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KatBee

Member
Joined
Dec 4, 2015
Messages
19
Reason
Lost a loved one
Diagnosis
10/2013
Country
CA
State
Ontario
City
Ottawa
Hi folks,

I've read some of your posts, but this is my first time posting.

I'm currently caring for my mom, who has ALS. Feeling a bit lonely and isolated, so I'm reaching out online...

About mom:
She was diagnosed just over two years ago. She just turned 64 last week. She has limb-onset. She can still get from the bed to her electric wheelchair using a walker, one hand is no use and the other hand is getting weaker. Speech and swallowing are generally fine. She decided immediately after diagnosis to pursue an 'early exit' strategy and has maintained that aim through the two years with the disease. Her health care team is supportive of her choice to stop eating and drinking some time in the near future. Mom's plan was to stop eating and drinking at the end of October, but she decided to delay it to finish some projects. At her request, we had a goodbye party for her that she only wanted to invite a few friends to, but she hasn't wanted to see anyone since that.

About me:
I am 26 and an only child of divorced parents (aka my mom's only family caregiver). When my mom was diagnosed I was living with my fiancé (now husband) in British Columbia, which is on the other side of the country from Ontario, where my mom lives. I have come to Ontario a number of times, sometimes for months, over the past two years to help mom, although I continued living in BC. This time I arrived early October and plan to stay here as long as I need to. I am living at my dad's house, which is not far from my mom's (bachelor) apartment. For the first month I stayed at mom's from 9am-9pm, but now I do 9am-2pm and 7:30-9:30pm every day (I'll increase it again as needed). My husband is in BC, covering the rent on our apartment and getting his grad degree.

There is a lot more to our story ... her insistence that I not 'derail' my life because of her illness, a wedding, a few trips together (within Canada), her social isolation before the diagnosis, all the time getting basic supports in place... but the main points are there.

Among other things, I'm wondering: what do you do to help a PALS enjoy their days...? My mom is bored and lonely and I'm tired and confused.
 
Glad you asked, KatBee. Lots of people struggle with this question. I expect you'll get several different kinds of answers.

I think a couple of things are set in stone: First, you're the child, forever, and she's the parent. Second, she's a full-grown adult who can chose to live (and die) as she wishes. Third, I believe that a person with ALS can have anything they want, and we should support them to get it.

You said that YOU want her to enjoy her days. And SHE wants that you not derail your life. Those could be two different things in conflict, at least in her mind.

Your mom might agree with me that the job of a parent is to raise a good child who will succeed on their own. She might not want your attention. She might want you to go back to your husband and live your life, while she accepts her fate, happy in the knowledge that she succeeded as a parent.

How do you help a PALS enjoy their days? By giving them what they want. Which might mean NOT getting what you want.
 
Hi Atsugi,

Thanks for replying!

I absolutely agree -- my own first priority has been to do just as mom wishes all along. I absolutely support her end of life decisions, and even her wishes for me to continue living in BC up to now -- which has been a gift although it has also been hard. She really was planning to stop eating and drinking completely in October, and our plan (her and me) was for me (and my husband) to be here to support her through that. We came and helped organize the palliative care and the goodbye party (among other things)... and we supported her when she decided to postpone her exit strategy. My husband has had to go back to BC for the meantime. Mom is working on a review of a friend's book, which I am helping her to get written. She thought it would take a few days, but has taken over a month already and is not done. I know she feels that it is taking too long... but I also think she is afraid of stopping eating... Many days she doesn't have the energy to work on her writing, and then she feels bored and I think she feels like I'm no fun. Sometimes she says "You talk!" but I don't have a lot to say because all I'm doing right now is helping her eat, dress, write, etc... Lost on how to distract her from the frustrations of her illness, and have a good time again...
 
Sorry you're going through this. Truth is, you probably can't distract her from her illness. Once my dad was diagnosed, I don't think he ever enjoyed much again. I saw him smile only a handful of times in a year. I think you are doing all the right things to support her. Be kind to yourself and be there for her :)
 
I agree with everyone. There is such a fine line between what we want to do as caregivers and what the PALS actually want us to do. We want to make sure they enjoy what they can, while they can, but we have no real idea of what is going on within their minds. I often think to myself and have heard our friends say, they think Steve should get out more, have a bucket list and enjoy his life but they do not know how he feels or what thinks. I also think that their energy level makes it very hard to do a lot for very long.

I do know the PALS are suffering inside with the loss of so many things and it is so hard for them to watch their loved ones working so hard to take care of them.

We have to allow them to make their own choices and everyone is different with their choices, their way of dealing with this disease and with their choices for their exit. I also think that plans change as they go along. It is so hard for everyone involved and this is truly a disease that requires you to take one day at a time. You are doing a wonderful job taking care of your mother. Making her happy, might just mean letting her make the decisions and being by her side, realizing that what may be today, may not be tomorrow, with her choices and her health.

It has been so very hard for me the past few months but I have started to realize that Steve is a lot happier when he knows I am ok and am not existing only for this disease. We have to take care of ourselves and by doing that we are taking care of them also.
 
It is a hard question to answer without knowing more about what used to perk her up. Usually, if it was an active pursuit, there might be ways to watch/coach/teach and if creative, still ways to do or partner.

So, any activities, hobbies, interests that she has enjoyed in the past?

You mention she is lonely. Does she ever Skype or Facetime (could be audio only from her side) w/ friends, family, since she doesn't want to see people in the flesh? Does she ever go out [with you, of course] where people don't know her, and just take her chair to the mall,a trail, a museum, or wherever she might enjoy?

The more info you can provide, the better we can help. It sounds like she may be struggling with the extent to which she wants to live life, if at all, and if so, on what terms. But thank you, Kat, for taking this on.

Best,
Laurie
 
Welcome and this might sound odd, but I've known it to help and we were going to do this but my husband was such rapid progression we didn't. Would she enjoy a fish tank? It doesn't have to be an extravagant one, but many people with many illnesses find that there is something soothing and mesmerising about watching fish.

Even if she is feeling tired, if you can put the tank somewhere that she is frequently near, she can even just rest and watch them.

I know it is hard - my Chris was such rapid progression there was no bucket list and he withdrew so much yet would tell me a times that he was bored. It isn't an easy thing. I tried reading books to him (I'm an avid reader and had never read a lot) but he would fall asleep within a page or two.
 
It sounds like a goal is what is keeping your mom going. Projects are also what make my husband happy, even if he can only plan and supervise. I wonder if your mom is changing her mind about her exit strategy, but struggling with her commitment to get you back to your life and husband.

I so understand your exhaustion. How about looking at this another way. Is there anything you'd like to do, any place you'd like to see (Laurie mentioned museums) that she would enjoy doing or seeing with you? Both your energy levels will effect this, but once you get out you might find a change of pace energizes you, and her seeing you interested might please her.

BTW, welcome--I'm glad you've decided to chime in. This can be a very lonely journey, even when surrounded by people who don't understand it. This group is full of beautiful souls who will hold your hand and keep you company.

Becky
 
Hi everyone,

Thank you so much for writing to me <3 It is so helpful to be able to share my questions with you. Knowing that you are listening and offering ideas is helping me to find the time and energy to keeping thinking about these questions...

Sorry I don't know your names yet!

Starente, I'm so sorry to hear how tough it's been for your dad, and your family. That must be a hard observation to share, and I really appreciate that you could do so. It's so hard to admit that sometimes nothing we can do can make our loved ones happy... Thank you for helping me feel less alone in this.

Scaredwife, it's so true that it's hard to realize that things can be better when we don't just exist for the disease... I struggled with this while I was living far from my mom (a book by a woman with ALS helped me see mom's perspective on this (Cartwheels by Amy Doolittle))... but now that I'm staying in Ottawa, not working, not studying, I'm struggling with from a different angle. It's also very true about the energy level. One afternoon's outing might mean a week's resting... and sometimes that trade isn't worth it. It's not like it is in the movies, is it? When people play that game -- what would you do if you only had a year to live -- they don't usually add '...but lost the use of your arms and legs and also ...' It's so hard to let go of those romantic ideas about last days...

Laurie, thank you for giving me a space to think over this --! I have been, but just haphazardly. So here, just for me, in no particular order, is my list of things my mom has liked doing:
  • Swimming (but in lakes)
  • Getting in a sauna
  • Cooking
  • Singing
  • Sewing
  • Drawing, painting
  • Making collages
  • Writing poems, stories
  • Being out in nature, trees, rocks
  • Watching birds
  • Gardening
  • Picking blueberries
  • Playing with little kids
  • Reading murder mysteries
  • Having a fish fry
  • Social-political organizing and advocacy
  • Taking care of others
  • I'm going to keep adding to this list ... ! The next step is to think about how to adapt these things to the current limitations...

Whether she wants to be social is a point of confusion for me. She really enjoyed having people over for her 'goodbye party' but has refused to see anyone since then. I think she feels like she's letting people down in some way... :'( even though I have tried to reassure her... I think I didn't express this as well as I wanted to... something to go back to... But beyond that she doesn't have many friends and most are pretty unreliable (as I think many of you have also found) and this makes her feel hurt and resentful. So she's given up on them, for the most part.

Before we got the green light from mom's health care team for her to stop eating when she wished with their support (psych assessment, etc), she was really upset by all the delays. She consistently said she wanted to go as soon as possible, did not want to get even as far as she has in the disease progression. After the green light, the party, and a few days without eating, she finally had a chance to look at her (short) list of things she'd been trying to get done since January, including this review of her friend's book (her main project). She continues to say 'this is going on too long', 'I never wanted to get to this point', and now also 'why am I doing this [review]' but at the same time she can't stand the idea of not finishing it. Many days she's too tired to work on it, or we have logistical things to do (from a bath to rearranging the room), or she just can't think clearly. It can take her a long time to wake up in the morning, she isn't very alert but wants something to keep her mind occupied – this is definitely an area where I need to come up with some ideas. Also, when she is eating, since she can't talk and eat. These are often the times when she says 'you talk!' and I have nothing to say... We listen to a lot of music at the moment, but she gets bored of that. Thus the list of things to look into:
  • Audiobooks?
  • Radio programs we like that I can get online?
  • ... yup, I'm feeling really uncreative in this area right now... will keep thinking...

Tillie, I really like the idea of the fish tank. I've been tentatively thinking about birds or fish... or even borrowing someone's cat... Mom and I read 'Being Mortal' by Atul Gawande and he described a nursing home (in the States) that had something like 2 dogs, 4 cats, 100 birds and also some rabbits living with the residents – and she liked that idea. At one point she suggested maybe getting a little finch... my main concern (and I have a few) is what I would do with the bird or fish after -- ! I think I would have to find someone who would let me buy them a bird or fish, but let me keep it for the first while... :S I'll also admit that I'm terrified the fish might die. I pass a pet store every day walking between my parents' places – but thank you for helping me bring that idea into the front of my mind.

Becky, you are definitely right that mom's project is keeping her going. She's writing this review of her friend's book, but it gets all tangled up in stories from her life and the work they did together. Sometimes I wish I could say 'just write the stories and forget reviewing the book!' because that's the part that matters to me, but know the review is important to her and so I try to let her focus on that, since it's hard enough to focus already. She wants to finish this because she happened to be working on it as her health declined, but it's not exactly what she would have chosen for a last writing project, I don't think, if she'd really thought about it... She has always talked about writing a book of short stories about her home town, for example... I can't tell you how sad I am that this will never happen. I think I'm too sad to even talk about it. Thank you for giving me the opportunity to think about things I'd like to do with my mom, too! Here goes the list...
  • Audio-record more of her stories about family, her life
  • Make a list of writers/books that are important to her and why
  • Continue our playlist of songs that are important to her
  • Be able to tell her I've been accepted to medical school, or at least invited to an interview (invitations go out mid-January, interviews are Jan-April, and of course I only have a small chance of getting in this year, so it's a pipe dream)
  • Make sure she knows that I give her credit for basically all of my good qualities and values
  • Watch my wedding video with mom and my husband
  • Sing songs with friends – some of hers or mine?
  • Maybe do some crafts, like cutting out pictures from magazines that we like to put up...?
  • Play the 'favourite things' game: I made up this 'game' that consists of listing your top ten favourite things in a given category (it can be serious, like 'top 10 favourite days in you life' or shallow, like 'top 10 favourite stores') [I really like making lists, I guess...?]
  • To be continued...

An update: folks, I felt so much more positive after working on this post this afternoon that I went to mom's with a much better attitude. I bought her a treat at the grocery store on my way (After 8 chocolates, that we used to get at Christmas), which she wasn't able to eat because she wasn't feeling well, but it made her happy to see them. When she got into bed I turned the lights out, lit some candles, and lit some sweetgrass. It felt nice to make a bit of a nicer atmosphere for her to rest in, and she liked the smell of the sweetgrass.

I really can't thank you enough. Sorry this post is so long :?
 
Your night sounds wonderful. Your mother means a lot to you and you are doing a great job. These moments will turn into some wonderful memories for you and it is giving her peace. There are so many things you can do together at home. You can read a book to her and yourself, play her favorite music, play games, have a pedicure night, watch a classic movie. The list goes on and what is important id that she is happy like she was today.
 
Kat,
I agree that her change of heart about ending it all in Oct. may have her confused about her own next chapter. That's why I suggested taking her out, just the two of you, to somewhere where you won't know others.

A lot of her hobbies seem fun -- are there any you'd like to learn? That you could take her to a shop/garden/etc. and she could help you pick out supplies, projects, coach you?

What about just spending some time on a lake shore with a picnic and doing a collage or writing a poem together (or whatever)? You could be her scribe. Maybe some time you could bring a kid along.

Some of the stuff we did in time at home: TV and movies on the iPad, audiobooks too, "guess the artist" while playing music, stuff like that. And watching some of the political punditry shows and making bets on who was going to say what.

You say she wanted to write a book. Why can't she? She has her voice, and there's Dragon...this is a real window.

Of course, this all requires her buy-in. So to get things started, I'd be straight up with the old cliché "get busy living or get busy dying" and ask her which she prefers. Tell her you know her time is limited in any case, and you'd like to spend it making memories that will help you when she's gone. She may need time to process, as she is doing, but at least you can put it out there. You were prepared for the end a couple of months ago, so you can meet whatever comes.
 
What a beautiful turn around in thinking!

Don't just buy one fish hey, buy a few, more interesting to watch. I'm sure you could find someone who would take fish easier than a bird. Finches are nice but they can be noisy and a bit messier, I liked the idea of fish, and a light behind at night can make a beautiful thing to watch.

The rest of your list is great, don't try it all at once, but start on something and even if it doesn't go as well as you hoped you have more things to try.

I love the picture of your candles and sweetgrass. These little things can turn into huge things if they give her just a little happiness and a lovely atmosphere. It will help you as well. I love candles, and always find they bring such a feeling of peace.
 
Kat, your mom sounds like a very interesting person! What a wonderful thread to read this morning...thank you for sharing your thoughts. i suspect that just spending time with you is precious to her, so whatever you do, make sure you are happy, too. That will make all the difference to her. What a brilliant family!
 
Heart-warming update of the day:

I went to the local pet store to ask what I would need to set up a small aquarium, and I briefly explained why I needed it -- and so the woman working at the store went into the office and brought out a little aquarium. Apparently when people up-grade their tanks, move, etc, they often bring in the old tank and the pet store gives them out to families in tough times or who can't afford them. So I now have a little tank, gravel, fake plants, net, and even a little side tank to keep the fish in while cleaning the main tank. Once I get it set up I can go in and just get a fish and food (!). By the way, the woman recommended getting a Beta fish, which she said are happier on their own (they fight in groups). She said if I can't find someone to take the fish later, I can always bring it back to them and they will re-house it (they wouldn't sell it, they would give it away like this tank).

I'll let you know how it goes!

Special thanks to Tillie -- and also to everyone for getting me thinking about nice things again <3 <3
 
Oh wow, isn't that just the most beautiful thing to hear of!

All problems solved including what to do afterwards.

I hope it helps to fill some of her hours with a soothing and enjoyable time :)
 
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