Old 11-20-2018, 12:32 AM #1 (permalink)
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Default Howdy, and Here's My Story

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
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Old 11-20-2018, 02:48 AM #2 (permalink)
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Default Re: Howdy, and Here's My Story

Welcome Katalin, thanks for posting so we know you are here and can try to address things with you.

What a lot you have, but you know a few other CALS here are dealing with other family members health as well, so you are in good company.

If you can care for mum at home, truly it sounds like it will be the best thing. If she is progressing fast, you may need to get that going fast now too.

You probably know that avoiding weight loss and falls are high on my list of musts. Has she decided on a feeding tube and what about bipap? So many things aren't there?
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Old 11-20-2018, 03:14 AM #3 (permalink)
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Default Re: Howdy, and Here's My Story

Welcome, Kathy.

Sounds like you have the right attitude for all this, if there is one...the only thought I would have at the moment, is that you may want to think about options for your MIL and uncle, e.g. what they want, what they can access/afford in terms of home care/facilities, for when you need to spend more time with your mom. Since you say she is progressing quickly, that time may not be that far ahead.

I'm not totally clear on why she's most comfy in bed? For the sake of skin, circulation, bowel/bladder function, etc. if she can get into a lift chair or wheelchair, use a shower chair, etc., it is a good thing. The OT should be able to suggest additional postural support if needed.

Best,
Laurie
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Old 11-20-2018, 09:07 AM #4 (permalink)
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Default Re: Howdy, and Here's My Story

Welcome Kathy,

It sounds like you are trying to be on top of things. My only concern is her being in a different apt from you. I know she wants her independence, but I’m afraid that is not going to last very long from what you describe.

Laurie is correct in trying to get your MIL and uncle into a good place. My Mom and Dad are now in a care facility, unfortunately not together as my dad had dementia and needs the memory are unit. However, it gives me peace knowing they are being looked after when I cannot be there, which is most of the time.

My husband Brian is on a vent and has been for over 8 years. I am his primary caregiver and have very little relief. I can only get to my folks once a week to check on them and cannot leave in an emergency. That has to fall on my Brother and SIL. I tell you this, just so you realize where you can get stuck.

Wishing you the very best and look forward to updates from you.

Hugs
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Old 11-20-2018, 10:11 AM #5 (permalink)
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Default Re: Howdy, and Here's My Story

Thanks, Tillie for responding.

You probably know that avoiding weight loss and falls are high on my list of musts. Has she decided on a feeding tube and what about bipap? So many things aren't there?


So many things indeed. No one seems to be able to tell us how to weigh her. Yesterday one of the OTs told us about a gizmo she'd seen which attached to a Hoyer, and which weighs the PAL while in a sling. Where this magic gizmo is, I have no idea. At this point, we're just eye-balling her. I don't think she's losing too much weight, but I don't see a solution to that right now. Maybe the Sunnybrook clinic can help with that, though no one has offered that there yet (2 visits to date).

She initially wanted no feeding tube, but now is interested, but refuses to get on the waiting list. She's understandably depressed: I think she's struggling with reality of a lot of suffering coming her way. I know she's thinking she doesn't want to prolong it. We're in a really shifting emotional landscape. I have to really pace my advice to her (get on waiting list if she's even *thinking* of getting tube; sit up occasionally in the tilt chair; go outside into some fresh air; get a hair cut). Have to plant the seed, and only *sometimes* water it...She'll dig in if we try to push anything. Headstrong woman. I feel like she'll suffer because of it. BIG deal yesterday getting her to let me Hoyer her for two of her three transfers.

And falls, short of someone dropping her, shouldn't happen. I think she's starting to realize those slide board transfers are close to dangerous.

Cheers,

Kathy
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Old 11-20-2018, 10:28 AM #6 (permalink)
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Default Re: Howdy, and Here's My Story

Thanks, Laurie.

I think she's in bed most of the time partly as a kind of depression, but also she's profoundly tired, and not as comfie in the tilt chair. I'm hoping to get her beloved lift chair into the new apartment, and I will be able to entice her into it. Yes, I'm worried about pressure. I'm often there to see the brief changes, and occasionally do them myself, and her skin is quite clear, with no redness or bruising. Yesterday I was able to get her onto the commode for her afternoon whizz. She was thrilled. Hoping I can get her OUT of those briefs for longer periods of time during the day. I'll be able to respond in a way that the attendants couldn't.

Thanks for idea to ask OT for postural support. I'm going to do that TODAY. Just last week she wound up car sick on the trip to/from the doctor. We figure it was partly the crazy cab driving, but also that she had kind of crumpled forward a bit, putting pressure on her abdomen. Tilt chair is too long to tilt backwards in the WC cab. I thought, gee I'd like to have a strap across her chest!

As for forward planning with the other elders who need our support: I think we're going to divide and conquer. My husband who is still working, will look after his folks, and I'll take primary responsibility for mine. He'll give my some help when I need it, and I'll give him help when he needs it. So for instance, the uncle with memory troubles started to need regular food deliveries, so I can do that with the internet. I think we can't force any of them to do anything, and we'll just have to be prepared to act when crisis arises. I can't make them eat, I can't make them move. They're riding their individual waves onto the shore. They don't want our interference just our support. We can only suggest a few times and then let it rest, and gently suggest again. We're working behind the scenes with the uncle'd doctor to have him do "surprise" home visits, and getting our provincial services CCAC involved. I'll be taking that CCAC meeting with him on Thursdays. Last week, our first "emergency" we had with him was that he'd run out of hamburgers, and could I drive an hour there to get him some more? UBER Eats car delivery service to the rescue!

Cheers,
Kathy
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Old 11-20-2018, 10:47 AM #7 (permalink)
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Default Re: Howdy, and Here's My Story

Hi Sue, Queen of Everything (love it!!)

Thanks for kind wishes.

It sounds like you are trying to be on top of things. My only concern is her being in a different apt from you. I know she wants her independence, but I’m afraid that is not going to last very long from what you describe.
I think we're giving her the "idea" of independence. I really think I'll be spending most of my time with her, and I'm ready for that, and so is my husband. At this point, she's going from 8PM to 9AM with no one with her. That will change I know. I figure my life will not be my own for a few years. She says now she won't want a trach, and she's refusing bipap at this time, though she doesn't need it yet. She's also refusing any kind of technology. I show her the iPad (fun stuff), and she's just not interested in it. She's a great talker and story-teller. It's going to be hard to watch her lose that and I know she'll not want to live like that. She's also 87, such an advanced age for this disease. She often says she hopes she won't suffer long. We try to find the joy where we can, but it's pretty tough to see it.

My Mom and Dad are now in a care facility, unfortunately not together as my dad had dementia and needs the memory are unit. However, it gives me peace knowing they are being looked after when I cannot be there, which is most of the time.

I can imagine the peace of knowing your parents are well looked after. I'm sure they understand, but it's still got to be really hard to not be there. I'm glad your brother and SIL can visit more and look after them. You wonder what you'd do if you didn't have family. We have no kids in our family: I sometimes wonder how my husband and I will manage when our time comes. Hopefully we'll have learned enough to be able to deal with some of it on our own, and I know I'll be the first to sign up for help where I can get it. Bring on the housekeeping service!!

My husband Brian is on a vent and has been for over 8 years. I am his primary caregiver and have very little relief.
Sue, my heart goes out to you. Such a challenge, and yet it must be good to have him so long. I'm amazed, reading what you caregivers are doing, negotiating all the practicalities, AND the personal care for your loved ones. When I look at this illness, the trach and loss of speech is what seems most frightening. And I know it's coming for us too. It's such a bloody heartless disease.

Thanks for your support.

Sending you a big hug back.

Kathy
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Old 11-21-2018, 01:06 AM #8 (permalink)
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Default Re: Howdy, and Here's My Story

As for chest support in the wheelchair, whether traveling or not, you might look at something called the Monoflex (disclaimer: used to work for the mfr). Permobil distributes it in Canada and your supplier can order it. She would probably be most comfortable in the one-piece version. If the need is infrequent, the Universal Elastic Strap, that is not mounted to the chair but winds around it/her, is another option. Both come in multiple sizes.
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Old 11-21-2018, 04:26 PM #9 (permalink)
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Default Re: Howdy, and Here's My Story

Thanks Laurie, will do...The ALS closet has a zipped version, so we'll start with that. She's a bit skittish about ANYthing new...Maybe best to introduce her to the final thing, if she is losing trunk strength.
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Old 11-26-2018, 10:50 AM #10 (permalink)
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Default Re: Howdy, and Here's My Story

Hi Katalin,

Thank you for the descriptions. I read them all and am learning many things. Also thank yous for your response to my introduction. I am still learning how this whole system works and how to post etc.

Much luck, energy and strength to you. Hope to hear from you often .

Ina
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Old 11-26-2018, 08:38 PM #11 (permalink)
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Default Re: Howdy, and Here's My Story

Thanks, Ina! wishing you strength too, I think we're going to need it!
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