care for her much better than we can at home.   Once that occurs, hospice will not be far away.

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Re: Is anyone taking care of a spouse?

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Message 150 of 286
Hugs!
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