Old 03-17-2017, 03:27 PM #1 (permalink)
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Default Critiquing of Caregiver

I'm wondering how many caregivers on this forum have experienced criticism from family members regarding your caregiving? My PALS' best friend emailed a family member and complained. And my family member believed them! What is worse, my PALS also complained about me not being nice enough. While I agree that we need to be compassionate, I think we also have to be realistic.

On a separate but related note, is it true that PALS have a diminished sense of apathy for others' needs and wants?

I think people have a tendency to be hard on a caregiver who may not meet their personal definition of caregiver. The "pie in the sky" person always smiling, content, and giving.

Is this normal? I must say I was shocked when I received an email saying they didn't think I was providing good care. Of course this is from a long-distance. I emailed back and defended myself.

Am I a terrible person? I know I need to work on some things but I am here 24/7 for my PALS wife, and also care for my elderly father who is 95. Both at the same time.
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Old 03-17-2017, 05:18 PM #2 (permalink)
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Default Re: Critiquing of Caregiver

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On a separate but related note, is it true that PALS have a diminished sense of apathy for others' needs and wants?

I can't say I've been criticized by family, but I did actually say to my PALS today "Can you just yell at me for one thing at a time?".

I know he is frustrated and angry with his loss of independence and control. I try to take things like this with a grain of salt.

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Old 03-17-2017, 06:32 PM #3 (permalink)
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Default Re: Critiquing of Caregiver

ALS patients with Frontal Temporal Lobe Dementia have diminished mental capacity that includes lack of empathy for others. That includes a strong tendency to ignore their caregivers most basic needs, complain about and resent the caregiver's inability to do everything, including stopping their progression. This dementia is not limited to ALS patients.

With the exception of some who were self-centered asses to start with, the majority of us DO NOT lack in empathy for our caregivers. We feel terrible guilt for what we are doing to their lives. We cry about how our needs keep them and our children from the lives they should have. Some of us choose to die for the sake of our loved ones by refusing the life-prolonging measures offered to us. No one can be a perfect patient or a perfect caregiver in any deadly disease, but to say we lack empathy is dead wrong. Erase that -- and any other information -- from that ignorant source!
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Old 03-17-2017, 09:00 PM #4 (permalink)
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Default Re: Critiquing of Caregiver

I don't think my PALS has FTD. And he is not a self-centered ass. Sometimes, the frustration just gets the best of him. Most of the time, he does feel bad for what he is putting our family through. Some days are just tougher than others.
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Old 03-18-2017, 12:23 AM #5 (permalink)
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Default Re: Critiquing of Caregiver

Florida, there isn't a CALS who hasn't experienced diminished empathy from his PALS, and been chastised for some perceived inadequacy. None of us CALS knows how it is to wake up and be paralyzed every day, to have the most basic physical needs met only by others, and to face death most likely from respiratory insufficiency. It is a mentally and physically exhausting existence even before you factor in the myriad physical issues that immobility and loss of voluntary muscle control lead to. But the CALS likewise has the best opportunity to help the PALS make that existence a "life" worth living for however long -- that's the way this works. Best, Laurie
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Old 03-18-2017, 05:46 AM #6 (permalink)
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Default Re: Critiquing of Caregiver

The one thing I don't do is take advice from any family. I am my brothers only caregiver. The rest of the family lives miles away. Especially at the beginning I had advice being given from all of them. I should be doing this. I need to do that. I finally just told them all to feel free to step up to the plate if they wanted but I could not take anymore advice. The only person I now worry about pleasing is my PALS. He's the boss. He sometimes gets moody but has never criticized my caregiving (not to my face anyway). I would tell them all to put up or shut up. Your doing the best you can.
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Old 03-18-2017, 10:36 AM #7 (permalink)
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Default Re: Critiquing of Caregiver

Hi Soakland,

Laurie is spot on about the relationship between CALS and PALS. I know my own PALS is not always particularly empathetic because he's scared and overwhelmed a lot of the time. He wants what he wants and doesn't always understand things might take time or I just can't do some things. The other side of it is, I am the only one who he trusts to take care of him and be in his corner, We have our good days and bad days, just like we did before ALS.

What has helped me and my PALS, is to check in from time to time. Just talk about what's going on, challenges I'm having, challenges he's having. Everyone always pushes the CALS be positive and upbeat all the time around our PALS. I wasn't like that before ALS and try as I might, I can't be like that now. I do my best as do we all.

It's easy for people outside to criticize. My PALS family has been pretty awful a few times.

My PALS wanted to be showered once after he couldn't navigate the stairs to our bathroom. I had hurt my shoulder and couldn't carry him. He got on the phone to his sister, complaining. She showed up with her husband and daughter in tow all lathered up that of course he could shower, a bed bath was not sufficient. For the next 15 minutes the three of them proceeded to get him into the bathroom. I had to go up and get him undressed and into the shower, then back out when he was finished. The three of them then brought him back downstairs. His sister rather smugly announced , "See that wasn't so hard." Her husband turned to her and said, " It took three of us, how is he supposed to do that by himself?" They left and of course I didn't see them for another month or so.

Really easy to be critical when all they see is a snapshot, not the day to day reality. For my PALS, seemed like a simple enough request. Execution is a whole different story. The perception was that I was being neglectful or unreasonable. The reality, I couldn't do it by myself. I needed help.

Try not to take it too personally. Hard to do because this is a very personal thing.

Talk to your wife, see if there is something she feels she would like done differently or if it was just a bad day when her friend visited.

You have a lot on your shoulders taking care of two people. Try not to be too hard on yourself.

Paul
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Old 03-18-2017, 05:21 PM #8 (permalink)
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Default Re: Critiquing of Caregiver

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Florida, there isn't a CALS who hasn't experienced diminished empathy from his PALS, and been chastised for some perceived inadequacy.
True, but so is the reverse. PALS get yelled at, given care with obvious anger, put off, muttered at, snarled at, eye rolling and questioning of their requests. A caregiver would have to be a saint to never criticize or complain so failures of empathy go both ways.
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Old 03-18-2017, 07:19 PM #9 (permalink)
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Default Re: Critiquing of Caregiver

The best solution I have found for "back seat drivers " whether family or friends is to have them come help for a weekend or at least a full day. We work so hard to get everything done before a visitor comes that I don't think they have a clue what goes into a full day. Once they did this at my request, I saw a 180 change in attitude. Plus, as things progress we really do need help on a consistent basis.
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Old 03-18-2017, 11:42 PM #10 (permalink)
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Default Re: Critiquing of Caregiver

Absolutely, Diane, it cuts both ways. I was responding to the OP's particular post.
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Old 03-19-2017, 09:51 AM #11 (permalink)
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Default Re: Critiquing of Caregiver

Brian is usually kind and considerate, but a few times his frustration has popped out and I don't think it has jack to do with FTD. The hyper vigilant, perfectionist energizer bunny is watching us body and his life leave him and he can't be sweetness and light all the time. He got on me today about forgetting stuff at the store and letting the cat boxes he use to do slide. I told him to stop it and he did.

Other critiques? Mmmm yea try me!
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Old 03-19-2017, 12:00 PM #12 (permalink)
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Default Re: Critiquing of Caregiver

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... We feel terrible guilt for what we are doing to their lives. We cry about how our needs keep them and our children from the lives they should have. Some of us choose to die for the sake of our loved ones by refusing the life-prolonging measures offered to us....
The thought that my husband would feel this way (and he would) breaks my heart, and so, in a way, his cognitive decline has been a blessing. He is actually a pretty happy camper as long as he can watch his favorite TV shows. He does love to point out when I mess up, and usually we share a laugh about it. Every once in awhile, when I'm especially tired, I let it get under my skin. Mostly, though, I think we just have to realize it's the ALS talking. I do mess up enough that we get a hardy laugh every single day. Just like the 30 years pre-ALS!
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Old 03-21-2017, 07:50 AM #13 (permalink)
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Default Re: Critiquing of Caregiver

My mother in law is visiting and he is criticizing every thing to the point I am counting the days for her to leave.
I hired a caregiver and we give my husband a bath every day, now she is telling me that showering him every day is what makes him so tired.
I bought lunasin and I am giving him this supplement and she is looking at me suspicious, making comments like that is maybe making him sicker.
I have bunch of cotton t-shirts for him and she says I should use open bottom shirts.
I work full time, spend the night to my husband to assist him when he needs restroom. I get up at 4 am. and she still criticizes uhh !!
I told her that his children and brothers should help (they haven't giving him not a pair of socks) or help any way but she says that they are all busy and the poor things can't help.
I am exhausted and I am trying to be patient with her for the sake of my sweetheart. He just smiles and wants me to be with him all the time.
But yeah it is easy to criticize when you are no the one to help everyday.
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Old 03-21-2017, 09:19 AM #14 (permalink)
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Default Re: Critiquing of Caregiver

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True, but so is the reverse. PALS get yelled at, given care with obvious anger, put off, muttered at, snarled at, eye rolling and questioning of their requests. A caregiver would have to be a saint to never criticize or complain so failures of empathy go both ways.
Amen Diane! Especially when your spouse works full time and takes care of their Pals. I can barely get a sentence out on my iPad. Sometimes it feels like my Cals has FTD'

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Old 03-27-2017, 09:27 AM #15 (permalink)
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Default Re: Critiquing of Caregiver

Normal relationships are never perfect...loving couples snap at each other, roll their eyes, mutter under their breath. how can anyone expect to be the "perfect" caregiver or patient at all times? Now, certainly I tried very hard to always be kind and loving to my pals but it was impossible. But on the other hand, there are pals who are mistreated and unloved by their cals simply because not everyone is cut out to be a caregiver.

it makes me sick that family out of the area are writing and complaining about someone's caregiving abilities. If they are worried, they need to come and visit and really jump in to help. observe the whole situation and figure out how to help both the cals and the pals. so many things could be done by people out of the area to make life a little easier. yes, it costs money since they cant give the time, but you are giving both every single day.

I don't know you, but let's say you are verbally or even physically abusive to your wife-pals. so she reaches out for help from someone out of state. They best they can do is write you an email and tell you to be nice? really? That is BS--if they cared they would get their but in gear and come to visit her. now Do they need an update everytime you do something nice?

you should not have to defend yourself to others --caregiving is HARD!
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