Update 18 months post ALS diagnosis - question re "too harsh"?.

Janders

Member
Joined
Mar 4, 2021
Messages
17
Reason
CALS
Diagnosis
02/2021
Country
US
State
NJ
City
HOPATCONG
My husband, age 73, had 3 normal EMG's before 4th one raised likelihood of als and second six months later confirmed. My husband was convinced he had CTS before and after ALS diagnosis; and attributed other early weakness and pain to rotator cuff issues, meniscus issues which is what it felt like to him. After ALS diagnosis confirmed in Jan 2021, he has now this year surrendered to the diagnosis of ALS. He was tested for genetics and found to carry a gene that was 95% "probable" in explaining ALS (though in most cases there is no genetic link.) The genetic test actually helped him accept, though of course added complications for our son. It's so tough on patient and family because it is the trend line that confirms the disease vs a single test, and this obviously takes time and is confusing. Our doctor at Columbia stated they often see normal EKG (often multiple) with weakness and twitching, followed by (months later) abnormal EMG and still even more weakness.

The biggest challenges for us are determining the best equipment to introduce (and when) and finding reliable and experienced caregivers (his hands and legs failed first). With the equipment, I have sorted out movement support and am very happy with the equipment we have in place. OT and local 'mobility' companies have been helpful but I have made final decisions due to conflicting input. I had to decide which movement was essential (getting in and out of shower, getting on and off commode, getting outside, and moving from chair to bed) and then solve each challenge independently. Made mistakes and learned. Having this in place is a huge relief. The Gleason group has also been incredible for technical support including advanced wheelchair. Local ALS group and this site also very supportive.

On the emotional front, he is not receptive to counseling. He is initially hard on caregivers (impatient, testy). Sometimes they quit before he settles in. All this has left me continuously searching for care as he cannot be left alone. Our current M-F live in is fantastic from where I sit, and again we have his pattern. I've been harsh -- 'this person is keeping you out of a home...if she quits I am not sure I can find another...'. It feels that way to me after 4 months of a revolving door. Too much?
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
849
Reason
Lost a loved one
Diagnosis
07/2017
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DE
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BW
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Stuttgart
You have a right to speak up about these things as they affect your quality of life, too. You're his wife, not his employee. Try to remind him that accepting help from outsiders is looking out for you and your well-being. Which in turn helps you to take care of him and his needs. You sound like a great caregiver figuring out all the transfers and mobility on top of the caregiver situation (and everything else).

Dealing with care workers and acting as a buffer between their and your PALS emotions can grind you up. I very much understand the necessity of finding good people that don't feel too invasive or just plain annoying to your PALS. And I understand that a PALS struggeling to accept their situation can easily let it out on people in their private space. Having a stranger present in your home will constantly remind them of the losses and the helplessness.

Communication is key. Good luck with finding or keeping a caregiver that is not only acceptable but maybe even enjoyable for the both of you.
Come here to vent anytime you feel like it. It's just a lot.
 
Last edited:

Janders

Member
Joined
Mar 4, 2021
Messages
17
Reason
CALS
Diagnosis
02/2021
Country
US
State
NJ
City
HOPATCONG
Thank you for your kind works. Very much appreciated.
 

Mary2

Distinguished member
Joined
May 1, 2021
Messages
203
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
We have a caregiver that from a housekeeping viewpoint is not good. He doesn't wash PALS bib after feeding him, is not comfortable with the dish washer, doesn't wipe the table ect. However he is patient with PALS and tender when he washes him. He is conversational without being invasive. He is comfortable with the hoyer lyft. He is vaccinated, but I doubt he has any boosters. He is good to PALS and this seems to win the day over other shortcomings.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,270
Reason
Lost a loved one
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05/2013
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OZ
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lala land
Mary - getting everything in one package is so hard!
 
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