Home support Vs. Long Term Care Facility

[LeprechaunSean]

So I am over four years into my ALS journey, and I am trying to come up with a long term plan. I currently live in a ground floor suite underneath my sister and brother in law. She has been my main caregiver along with my mother so far, but my condition has deteriorated alot over the past year, and we are now applying for Home support. My sister is thinking of this as a long term solution, but seeing as her husband has just been diagnosed with brain cancer I think she is biting off more than she can chew. How helpful is home support? Should I just start making plans for a long term care facility?

 

[Nikki J]

I am sorry to hear about your brother in law. How difficult for all of you. It does sound like your sister would not be able to care for both of you Hopefully someone with experience of services in your area will be able to tell you what to expect. Do you have any idea how many hours of care you can get?

 

[LeprechaunSean]

Right now it is looking like only four a day. We were thinking that will suffice for now, but down the road..... Doesn't seem like that much

 

[Nikki J]

You will need more later I am afraid but if 4 is enough for now maybe you will have time to explore your options. You do need contingency plans soon though. There are 2 members of this forum Affected and Nuts who tried to care for their PALS husband plus another ill family member neither was able to make it work longterm. But if you can get more hours or if you can pay privately for the coverage you need maybe it could work. Once you are in the system you probably can find out what the max hours are

 

[LeprechaunSean]

Yeah, I am thinking we can make home support work for six months to a year, but based on how much I have deteriorated this year I don't see it going much past that. Would love to hear from some pals that are in full time care facilities, the good and bad.

 

[anderkling]

The ALS Society in BC is very helpful in this regard. The social workers there have a wealth of information to help you with this. Has the team been to see you in Powell River? If not, just call them, if you haven't already. Four hours seems inadequate as time goes on. It might be good to explore hospice care. Many PALS in BC live in hospice for a long time, and receive excellent care. They waive the 6 month limit for PALS. Has the palliative team been in to assess your situation?
- Charlene

 

[LeprechaunSean]

The ALS Society in BC is very helpful in this regard. The social workers there have a wealth of information to help you with this. Has the team been to see you in Powell River? If not, just call them, if you haven't already. Four hours seems inadequate as time goes on. It might be good to explore hospice care. Many PALS in BC live in hospice for a long time, and receive excellent care. They waive the 6 month limit for PALS. Has the palliative team been in to assess your situation?
- Charlene

I go regularly to the ALS clinic, Dr. Cashman is my neurologist. I haven't talked to them about hospice care yet, but I just sent an email to get the ball rolling. One big issue will be if I end up on a ventilator. Apparently that really limits what facilities you can use. Guess I will just have to wait and see what they say.

 

[Green Queen]

Sean I'm so sorry for your family, it's a lot to deal with.
I like to be organised, so hats off to you for thinking ahead.
God bless, Janelle x

 

[LeprechaunSean]

Sean I'm so sorry for your family, it's a lot to deal with.
I like to be organised, so hats off to you for thinking ahead.
God bless, Janelle x

I figure being prepared means lesss stress and man I could use less of that let me tell you...

 

[Green Queen]

Oh man, my heart goes out to you. I'm actually having a few silent tears for you...sorry.
You have so much to deal with...here I am fussing over what colour to paint my study (which will be green for the leprechaun in you and the queen in me...)
A silver lining is your young bloke coming for the holidays.
Take good care Sean...
God bless, Janelle x

 

[LeprechaunSean]

Met with the home support today, getting the ball rolling there...