I am his wife - also elderly - and I'm his sole caregiver. I believe we are doing just fine, but I'm afraid home health workers will say he isn't getting proper care. Should I be worried? Can he be removed from our home against his will? Do they have legal authority over us? It's scary.

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GardenArtist, I just love it that you've given so much time and thought to trying to help me feel better. Thank you for that.

I'm pretty ignorant about air mattresses. We're getting whatever kind the doctor wants him to have. I guess I'll find out more about it when it gets here.

When I was young I was NEVER going to be the kind of old person who stubbornly resisted change, but here I am, resisting, resisting, resisting. I dread having to make friends with this new bed. I want to stay with the old and familiar.

As far as changing sheets when the home health nurse is here, that's a possibility, but I'm hoping they won't be here forever. I'm thinking his butt and legs will clear up and the nurses will go away and leave us in peace. So, I want - so much - for my husband and me to be able to manage on our own. We LIKE being left alone. It's worrisome to us to have people coming in so often. Do I sound mean and ungrateful? Yes, I guess I do. (long sigh here)

We're not very neighborly or sociable - my darling and me. We need to be free to nap during the day when necessary. I need sleep so bad. Sometimes it's the ache in my joints that keep me up at night. Sometimes it's MS symptoms that keep me up comforting my husband. Either way, I need to be free to sleep during the day. And would you believe it's the one thing the world seems to plot to keep me from doing.

We have a very tiny one-bedroom apartment. Ideal for our needs. Easy for me to keep clean ... well, if not clean, exactly, at least neat. What's supposed to be a living room is a fully equiped hospital room. Husband's bed has center stage and my life revolves around him ... and I wouldn't have it any other way.
We don't have a kitchen table. His meals are eaten in bed, of course, and I sit here at my computer desk which is located at the foot of his hospital bed. I no longer cook. Lots of things I no longer do. Well, but I'm old now and my limited strength must be directed toward caring for my husband. Nothing else much matters. We're fine. And we're happy.

I think the reason he and I can be so contented with such a quiet reclusive way of life is because we lived such full and busy lives when we were young. He, in his world ... and I, in mine. He was once a young strong man working in the steel mills in Ohio. He went on hunting trips to Wyoming. He fished. He went into the forests and cut his own winter supply of firewood. He LIVED.

And I ... I was an Army wife for so many years and moved around through many states here in America as well as living in and touring other countries. I more than had my fill of travel. Never really wanted to travel in the first place. Got homesick every day at sundown ... even when I didn't know where home was. (smile)

You and I are miles apart in our interests although I can tell - just by reading your messages - that you're someone I'd be completely comfortable with ... (with whom I'd be completely comfortable?) (is grammar important here?) (Lord! I hope not.) I've never gardened. I don't know a bitterweed from a dandelion. And while I admire your knowledge of and love for good music, it's totally wasted on me. I grew up in Arkansas way back in the 40's, listening to the Grand Ole Opry on a battery radio every Saturday night. There you have it. That sums me up nicely.

What gives me pleasure is writing. I have a blog. It isn't one bit private. If you type in The Best Five Are Mine it will appear before your very eyes. (smile)

Right this minute my biggest worry is preparing for a home health nurse who is coming in at 1 to change the dressings on my husband's legs.

Thank you again for being so willing to help me feel better. I do appreciate it.
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Polly, good news on the air mattress - I assume it is the rotating kind, though? That's what's needed to combat the tendency for someone immobile to develop pressure sores.

It's been so long I don't recall if twin sheets fit, but I had doubles so I believe I used those. That allowed for sheets to move a bit without being pulled out. Ii think I also used flannel sheets during the winter for extra comfort.

As to the turning, I'm wondering if you could just change the sheets when the home health care workers are there to help hold him when he's on his left side? We did that when my father was limited to tube feeding. I was so tired the nurse volunteered to do it so I could nap for 1/2 hour or so.

Your apprehension and anxiety isn't unusual. Don't beat yourself up over it - in my experience, it's normal. You have a tremendous responsibility in caring for both of you, you're both facing physical challenges, and you're worried about how to accomplish what needs to be done. It's normal to be concerned and worry. And I think it's part of being a woman.

When my brain gets stuck in neutral in its worry mode, sometimes it's like driving on ice - the wheels just spin and don't go anywhere.

I have to think of something that's so relaxing it surmounts the anxiety. I design gardens in my mind - that's the best for me because it's relaxing. So is music, especially certain classical music. Beethoven's symphonies always "take me out of myself"; Mozart has the same effect. I also have CDs especially for relaxation; the music is so soothing that I sometimes begin to fall asleep. Harp music is especially relaxing.

Reading novels can be stimulative so that's helpful but not at night.

Looking at calendars with photos of baby animals or gardens is another relaxing technique. Who can resist smiling when viewing photos of sweet cuddly kittens or little puppies romping around?

There are also certain comfort foods, of which chocolate rates as one. But I don't know if RA requires a certain diet limited in inflammatory agents; if so, chocolate wouldn't be such a good choice.

I've also found that a glass of cider calms me down; it brings to mind images of the soft earthy colors of fall, of the beauty of changing leaves, the fragrance of fall rains, and the bounty of the harvest. Just the thoughts soothe and relax me.

I wonder if some of these might work for you? If we can't stop worrying, perhaps the best we can do is to mitigate its effects with frequent breaks that relax us.
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Yes! Thank you for trying to help us. The air mattress has already been ordered. We found out from the home health people that we're also due a new hospital bed. The one we have now was bought about ten years ago. So ... a new bed complete with air mattress has been ordered and we're waiting patiently to hear when it will arrive. I'm assuming Medicare will pay. I HOPE Medicare will pay. It's always a little scary, waiting to find out these things.

Did regular twin size sheets fit on your father's mattress? Sheets are a big worry to us. My husband is unable to turn on his left side. He can turn on his right side only. So, the way sheets are changed in the hospital ... turning patients first one way and then back over the other ... is completely beyond our capabilities. I'll be worried until the new bed and mattress are installed and I get the sheet business figured out.

My husband is fond of saying, "worrying is my wife's job. And she's SO GOOD at it." (grin)

And I do worry too much. I don't seem to know how to stop.

Thank you for responding ...
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Polly, ask the home health care nurse to contact the doctor who prescribed their care, or call yourself, and ask for an alternating pressure pad mattress. My father used one on his hospital bed; they're used in hospitals, and I think it would help decrease the bed sores.

You seem like a very strong and determined woman; I wish you success and comfort in the plan you've chosen, and hope that everything works out well for you.
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Three years ... Do I really seriously have to think that far ahead? Can't I just bumble along one day at a time? Don't answer that. I already know it's foolish not to have a back up plan.

My RA ... I'd never been sick in my life when this disease hit me about thirteen years ago and I had a very very rough first year of it ... partly because I refused to go to a doctor ... kept thinking I had the worst case of flu known to civilized man, but I would get over it. I would! I just would! But, no ... I didn't. So ... doctors gave me Plaquenil to start with and that precious drug snatched me back from the grave and I still take it today. I also took Methotrexate for eight months way back in the beginning.. I should have quit that stuff in eight days. It made me so very very sick. Next, the rheumatologist wanted to put me on Humira and that's when I put on the brakes. The risks - I believed - outweighed the possible benefits. I wanted no part of it. So ... for the past ten years I only see a general practioner once a year to get my Plaquenil prescription renewed. And that's the full extent of my medical program. I do suffer. My joints do ache. But, I have lots more good hours than bad. I use a walker when I'm outside, but inside our tiny apartment I feel quite safe without it.

My husband is quite self-sufficient. He has everything at his fingertips on his over-the-bed table. A big lazy susan always holds snacks and extra water. He has his cordless phone and remotes to operate the position of his hospital bed and the big TV on the wall and the DVDs and the fan that blows across his bed. His mind works well. MS has not destroyed his ability to think and reason and act. He's often on the phone, dealing with the bank or insurance company or calling a maintenance man to fix the water heater or whatever. He sits up in bed all the time (which explains the bed sores on his butt) He will only lie flat long enough to be bathed or have his pads changed, then he's right back up again. He even sleeps - off and on - day and night - in an upright position.

I'm not strong enough to turn him on his side by myself, but he and I together have perfected a way of getting the job done. His one good left arm is still strong and he uses it to help pull his weight over. We turn him only to have BMs or to change the bandages on his bottom. The bottom sheet on his hospital bed is only changed once every three months. When that happens, I have to have someone here to lift him up in the hoyer lift. I can no longer do that part. In between sheet changes I keep clean strips of sheets beneath his body so that his skin is never touching that precious bottom sheet. Those sheet pieces are changed (and washed and dried) every time he's turned on his side, so he's always on a clean bed. We've figured out - through the years - a perfect way to keep him dry by arranging, stacking on and tucking in poise pads on the front of his body and weighting those poise pads down with a homemade beanbag. Yes! don't laugh. It works well. Of course it only works because his body is paralyzed and cannot move. It isn't a plan that would work for an active male patient. We keep lots underpads beneath him too. But, one seldom gets wet. I change the poise pad arrangement every 8 to 12 hours. A catheter was an option, but we didn't want that because we were afraid of urinary tract infections.

If I ever become unable to be up on my feet, we'll have to hire more household help to come in. I'm braced for that. I don't like it, but I'm resigned. (smile)

I don't know how assisted living would work for a couple like us. My husband would require total care. I've researched that and found that it costs six to eight thousand a month. It wouldn't take too many of those kinds of months to wipe us out financially ... then, what would happen? Charity cases in a nursing home? That thought makes me cringe.

Here in our own little apartment, my husband is very much in charge of his little world. He has a life. In a nursing home he'd be lying in bed like a sick person. He doesn't WANT to be a sick person. And neither do I.

We absolutely must figure out workable ways to remain right where we are.

Right now we've got to get along with these home health people and try not to do anything to rock the boat.

We know we only have a fragile hold on life. We know we're on shaky ground. Just one fall for me ... one broken hip ... or one stroke ... and we'd be in bad trouble. If I sink, I take him down with me. I must NOT sink.

Thank you for responding. I feel better about the not-very-great-possibility of somebody declaring me an unfit caregiver and removing my husband to safety. (for his own good) He would die if that ever happened. I would too.
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Polly, I wouldn't listen to that "friend"... you sound from the way you write here that you are doing everything right.

What is your 3-year plan in regard to your hubby's and your health. You will be in your early 80's and you have rheumatoid arthritis. Do you think you will still be able to physically lift or roll your husband for his various medical and personal needs? Do you plan on hiring caregivers to give you a hand more hours during the day? Or do you think that assisted living might be in the future where the both of you can stay?
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My beloved husband has MS. Diagnosed back in '86. He is completely paralyzed except for his left arm, and he's been confined to a hospital bed for the past five years. Sounds sad and dreary doesn't it? But, no, it isn't that way at all. We love each other very much and are so grateful to have each other and to be living in peace. We both had previous lives. We've been married to each other twelve years. I had my 79th birthday last week and I have rheumatoid arthritis. Still, I take good care of my husband, feed him good, keep him clean, manage our small apartment, laundry, meals and taking the trash out. We do okay. We do miles better than okay. And we're happy. Happy counts!

We have a good helper who comes in once a week. She cuts his hair, does our grocery shopping and helps out. That part is okay.

Two months ago my husband had to go to the hospital with pressure sores on his behind. I'd had good luck all these years, doctoring them with a home remedy of betadine and sugar. This time the method failed and we needed help. So ... when he came home from the hospital we got home health workers coming in twice a week, applying some kind of "silver" medicated bandages to his pressure sores, and his bottom is clearing right up and we're weak with relief and now we are "silver" converts and betadine/sugar is only a distant memory.

The home health workers are also wrapping his legs with "zinc" bandages and it seems to us we're going backwards with the leg progress. His best leg was fine until they began their treatments. Now, it's developing open sores where none existed before and I'm feeling real uneasy.

A "friend" warned me that if home health workers reported to their supervisors that I wasn't an adequate caregiver and my husband wasn't getting proper care, they had the legal right to remove him from our home and put him in a "skilled facility" whatever THAT means. He and I would be ruined if that occurred.

There's no big money involved in our situation. Thank God. We each owned our homes twelve years ago and were financially okay. Barely okay. But okay. We sold our homes and moved into this tiny apartment. Best decision we ever made. My husband has three adult children in another state who are hostile toward me and estranged from him because of me. (long sigh here) Why does life have to be so cotton pickin hard? I've always felt uneasy where they're concerned ... knowing if the least thing went wrong with their father's care they'd blame me ... but I never considered that a threat could come from medical people.

But, can it?

What do you think?
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Health Care workers have no right to do anything other than care for your husband. If they felt that there was abuse or neglect, the might report that to their agency, who in turn might report to Adult Protective Services, who might send a social worker to make a home visit. You have "due process rights" one can take away your right to live as you choose unless you've been declared incompetent, and believe me, there's a whole lot that has be proved, testified to and certified before that happens.

Is someone telling you that you shouldn't accept Home Health because they'll snatch your husband away? That's just so untrue. Don't listen to them.
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Polly, I am curious who is placing this unfounded fear into your mind?
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