Thinking of You All

Lkaibel

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Very helpful member
Joined
May 9, 2016
Messages
1,361
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Lost a loved one
Diagnosis
06/2016
Country
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State
MN
City
Minneapolis
My husband, Brian passed from ALS on 3/13/19. On the very day I’d taken off last month to set aside some time to remember him and us, it seemed liked Covid exploded in the news. That weekend, I went to get my car worked on and it hit me that everyone was in gloves and the usual donuts at the shop were gone. Let’s not even rehash the whole supermarket experience.

i cannot even fathom how much harder being a CALS would be with the Pandemic in force. If we’d been locked down with little help available, if any things would have been so much more difficult.

As I was just noting in another thread though, it seems to me now that CALS and PALS have a special strength and tenacity. the situations ALS creates leaves us with little choice but to cope, and so we do. In the cities anyway, the ALSA is a great resource for equipment and helping to resolve issues. Then of course there are the often unexpected friends and family who turn out to be the most helpful. In Covid of course, that part gets more difficult.

Stay safe and as sane as you can. Know that as a CALS or PALS you are never truly alone. This small, international club that no one wants to join but that supports one another so well is her for you.Its definitely been here for me.
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
401
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Thank you all of you for your encouragement and kind words. I'm actually finding that quarantine is more livable with my PALS here with me. If he weren't here I would be completely alone. Frankly, it isn't all that much different from how we were living pre-COVID19. We weren't going out to dinner or traveling. I'm lucky that he is still eating as I am cooking quite a bit and of course painting. We watch movies together at night.

I do have our caregiver coming. I am still working part-time and without her wouldn't be able to do much. She is pregnant with twins (!) so she will be leaving us next month sometime. I'll have to make a decision going forward whether I'll try doing this alone or not.

I appreciate everyone on this forum so much. Can't go to an in-person support group so you all are it! Thank you

V
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,356
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
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AU
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lala land
Finding and choosing carers is never easy, but now even harder. Hope you find a decision that sits well with you V. We are always here for you 💗

🤗 that's a hug for you Lenore, so good to see you
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,600
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
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PA
City
Pittsburgh
V I know I’m late to reply to this however I would not try to do this alone. It only gets harder. I had to do all but a few hours a month alone at the end and that was not good. I pray you can find some one good to help you
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,361
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
I’m late to this as well but I agree with Sue, don’t try it alone. It’s hard and sometimes dispiriting work and you need breaks.
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
401
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Thanks Sue and Lenore. As it turns out, my pregnant caregiver decided to leave us. I think it was becoming physically too difficult for her and she was uncomfortable. She was kind enough to refer us to a person she worked with previously.

The new caregiver started last Monday and has been with us a week. She is a lovely Mexican woman and my PALS is Mexican so they sit and joke around in Spanish. I told him now you can talk about me in Spanish and I won't know everything you are saying (although I can understand a lot!). She is still coming up to speed and there are things that are difficult like using the hoyer lift and getting him in and out of the shower, but she did fine. She is also older than the previous caregiver and exponentially more mature. Our previous caregiver was fine but very into herself; this woman seems far more engaged with my PALS (at least, so far). Time will tell, we all have our strengths and weaknesses.

I'm actually somewhat exhausted from the week as I have been more hands on than usual. He was in a bad mood yesterday as he wanted to see the Thunderbirds flyover so it was a bit of a rush to get him out of the shower, dressed, into his Permobil, into the van, and up the road to a good viewpoint. Luckily we were able to see them and they did a turn right in front of us. When he got home, though, he was irritable about his lunch and tired and a little snappy. It's to be expected. Can't say I'm not snappy at times.

So the new caregiver is a blessing and I'm happy we hired her.

V
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,600
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
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PA
City
Pittsburgh
V I am so very glad you have a new nurse. Just think of your little taste of doing a few things alone or even training and multiply that for doing it alone all the time. You have been blessed with a new caregiver.
 
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