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Stacygol

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Joined
Jan 16, 2019
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Loved one DX
Diagnosis
12/2018
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US
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OK
So sad. Husband diagnosed end of December. He's very used to being in charge and making all the decisions. I am a RN/NP. So I know a bit about caregiving. He fights me on all the ways to do things. Slowly he is beginning to listen to me but it's frustrating. I only seem to cry when someone asks me if I'm okay (not!) Or teading these threads. Already on antidepressant and anti anxiety meds. I have an anxiety disorder. Don't sleep much, we are often up in the night. Need to find some respite care. Suggestions?

While I'm grateful for all the loaner equipment, it's all been pretty dirty. I don't have enough time and energy for cleaning equipment. I always bleach and bag equipment before donating it back. Anyone else noticing this? I worry about infectiousness...being a nurse. Would think the equipment company would have infection control protocol.
 

lgelb

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Sad to welcome you, Stacy. In terms of free respite care, that is most often provided by your ALSA chapter. Have you been in touch about that? Not all chapters have such a program, but some do.

Depending on your income, there may be also programs open to you through your local senior/disability city or county department. It never hurts to ask.

The only equipment we were lent was a power wheelchair and Hoyer lift, and while they may have been dusty when we got them, I don't think they were biohazards, and in fairness, they wouldn't be high risk items in that respect to start with. But FYI, typically the DME that is working with the ALSA or MDA to lend equipment does it on a volunteer or token fee basis, so likely they are putting minimum time into prep.

Best,
Laurie
 

kitkat

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Messages
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Lost a loved one
Diagnosis
11/2015
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MN
A sad welcome to you Stacy. You have come to the right place for support and understanding. You are not alone.
I have found this forum to be a blessing. So much love and understanding.

Our ALS loan pool has been very generous with anything we need for my husband. I have noticed some of the equipment isn't as clean as I would have hoped. Like Laurie says, the DME people may not put in a lot of prep time. You may want to reach out to friends and relatives to help you with cleaning up equipment as it arrives, and other chores around the house. For sure, check out local programs that may offer assistance.

One other thing...our ALSA has support group meetings once a month. The closest to us is an hour away, but well worth the trip. We usually break up into CALS and PALS group, each having a facilitator from ALSA. Check with your ALSA to see if they provide meetings. It's good to get things off your chest without feeling judged, just like this forum.

Hugs,
Kathy
 

KarenNWendyn

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PALS
Diagnosis
07/2017
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US
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OR
Stacy, sorry to have to welcome you here.

I am a PALS. My spouse/ CALS is also a retired RN. I’m a retired MD. I think my spouse and I can relate to the dynamics you and your husband are experiencing.

My spouse and I had a pretty equal relationship before ALS, though there were definitely areas where I made the major decisions.

ALS totally changes the dynamics of a relationship. Suddenly the CALS must make many of the decisions and certainly has to do more and more of the physical tasks. The PALS has to adjust to not having as much power and possibly doing a lot of “back seat driving”, which can come across as nagging.

It’s important to realize that neither of you are responsible for bringing on this disease. The anger and chaos that comes about with ALS is a “gift” from this monster, and really part of the grieving process.

Communication is key, and counseling if needed. You’re obviously both good people who didn’t deserve this. Nobody does. Go easy on yourselves.
 

Thomas933

Active member
Joined
Dec 4, 2018
Messages
89
Reason
CALS
Diagnosis
12/2018
Country
Uni
State
RI
I am a newish cALS myself (husband was dx this past Dec.). My husband and I were pretty ind. before ALS, too. It's been an adjustment. Key is to talk about how you are feeling and to let him talk too. While he is the patient and needs care -- this is happening to both of you just in different ways -- you are both suffering, and I'm so sorry. You both will have different needs as you figure out your new roles. I am constantly surprised that we can react to the same set-back (or whatever) in totally different ways.

Reach out to various non-profits to see if they can help with equipment and, I can't stress this enough, reach out to your government officials for help - local, state and federal to see if they can assist you. Tell them your husband has ALS and ask for help...you may be surprised at what is there or how they may help you. Once people hear ALS, they are usually compassionate and kind and try to do at least something to ease the burden.

Also, the problems that existed between the two of you (if there were any), will still be there. The key is to forgive yourself and to find what works for you, let him know and hope that he shares what he needs and is going through. I've gotten better at living through the suffering moments -- they pass.

You may be able to get some help/counseling on the phone if travelling is an issue but you need to know that you are not alone. Sorry to welcome you.
 

ReginaS

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Joined
Nov 20, 2018
Messages
154
Reason
Lost a loved one
Diagnosis
02/2018
Country
US
State
LL
Sorry to welcome you here, Stacy.
The first 6-8 months were the hardest for me. I cried a lot.
Then it got better. It took a longer time for me.

Yesterday we got a lift and today we got a hospital bed. The remote for the bed was a bit "used". I cleaned it with wipes. We don't quite need it yet but possibly soon. I still need training bc I don't know how to use the lift.

I don't write that much and there are stretches when I cannot read that's how busy we are. Reading in this online forum has been very, very helpful and inspiring. People are so kind here and absolutely helpful.
 

Stacygol

New member
Joined
Jan 16, 2019
Messages
2
Reason
Loved one DX
Diagnosis
12/2018
Country
US
State
OK
Being a nurse has been a huve help. I've used all the equipment before. And I know what to expect. I can certainly help with that. Collecting equipment has been arduous.

I am handy so took door and front glass panel off our shower. Then put down rubber dam. We can now roll in. Cut up a plastic flexible cutting board and taped yo 2 sides of potty chair. Installed bidet. Now water doesn't go everywhere. The urinal with the cup and long tube to bottle has been a godsend. Just figuring things out.

When in nurse mode I'm fine. Just sometimes I think of what I will miss. And worried my body isn't up to this task.
Stacy
 

Atsugi

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Joined
Jan 11, 2011
Messages
5,182
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
Staceygol, you are a real keeper!

As far as arguments are concerned: I have a policy. It is this: The PALS gets whatever they want without any push back from me. Smile, agree, and make the PALS happy.

Just my 2 cents.
 

beauty4everyone

Distinguished member
Joined
Jul 5, 2018
Messages
137
Reason
PALS
Diagnosis
04/2018
Country
US
State
Ville
Atsugi, Your philosophy regarding your PAL's needs is wonderful!! :p I'm passing it along to mine. B. :cool:
 

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