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Update on my husband. He has MS and been in wheel chair since 2000. I got burnt out taking care of him and my 3 kids. When in reallity I have been burnt out for years before that, but didn't realize until I looked at some old journals.

I placed him in NH in October because I couldn't get a medicaid waiver for him even tho I was on the list for almost 7 years. Since he has been in the NH he has lost weight and they make him sleep on a bed that is very uncomfortable for him so he now takes a sleeping pill and on pain patch with peraset(sp) because the bed hurts him. He got sores on him butt a few weeks after he was there and they gave him an air mattress that helped him. As soon as there cleared up the took that mattress away. If they give him a shower in the afternoon they stick him in bed for the rest of the night so they don't have to do it later. For the last 3 weeks his feet have been swollen and then they found that he had a sore on the side of him foot. I kept asking them why was his feet swollen and they didn't know. They finally (so they say) ran some tests and everything came back fine. Today when I was walking out the door to bring daughter to friends party, they nursing home called me and told me my husband went outside and was by the street and was disoriented. I told them to send him to the hospital and he said he was waiting for their doctor to call back. They sent him to the hospital and I was able to see him about one hour later and he was not the same. Very disoriented and didn't remember what happened and I told the ER doctor that he wasn't like that. The took tests and it seems that he must of got an infection and now it is in his blood because it wasn't taken care of.

I am now going to try to get help to take him home. It has been very stressful with him there. I thought I would be able to relax. The only problem with that is that now he is weaker then when he left because they wouldn't let him transfer himself when he could because they were in a rush. I know that I can get a hoyer from the VA and a hospital bed.

If that wasn't enough I am in the process of a refi as we had an adjustable mortgage and then of course my homeowners insurance that got doubled last year (FL) has decided not to renew me and thousands of others. Now I have to get insurance before June 1st even though it expires in August.

Well my plans for the day were to work outside in yard but my plans don't seem to work out.
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Donna...

Sorry to read you're having so many problems..to add financial burdens on top of caregiving burdens..ugh...
The nursing home your husband was/is in doesn't really sound too good does it..it reminded me of our hospitals here..shortage of staff so the patients just are not getting the care or help they need whatsoever..what it basically comes down to is family having to be there almost day and night to either a)nag the staff that something needs doing or b)do it themselves...which then makes you wonder why you didn't just keep them at home in the first place..

Is your husband back home now? How is he doing...hope that infection clears up fast..
please post again and let us know how things are going for everyone there...

take care
prairiegal
Hi Prairegal, he was admitted to hospital yestarday, don't know how long they will keep him but when I went last night he seemed to be doing much better than the afternoon. Hopefully I will be able to get some help from the social worker there. I will be going as soon as I get the kids off to school. The three all go to different schools, elementary, middle and high. Spend my days at the buss stop.

Everytime I went there I had to tell them something but then they lie and stick together. Most of the people there should not be in that kind of work, IMO.
{{{Donna}}}

I sense your frustration. You are under so much stress. I hope you have some outlet, be it exercise or a relaxing bath...

When you talk to the social worker, get the number for the state ombudsman to report the NH for neglect. Ask for help with Medicaid to get that waiver... if it takes writing your Congressman or the local news station consumer advocate.

Is there anyone who can help you with the kids, while you deal with all this?

My mother is in a NH. I'm so thankful that she is getting good care there. I do have to stay on them about a few things, but she has finally learned to be a squeaky wheel herself when she needs to be.

I pray things get better for you soon.

Love n hugs,
Barb
Yes, I am going to report them to anyone I can. I am even going to see an attorney. He was sepsis, still on oxygen and saline. He seemed a little better this morning but couldn't seem to get comfortable tonite when I was there.

I talked to the social worker at the hospital and she wasn't helpful, gave me two numbers, one didn't work and the other wasn't any help. Tried to get the social worker at the VA but his phone rang all day and I quess he doesn't have voice mail.

My oldest at home is 15 so it isn't that bad with them anymore. I just start getting overwhelmed and want to shut down and run away, but I guess that is natural.

Will try more phone calls tomarrow, hopefully I can now get him on a medical waiver. I also think you can also get help from medicare but there is a deductible. Need to check the book.

On thursday he said he wasn't feeling well and was in bed, I still can't believe that they couldn't even take his temp, that just doesn't make sense.

He was crying tonite because he said he is sorry that he is being so much trouble. It really does break your heart.

I know that things will work out OK, I just have to get out of overwhelm and figure them out.
Forgot to add:

bamagirl, I am so glad that your Mom is getting the care that she need there, I was told by quite a few people that this was the best place around, maybe for some, but I didn't see it and I really thought that my husband would be OK because he is of sound mind but body going and never thought about something like this. I was just hoping that he could stay there long enough to get his teeth done on medicaid, should have followed my instinct.
Thanks, Donna.

It's so ironic to me that the physically disabled are often mentally okay - except for the stress of their situation and maybe side effects of meds. Then there are the dear dimentia folks, who get around physically well, but mental navigation is no longer their forte.

I'll keep you and your DH in my prayers. Please do try to find an outlet where maybe you are only "whelmed" - just not overly so.

Love n hugs,
Barb
Barb, I will keep you and your family in my prayers also.

Finally saw the Dr. yestarday, said he would probably be discharged in the next day or two. I told the Dr. that I didn't want him to go back their and that I wanted to take him home. He said it would be alright if I would be able to handle it. Then he said that he was going to look into rehab for him so that they can get him as strong as possible.

Still haven't found any help yet, even tho been on the phone for two days. Playing phone tag with some and others aren't returning calls. I am going to call the MS society to see if they can be of any help. The FL medicaid waiver guy I can never seem to get, either on the phone or away from desk.
He's still in hospital but will probably be discharged tomarrow. He will be in rehab for up to two weeks. Don't know what I am going to do as I can't seem to get help. Did get to talk to social worker at VA. Husband was already approved for bed and hoyer so hopefully they will come soon. The hoyer should help if they teach me how to use it.
Hi again Donna...

Glad your husband will be able to go back home...the nursing home he'd been in I don't think was beneficial to his needs nor to yours...
It's terrible you can't get hold of social workers when you need them..I remember ours here at our hospitals were so helpful to me, they knew just how and where to get pretty much anything we needed before my moms release..don't know how I'd have managed otherwise...
If your husbands in rehab for a couple of weeks do try to get as many things in place while he is in there, it will be so much easier on both of you if upon his release, everything is set up at home for him, and if you know how to use it all..

let us know how it all goes..
take care
prairiegal
I thought I was going to get rest today, but just got a call that the VA is sending the hospital bed already. We just put in the order on Thursday. Now I have to paint the room because it gets here. Need to get rid of my bed I guess because it isn't big enough for both. Have to go buy paint. Needed to be painted for a while but always put it off.

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