When is the nursing home best choice for all involved

[pete4sake]

After a recent hospital stay for a complex infection I developed 2 large pressure sores mStage 3 and other one possibly Stage 4 we have been unsuccessful in the last 2 weeks since my discharge to set up any kind of regular home health care The best scenario for home health in my area is a r.andom hour maybe twice a week no regular times etc. essentially no help and insurance wouldn?t cover it anyway. There are no. Pca type services offered so Basically it?s either my wife or the nursing My wife has a high stress job that has her working about 12 hours a day She insists she can handle my cares as well I estimate on bp/shower days that is at least 6 hours and maybe 3 more on off days I only leave the bed for 1 hour shower and bp need transfer help although my. Wife insists she can handle she had two melt downs this week already
this looks to be a minimal 6 month ordeal if things go well

i really dont don?t know what to do
also neither of us have anymore to talk to as our ?friends ? are superficial at best

[SCI-Nurse]

You could explore a short-term nursing home stay in a nursing home that has a wound care program. Medicare may pay for this, as skilled care would be needed. It is a last resort though, and you should be making plans while you are there to get back home with sufficient support. Once your wounds are closed, it is likely Medicare will stop paying, and unless you also have Medicaid, you would then convert to private pay. This is going to be much more expensive than hiring private PCAs (not from an agency) and staying in your own home.

Also, with stage III and IV pressure ulcers, you should not be sitting at all, even for bathing or bowel care. That care should be done in bed.

(KLD)

[pete4sake]

Thanks for reply I am not able to do bowel care In bed and there are certainly no pca s or private pay people I my rural area that would even consider bowel care even if I trained them also nearest wound care is in a clinic about a half hour drive they want me to come once a week and off load rest of time I don’t see any solution except maybe a nursing home 2 to 3 hours away

[pete4sake]

Thanks for moving thread as I see similar topics I can learn from

[Tetracyclone]

Pete-
I did not answer yesterday- I wanted time to reflect. Of course, the biggest problem with nursing home care is that it is often negligent, so you might not get your wounds healed. I agree with you that your situation is not 'sustainable." Something will give out- either your wife or your marriage. Consider the possibility of using a nursing home for shorter periods that give you wife break, if this is possible. Every other week? Every third week? Such a plan would also give you an opportunity to test out a home's quality before committing to a longer term. Insurance coverage may b impossible for such a plan, I don't know, but it might be worth internet research and some phone calls to find out.

As we have to say too often, it is heartbreaking that you cannot find aids to help. Keep us informed.

[Patrick Madsen]

Pete-
I did not answer yesterday- I wanted time to reflect. Of course, the biggest problem with nursing home care is that it is often negligent, so you might not get your wounds healed. I agree with you that your situation is not 'sustainable." Something will give out- either your wife or your marriage. Consider the possibility of using a nursing home for shorter periods that give you wife break, if this is possible. Every other week? Every third week? Such a plan would also give you an opportunity to test out a home's quality before committing to a longer term. Insurance coverage may b impossible for such a plan, I don't know, but it might be worth internet research and some phone calls to find out.

As we have to say too often, it is heartbreaking that you cannot find aids to help. Keep us informed.

What T. said. Also, it'll just be a matter of time before it gets infected and sepsis will travel to the nearest blood flow. Happened to me after three or more years of trying to get it to heal. 10 days before the scheduled surgery, I got sepsis and if not for my wife insisting we go to ER, the ER doc said it would have been too late if I had waited any longer. My plastic surgeon came in, it was a Sunday evening, and supervised the surgery cleaning out where it was traveling to. He said sepsis seems to have a mind of it's own and travels to the nearest artery or vein. Caused a lot of damage that otherwise would have been a simple flap.

God Bless the wives and caregivers. It's time to see a plastic surgeon and start the process. It is such a relief not having to do what you are doing now. It was wearing mmy wife and I down to the point I was ready to give up.

[Iolas]

Pete, sorry to hear this. I, like many others here, relate to the utter shittiness of the situation and the ever looming question--to nursing home or not.

Like KLD says, if you can get Medicare to cover a nursing home with a wound care program, I think it's a viable option to give both of you some much needed space, peace of mind, and time to deliberate on next steps. That's what it was like for me when I stayed at one for 2-3 months for a stage 3 wound. Even though the care was sub-par, my privacy and freedom practically non-existent, my entire life exsanguinated, at least I wasn't fighting with or burdening my loved ones! That was something, especially when we've lost and continue to lose so much already.

That's the only reason why I continue to consider nursing homes for temporary stays. I was taken care of by some truly wonderful people but I was also physically abused on my last night there, and it was an eye-opening experience I'll never forget. Even though I would voluntarily go back to one to give my family a break, at risk to my health and safety, I'd have to be dragged there screaming and clawing for a long-term stay.

I hope you can find another solution, even if it's later down the line or moving to an area where there is more help.

[pete4sake]

Seems like with other SCI issues choosing between options loaded with major down sides We are going to avoid nursing home for now because we both feel care will be detrimental to my health. It would be different if we were choosing a SCI rehab type place instead of a rural nursing home I really don,t fear abuse just lack of adequate care. My saintly wife says she can handle it and sounds like her boss will give her some flexibility too I will do my best to hold up my end by trying to keep a positive attitude and work hard at being productive. Going to experiment with canning from bed next week and getting rid of foley

[Iolas]

Yay, that's good to hear! Both fingers crossed for you!

Gosh, that sounds fun. I've always wanted to can jam.

[Cris]

One day broke my femur and the emergency room wouldn't discharge me home because they didn't think I could take care of myself. Basically after waiting hours and hours and hours agreed to go to a nursing home and thank God they dropped me.

It was an absolute nightmare, the nursing home was 50 feet from the train tracks, bright lights and people screaming. Transferring me from the stretcher/gurney to somewhere else they drop me.

Immediately demanded to go back to the emergency room for another x-ray (the leg had shifted slightly) but there was no way in the realm of possibilities was ever going back to that nursing home.

The ER did discharge me to my house and life went on like usual.

The reason for the story is spinal cord injury care can be really rough on the relationships and if you can, it may be best to bite the bullet and give your wife some time off. However, as you read above there is no way it will ever happen to me again.

You must be an aggressive advocate for yourself to make sure they're taking care of your skin and not just housing you.

Personally believe that you get better care, much better care, in your own home environment. As long as you can handle the logistics and maybe contact churches in the area for caregiver relief.

Hope you come out of this situation healed, healthy and happy.

[pete4sake]

I am glad you are sharing your stories with me I know there will be many ups and downs during this journey just this morning some urine spilled while she emptied leg bag tears came so hard to take...