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Topic Home or Nursing home? Go to previous topic Go to next topic Go to higher level

By Betsey Clarke On 2013.08.21 21:50
It's been awhile since I've been on this site, having to work, and take care of everything is tiring. Anyway, my husband (diagnosed just 4 yrs ago) is now in a skilled nursing facility 30 miles away. The place is better than I expected. I moved him there after his week of respite care from a VA facility, as he has developed pressure wounds due to his not being able to move, either in his hospital bed at home, or in his wheelchair. I wanted the VA to assess his rehab ability, and they said that he would not be able to move himself enough to prevent pressure wounds.... I couldn't move him every two hours around the clock without feeling exhausted. I feel so awful, tho, with him being away from home. He is losing weight from not being able to eat.. down to 135 fom 170 in his prime. Should I bring him home, buy a "turning" mattress ($5000 plus), hire more caregivers (he is on Medicaid) and just tough it out?? Or leave him there, they seem to be truly caring nursing home and feel fortunate to have found it.. I probably could get hospice involved now, if i brought him home. No one (but me) thinks it is a good idea to move him back home. I am really worried. Do you think he would be better at the nursing home, or home? I am sorry for being so depressing..

By carman96 On 2013.08.21 23:16
Betsey, I am so sorry you are going through this. I don't know what to say. If he is being taken care of then he is probably in the best place for now. However, I think it would be good for you to contact hospice to see what they say.
Do you have a social worker or someone to talk to? I'm sure this is the most difficult thing you have ever gone through. I can't even imagine how painful this is for you.
Please take care of yourself, and keep posting to let us know how you are.

By blue2 On 2013.08.22 12:08
Hi Betsey, There are more thoughts on this topic under the post "Why keep spouse at home?" Last post 7-24-13.
I'm sorry you are in this challenging situation. We've had good luck with an inflatable mattress - medicare provided.

By Rempt2 On 2013.08.22 23:14
My husband was in a rehab/nursing home for 2 months. He lost weight there and didn't eat that much (he was down to 120 pounds). He developed a pressure sore there right at the base of his spine which is a bad place as he was sitting on it. After 2 months home it healed. He has continued to lose weight although he does eat. He is down to 110 pounds but has stayed that for a month or so. We recently got a pressure mattress the insurance paid for. It was about $770. I think it helps a lot as he doesn't have any fat to cushion. He can stand and walk some so he can move from chair to bed. I haven't tried hospice yet although the visiting nurse is suggesting something called "bridge to hospice". There are some posts here that say it is very helpful. I have some help during the day while I work and I handle nights and weekends. You could speak to a social worker and see what assistance you would qualify, especially if your husband is a veteran. God bless.

By Betsey Clarke On 2013.08.23 11:41
Thank you to all that posted. I appreciate your input and ideas, and admire the strength of those that can take care of their loved ones at home when PD is advanced. Since his situation changes day by day, I change my mind as to what would be the best for him. This morning, the nursing home called, and now his pressure wound by his tailbone is worse. So now I know that he can get the same problems at the nursing home as he does at home. I will talk to his VA PD dr. Tuesday when we have an appointment (i hope the sore doesn't prevent us from going) and see if the VA will supply a mattess for us. We do have an air mattress that circulates air to prevent wounds, which worked well till he needed to be moved every two hours. There is a air mattress that can turn the patient up to 45 degrees at adjustable times, that is very costly.. but it doesn't hurt to ask to see if they would supply it. I already know that Medicare and Medicaid will not. If we can get that, I think I can bring him home. I did call my VA social worker about it a couple of weeks ago, and she didn't get back to me..Thanks again for all your responses!! What a lifesaver this blog is.

By Betsey Clarke On 2013.08.23 22:19
carman96 you are going to laugh. I just found a bunch of empty sunflower seed shells in the front pocket of my old fat jeans!... hadn't worn them for awhile as I'd lost weight and fit in to my 12's. It must have been a mouse, lol! Shows you what kind of housekeeper I am. No wonder the cat has been in the closet lately.

By carman96 On 2013.08.25 08:14
Betsey, I'm glad you can still laugh! You sound like the same kind of housekeeper that I am. It's good to have old "fat ' jeans instead of new fat jeans! 12 is a good size to be in.
I truly wish you luck and the strength to get through these coming days. Did you ever call hospice? They might have some suggestions. Maybe it is possible to rent one of those mattresses?

By Trusting On 2013.08.25 12:40
Our VA hospital has been wonderful to my husband with Parkinsons. I'm sure they will supply anything your husband needs for home care. I don't think anyone can give you the answer you need for your personal life, but you "trust your gut". Do what you really think is best and act on it. If the Nursing home is best for your husband then let them do their job, but if you feel he would be better at home, then bring him home. Let the VA advise you on what they can supply for you. The St. Louis VA is wonderful. Don't be afraid to ask for what ever it is you need.


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