Katalin
Distinguished member
- Joined
- Sep 22, 2018
- Messages
- 114
- Reason
- Lost a loved one
- Diagnosis
- 05/2018
- Country
- CA
- State
- Ontario
- City
- Toronto
Hello all, I've been combing the forums for a month or so, mostly because I'm not sure how to manoeuvre around here. I've been learning a LOT from forum, so many helpful people, and especially I've been feeling like I'm getting to know some of you, if not by actual name, then by user name. Generous people! Great tips! Great info and learning!
First: I know some of you good PALs will not be able to read all the way through this...posting more to CALs. Long post--sorry. Promise to be less long-winded in the future.
My mother was diagnosed in March at the age of 87. You say this is a disease of falling, not failing? She lived independently up till a year and a half ago, gardening, driving, enjoying her little house in a little town. We started to notice the occasional bruise on her face, scraped hands, getting stuck in the garden after toppling over, falling in the driveway, or going up steps. We thought it was just balance issues. She told us recently that she had fallen so many times she lost count after 20 falls. She was diagnosed with a drop foot, had an EMG which was inconclusive, and got fitted with an AFO, and had some ineffectual physio.
She decided to move out of her house (I still recall the last time she walked up the stairs from the basement---scared the pants off me, hauling herself up by her arms, sad day) and into the city, into a retirement home, to be closer to her two daughters. My other city sister is having health issues herself, so my Mom's care is falling to me, mostly.
Thankfully my work became so odious (thank-you bad boss!) that I had to quit, just at the time Mom needed more help. That worked out well.
A year after moving into her retirement home, she had a few terrible falls transferring in the bathroom, and luckily I was there for both of them. Into the hospital....no real injuries, but with a sore foot, she was confined to bed, non-weight bearing. Three weeks in, and the good folks at Western diagnosed MND/ ALS. Eventually she went into Rehab hospital, with the intention to rehab her to her best abilities, post de-conditioning in hospital. I think perhaps they over-did it, but I know my Mom wanted to see what she could do. She managed to do a bit more walking, but in hindsight, I know she probably hastened her decline by over-doing it. No blame to the physios. The great thing that came out of rehab was a social worker who got Mom into a 6 month transitional programme for disabled people who want to live independently, in an apartment building, essentially, with a group of PSWs who roam around this facility, providing scheduled personal support to recently disabled people. Who knew??
She's bed-bound now, most comfie in bed, yet still wants to be independent, so we've rented a studio apartment in my building. She'll be on the fifth floor, I'm on the 17th. The move is happening in three weeks. And I know I'll eventually be spending most of my time with her, nights included.
The attendant services programme promises 5 separate hours per day, breakfast, lunch, mid-afternoon, dinner, and bedtime. They'll prepare food, do toileting, brief changes, ROM exercises. CCAC promises physio training to these attendants, physio for her, OT, nursing care when it comes to it. And the wonderful ALS Society and general manager are supporting with advice and equipment. Meals on Wheels dinners, and another sister is doing homemade soups for lunches. I'll fill in where needed.
I'm also dealing with a dear mother in law an hour's drive away, also in her mid eighties, and we just inherited an 80+ year old uncle, estranged from the family, who has serious memory problems, and now my husband and I are looking after him, also an hour away.
Sometimes I'm feeling pretty frazzled. I'm coping by doing one thing at a time, and doing lots of lists and always trying to simplifying. learning to plan ahead, from all these posts. OT taught me how to use the Hoyer (yaya!) Contractor is coming next week, to get the bathroom accessible, and to fix a couple of thresholds. We've got the portable Hoyer, and everything we need. Moving in in mid December.
Mom is definitely progressing FAST these days. Speech more and more slurred, more coughing, more weakness, tiredness. Her sliding board transfers are getting sketchier and sketchier, getting her to consider Hoyer more often. She feels like the transfers are the only activity she has, and doesn't want to give them up. Feels like it was a lot of downward plateaus, months apart. Now it feels like a slow slide down a slippery slope.
These weeks seem a lot like the calm before the storm, and either it's genius to have her in the apartment building, or the most idiotic idea we could have cooked up. She's on the wait list for some good long term care facilities, but after touring 15 in the city, I can't countenance most of them. This forum has given me the courage to realize she can be looked after better, at home.
I may need to post some practical questions going forward, but I'm mostly just glad to be able to meet some of you on the internet.
Wish you all well. Chime in if you have any thoughts, with thanks.
Cheers,
Kathy
First: I know some of you good PALs will not be able to read all the way through this...posting more to CALs. Long post--sorry. Promise to be less long-winded in the future.
My mother was diagnosed in March at the age of 87. You say this is a disease of falling, not failing? She lived independently up till a year and a half ago, gardening, driving, enjoying her little house in a little town. We started to notice the occasional bruise on her face, scraped hands, getting stuck in the garden after toppling over, falling in the driveway, or going up steps. We thought it was just balance issues. She told us recently that she had fallen so many times she lost count after 20 falls. She was diagnosed with a drop foot, had an EMG which was inconclusive, and got fitted with an AFO, and had some ineffectual physio.
She decided to move out of her house (I still recall the last time she walked up the stairs from the basement---scared the pants off me, hauling herself up by her arms, sad day) and into the city, into a retirement home, to be closer to her two daughters. My other city sister is having health issues herself, so my Mom's care is falling to me, mostly.
Thankfully my work became so odious (thank-you bad boss!) that I had to quit, just at the time Mom needed more help. That worked out well.
A year after moving into her retirement home, she had a few terrible falls transferring in the bathroom, and luckily I was there for both of them. Into the hospital....no real injuries, but with a sore foot, she was confined to bed, non-weight bearing. Three weeks in, and the good folks at Western diagnosed MND/ ALS. Eventually she went into Rehab hospital, with the intention to rehab her to her best abilities, post de-conditioning in hospital. I think perhaps they over-did it, but I know my Mom wanted to see what she could do. She managed to do a bit more walking, but in hindsight, I know she probably hastened her decline by over-doing it. No blame to the physios. The great thing that came out of rehab was a social worker who got Mom into a 6 month transitional programme for disabled people who want to live independently, in an apartment building, essentially, with a group of PSWs who roam around this facility, providing scheduled personal support to recently disabled people. Who knew??
She's bed-bound now, most comfie in bed, yet still wants to be independent, so we've rented a studio apartment in my building. She'll be on the fifth floor, I'm on the 17th. The move is happening in three weeks. And I know I'll eventually be spending most of my time with her, nights included.
The attendant services programme promises 5 separate hours per day, breakfast, lunch, mid-afternoon, dinner, and bedtime. They'll prepare food, do toileting, brief changes, ROM exercises. CCAC promises physio training to these attendants, physio for her, OT, nursing care when it comes to it. And the wonderful ALS Society and general manager are supporting with advice and equipment. Meals on Wheels dinners, and another sister is doing homemade soups for lunches. I'll fill in where needed.
I'm also dealing with a dear mother in law an hour's drive away, also in her mid eighties, and we just inherited an 80+ year old uncle, estranged from the family, who has serious memory problems, and now my husband and I are looking after him, also an hour away.
Sometimes I'm feeling pretty frazzled. I'm coping by doing one thing at a time, and doing lots of lists and always trying to simplifying. learning to plan ahead, from all these posts. OT taught me how to use the Hoyer (yaya!) Contractor is coming next week, to get the bathroom accessible, and to fix a couple of thresholds. We've got the portable Hoyer, and everything we need. Moving in in mid December.
Mom is definitely progressing FAST these days. Speech more and more slurred, more coughing, more weakness, tiredness. Her sliding board transfers are getting sketchier and sketchier, getting her to consider Hoyer more often. She feels like the transfers are the only activity she has, and doesn't want to give them up. Feels like it was a lot of downward plateaus, months apart. Now it feels like a slow slide down a slippery slope.
These weeks seem a lot like the calm before the storm, and either it's genius to have her in the apartment building, or the most idiotic idea we could have cooked up. She's on the wait list for some good long term care facilities, but after touring 15 in the city, I can't countenance most of them. This forum has given me the courage to realize she can be looked after better, at home.
I may need to post some practical questions going forward, but I'm mostly just glad to be able to meet some of you on the internet.
Wish you all well. Chime in if you have any thoughts, with thanks.
Cheers,
Kathy