Are any nursing home patients happy?

[Tawanda]

I kind of stole this question from the Caregivers forum: "Are any caregivers happy?". The general consensus seems to be a resounding NO. It seems almost seems selfish NOT to enter a nursing home when you are destroying the quality of life of healthy family members (remember when we were the healthy ones ?). This then begs the above question, are any nursing home patients (or to be P.C., "Rehabilitation Center" patients) happy?

[RockysMom]

I'm very lucky to be in a high quality, caring facility where the staff are exceptionally kind. There's plenty of small problems but they try their best to fix them all.

However, I desperately want to get home although at the moment, I feel very down about how things will be when I get there. I'm very depressed but I see my loving spouse every day but he and I desperately wish for things to be as they were about two years ago.

[mm247]

yes

There are bad attitudes in rehab and nursing centers but there are so many of us workers there that love love love what we do.
I work at a facility and I love my patients. The ones that live there you get to know and enjoy. The ones that are there for short term rehab amaze and inspire with different paths they have walked through life.
If you or your loved one is not receiving the care you deserve speak up and let someone know. Director of nursing, Administrator etc

[Jules A]

Great topic!

Although I'm not in a nursing home at this time I agree 100% about not wanting to make my family live their lives as if they have MS. One of us cursed by it is enough, imo.

I have said it before, when I'm no longer to care for myself I am going to a nursing home. The same for my family members. On the off chance that I'm not debilitated before my Mom or husband when the time comes that they can't care for their ADLs although it would make me very sad, they are going to a nursing home.

[palmtree]

This topic is so central for most of us. I cannot/will not subject my family members to the life destroying task of caring for me with advanced MS.

As I wrote in last summer, I went to a "rehab"center for 24 hours. I have asthma and allergies and I found the environment to be insurviveable. The staff was very friendly and upbeat but I told them one thing: "GET ME OUT OF HERE". I couldn't breathe because the air quality was so bad. The nurses told me it was the cleanest place they had ever worked at but I was in allergic agony from all the dirt.

The only water supply was one little faucet in the bathroom which had a sign that said, "please conserve water." Going to a nursing home means never taking a shower or bath again for the rest of your life. The nurses came in and asked the lady next to me if she wanted a shower. I thought they were going to take her into a special shower room.

But, to my horror, there were about 7 staff members standing around her bed holding mattress pads and the sound of rags being rung out in a dirty bucket of water. In other words, a shower consists of getting your bum cleaned off, then the rest of your body gets washed with the water they used to rinse off the rags.

Another thing I learned. The caregivers evaluate patients on whether they have a good attitude or a bad attitude. Those with a good attitude get care, those with a bad attitude don't. Since I had no intention of staying more than 24 hours, I just had a bad attitude. The woman next to me was very calculating in that she kept telling everyone what a wonderful life it is. I saw her get up after her shower and she looked like things were anything but wonderful.

This is an issue that NMSS has addressed but no solution has come. They talk about how people with MS have intellectual needs that nursing homes don't provide. I'd like to design a special place for people with MS. It could be like a campus. Maybe I should start a fundraising effort and build a place for us. I'd like to know from others what would be the ideal place.

[Jules A]

This topic is so central for most of us. I cannot/will not subject my family members to the life destroying task of caring for me with advanced MS.

As I wrote in last summer, I went to a "rehab"center for 24 hours. I have asthma and allergies and I found the environment to be insurviveable. The staff was very friendly and upbeat but I told them one thing: "GET ME OUT OF HERE". I couldn't breathe because the air quality was so bad. The nurses told me it was the cleanest place they had ever worked at but I was in allergic agony from all the dirt.

The only water supply was one little faucet in the bathroom which had a sign that said, "please conserve water." Going to a nursing home means never taking a shower or bath again for the rest of your life. The nurses came in and asked the lady next to me if she wanted a shower. I thought they were going to take her into a special shower room.

But, to my horror, there were about 7 staff members standing around her bed holding mattress pads and the sound of rags being rung out in a dirty bucket of water. In other words, a shower consists of getting your bum cleaned off, then the rest of your body gets washed with the water they used to rinse off the rags.

Another thing I learned. The caregivers evaluate patients on whether they have a good attitude or a bad attitude. Those with a good attitude get care, those with a bad attitude don't. Since I had no intention of staying more than 24 hours, I just had a bad attitude. The woman next to me was very calculating in that she kept telling everyone what a wonderful life it is. I saw her get up after her shower and she looked like things were anything but wonderful.

This is an issue that NMSS has addressed but no solution has come. They talk about how people with MS have intellectual needs that nursing homes don't provide. I'd like to design a special place for people with MS. It could be like a campus. Maybe I should start a fundraising effort and build a place for us. I'd like to know from others what would be the ideal place.

I'm glad you at least felt the staff was "very friendly and upbeat" and would agree that those who have a good attitude are largely treated better because they are pleasant to be around. That seems to be a universal life thing though not just health care.

And yup bed baths suck although they were likely starting with the cleaner areas and hitting the bum last.

I totally agree with you and plan to spare my family aldo. Have you been looking around for a nursing home that would better suit you for when the time comes?

[Tawanda]

This is an issue that NMSS has addressed but no solution has come. They talk about how people with MS have intellectual needs that nursing homes don't provide. I'd like to design a special place for people with MS. It could be like a campus. Maybe I should start a fundraising effort and build a place for us. I'd like to know from others what would be the ideal place.

I like your vision, palmtree!

I debated posting this thread for 2 days before I decided I thought it time to address this pink elephant of an issue. It seems we fear nursing homes more than death.

[Jules A]

I like your vision, palmtree!

I debated posting this thread for 2 days before I decided I thought it time to address this pink elephant of an issue. It seems we fear nursing homes more than death. We discuss suicide here quite regularly while the alternative of living out our days in a nursing home is seldom discussed.

Thank you for having the moxie to start this thought provoking thread. Its a shame that so often the fluffy stuff is embraced here at MSWorld while the more practical topics are either rebuffed as being pessimistic or are ignored.

This is the only place I can truly vent my fears and discuss strategies for my unpredictable future thanks to this miserable disease so being able to share proactive plans and explore others' experiences is valuable to me.

[palmtree]

My dream of a place for people with MS would be around nature, in the woods with a swimming pool and jacuzzi in a cool climate. It would have a cabin for family to come stay on the weekend. It would have a health center with a neuro and an IV nurse. It would have a place to garden and tend to animals. It would have iPads for everyone.

It would qualify for Medicaid funding but not be dependent on it. Biogen and Google and charity could cover the the rest.

Never hurts to dream. What would your dream be?

[Tawanda]

Thank you for having the moxie to start this thought provoking thread. Its a shame that so often the fluffy stuff is embraced here at MSWorld while the more practical topics are either rebuffed as being pessimistic or are ignored.

This is the only place I can truly vent my fears and discuss strategies for my unpredictable future thanks to this miserable disease so being able to share proactive plans and explore others' experiences is valuable to me.

Thank you, Jules

I do not want to bum anyone out, just start a healthy discussion. Are nursing homes as bad as everyone says or are they a viable alternative to piece-meal care my mother in law got when she had cancer? Between us flunky family members, her medic alert necklace and State medical aids who would cancel in a seconds notice (if they even called us) it was a mess. Luckily she went rather quickly. 24-7 coverage is not an easy situation for any family. We were already suffering from care-giver burnout and this was relatively a drop in the bucket time-wise. Late stage MS can go on a lot longer.

[Tawanda]

My dream of a place for people with MS would be around nature, in the woods with a swimming pool and jacuzzi in a cool climate. It would have a cabin for family to come stay on the weekend. It would have a health center with a neuro and an IV nurse. It would have a place to garden and tend to animals. It would have iPads for everyone.

It would qualify for Medicaid funding but not be dependent on it. Biogen and Google and charity could cover the the rest.

Never hurts to dream. What would your dream be?

All of the above plus some kitty cats!

[fishead]

aMEN, palmtree!! Your description of an MS-Nursing home is exactly what we all dream of

[poppydarling]

This is a great post, Tawanda.

Palmtree, I posted on another thread a while back about my idea for an intentional community of tiny houses built around MS and I'm not giving up on that dream!

I will ask the moderators if we could have a new topic category for this subject (as well as nursing homes/alternative housing), where we can post links to sites and other useful information during the research process. I've been collecting links for a while and can post them to start our discussion.

Let's do it! From my research, you may only need five or six people to start the community, depending on where you buy the land. Tiny houses are cheap to buy outright, many feature universal design, and they're cheap to heat/cool and easy to clean. Link them together and add amenities and you've got a fantastic supportive (yet still independent) community!

[palmtree]

Oh Poppy,

I love you! Your vision is exactly like mine. I really believe this is possible.

I'm in. Let's go for it!

[palmtree]

BTW Tawanda, Kitty cats too.