Hello, I joined this group to help my Mom who was recently diagnosed with this terrible disease. However, we have known this for about three years or so, but her second neurologist did not want to confirm this until now. She seems to get worse everyday and her balance is what is mostly the problem so she keeps on falling even with us watching her almost all of the time day/night. I am the one who is in charge of taking care of her with the exception of the help of my husband. She lives with us and we often get up at night to help her as well. So far, we have only 10 hour per week help through an organization where she is charged a co-pay every month. We don't want to put her in a nursing home because we feel at this point it would be worse for her since she has trouble advocating for herself. I have looked into assisted living and she would not be able to afford it because it is very expensive. However, I was thinking of using an assisted living to give us a small respite. Has anyone here put their loved one in an assisted living place for a short stay? If so what was your experience with this arrangement like? Thank you.
Assisted Living? : Hello, I joined this... - PSP Association
Welcome, and same question here, Malattia... I’m in Canada so my experience may or may not be relevent..?
I live in the U.S.
In my country I could book my husband into a designated residential care facility for short stays so I could get a respite break. The rate I had to pay was supplemented by (government funded) Community Health . I never got the chance to use it as he died not long after we qualified, but I certainly would have. Getting a break was critical to keeping him at home, and that's what we both wanted.
My dad's in assisted living up here in Canada, and it is quite expensive. However, before we had to move him, he would stay in a Guest House (on the grounds of the Perley and Rideau Veterans’ Health Centre) for respite care. This allowed mom to go away knowing that he was being taken care of. Technically it was for people with dementias, but he was accepted because of the cognitive aspect of PSP. I know the staff let him stay for respite longer than they would have with other people because they liked him so much and he didn't cause problems (other than falling).
So, yes, in our case respite care was exactly what was needed and helped us enormously.
Thank you Liz and raincitygirl.
In my opinion, the PSP patient can be better cared for at home at a cost similar to that of a residence as long as:
- The house is adapted: bathroom, elimination of carpets, articulated bed, articulated chair, wheelchair, plastic chair for bath, etc.
- There is a caregiver who will manage the disease and the house and administrative and economic matters. The caregiver's dedication will be intense. It is a tough task that requires breaks and vacations.
- People are available to help the caregiver effectively every day.
- Sufficient economy is available to face the situation.
- A source of information is available to provide solutions to the various health problems that the family of PSP diseases will generate. (This chat is excellent for this purpose)
- A good emergency medical service is available.
By private internal mail I send our experiences after 6.5 years fighting with PSP. I hope it helps you make the best decision.
Hugs and luck.
Thank you Luis, I have the e-mail. I also agree that is better to take care of patient at home . However, it is not easy since in the last three years I have not even had one day away from the patient.
Luis, you have a lot of excellent information to share to help others. Again, thank you for sharing.
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