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ramonachristine

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Oct 8, 2011
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Reason
CALS
Country
CA
State
bc
City
duncan
Hi, long story short.....my brother is home. He was (is) the only ALS person still mobile fully vented and with feeding tube. So we got to take him home after his trache surgery. His energy, after 9 mmonths, has bottomed out. He can still get in and out of bed and use his walker but after only one or two of these events a day, he is wiped out.

He can use his dynawriter to communicate.

\oh, sorry long story short.

We are near Victoria, BC.

We were told that there was help for his spouse with respite care. Someplace that we could go with my brother overnight or for a day or two so his spouse could get some rest. We have funding from VIHA (CSIL) to help with his care needs.

Now we being told by places that they can't take him, he is too complex.... Yet when we were working on his "stay at home plan", we were told that there were places that he could go for a few days once a month or so.

ANY IDEAS? Any experiences?

Also, we have been a through a few home-care helpers. My brother's spouse does the training with help from PROP. My brother is very kind and not hard to get along with. but we are facing some shortfalls.

His spouse is exhausted.

Any ideas of were we can place help wanted ads?

thanks,
LOVE THE BROTHER!
Ramona
 
If you have an ALS agency there (not sure of how things work in Canada), they might could help. I know ours has funding for a once per year respite care grant. Granted it is for only $1,250 USD, but every little bit helps. You might could check with his dr to see if he qualifies for hospice. I know the hospice we have has a network of volunteers. I have two of them for my sister who are filling in some of the gaps where I don't have private sitters. Also, our local hospital has a list of sitters that they will give out if you need some extra help. Other than that, I have a friend of the family who is unemployed. I am paying him a little bit (which helps him out) and he is helping me out by sitting with her so I can work too. Also, if you belong to a church, you might could ask someone there to see if they could help out for a little. I know I have asked them from time to time and they have come to sit with her and do feedings and call me if something comes up. I have either an aide or a nurse coming in once a day 5 out of the 7 days a week. They help out as well. Just some ideas of how we cope.
 
Ramona, I'm hoping someone from Canada will answer your question. Good luck to your family!
 
Sure hope someone from Vancouver Island, British Columbia reads my post.

thanks to those who did reply.

ALS society here not able to help; local hospice can't help. $$ not the problem because we do have funding for home care. It is just the level of help he needs ; he is fully vented and feeding tube. it is finding more staff who can help in the home.

AND FINDING a place where we can get respite care for the odd weekend.

Thanks,
Ramona
 
Have you contacted ALS Society of BC? Joel Cutler was on a vent and lived on the mainland and did quite well for a few years. He had a web site that was full of information. I'll find it.

AL.
 
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