cognitive vs ADLs

Lilydaisy

I expect that some of you have been in the situation I am in with my DW. Her neurologist described her condition as "severe" last week at a 6-month evaluation, but then went on to say that her ADLs are good and she is physically ok. That leaves me wondering if one is more important than the other regarding the need for MC. I don't think she is anywhere at that point yet, but I realize from others how quickly that can change. It seems like the caregiver might cope better with cognitive loss than loss of ability to handle ADLs. Any thoughts on this? Thanks in advance.

Vitruvius

It was the inverse for me caring for my DW. Caring for her declining ability to perform ADLs was never a problem for me. Not even changing her due to incontinence, or helping her dress or bathe, even when it got to the point where I had to do it all and she was not even able to cooperate because she didn’t know what was I was trying to help her with. I did this all gladly and without hesitation, and frankly not much stress. For reference she was only in her late sixties and previously very fit and active. (She is now 73 and in Stage 7f, the very end of her journey. I hand feed her and it’s no problem for me.)

No, the difficult part was dealing with her cognitive loss which brought on confusion, anxiety, agitation and a bit of resistance. This was by far the biggest stressor for me as I tried to calm her and make her feel safe and comfortable. Her physical care was easy (even incontinence). Caring for her emotional turmoil that dementia causes was the daily struggle. It also pained me greatly to see my beautiful, intelligent wife so confused and frustrated at what was happening to her.

This is what led me to ultimately place her, I was stressed to the limit and verging on a serious skin disease due to the stress and it broke out as soon as I placed her (you’ve been here long enough you may remember my story, a potentially deadly condition that kills 80% in one year without proper treatment). The placement actually immediately made her calmer. It seemed our house was a trigger for a lost lifestyle of hobbies and chores that she couldn’t quite understand anymore. This greatly heightened her anxiety. She adapted to the MCF immediately and never once mentioned going home as others here report. It seems she was free of nagging feeling that she should be doing her old routines. She was calmer and happier at the MCF, and I was able to recover.

Bridge4

My DW seems to be very similar to yours. Her personal hygiene ADLs are all intact, although she takes at least twice as long to do things now, but her cognitive abilities have declined significantly. I am relieved and thankful for all the ADL tasks she can still manage. However, the anger, agitation, paranoia, and zero short-term memory (except for things that have a negative emotional trigger, e.g. my so-called “mistakes and moral failures”) are just maddening. It’s like having a drunken toddler running around the house constantly confused about things and shouting belligerently that you keep screwing everything up, or worse, are deliberately scheming to undermine them in some way. It’s even more frustrating that they can “Showtime” and temporarily conceal these behaviors in front of others and then unleash them against you again without a shred of guilt or remorse. I read somewhere that in staging a dementia patient you should place them in the stage where the most advanced problems are first observed. Thus, the severe cognitive impairment can be a sign of a more advanced stage and higher level of care needed, even when ADLs might still be intact.

Abby627

This may sound stupid but, what are ADL’s?

blacksparky

https://alzconnected.org/discussion/comment/238915#Comment_238915

Activities of daily living. I believe there are 5 of them. Eating, walking, toileting, bathing and dressing all without being helped. There are also IADL’s. These are activities that we all do occasionally like paying bills, washing clothes, cooking, making coffee, balancing checkbooks, etc. Hope this explains it for you.

Carl46

A PWD qualifies for NH or MC when two or more ADLs are compromised, or when they require constant supervision.

In my experience, placement in MC comes when the caregiver can no longer prevent wandering, cannot get adequate sleep, is in danger, or when the stress of being on duty 24/7/365 affects the caregiver's health. All these are cognitive symptoms.

Helping my wife select appropriate clothing and put it on is no problem. If she starts walking out the door in her night clothes while I am asleep, I will have a problem.

harshedbuzz

https://alzconnected.org/discussion/comment/238915#Comment_238915

Activities of Daily Living.

These are the skills we learn as young children— toileting, hygiene, self-feeding simple foods, dressing. IADLs (Instrumental Activities of Daily Living) include the sorts of things one learns as a teenager/young adult— driving money management, meal preparation, emergency response.

@Lilydaisy—

I feel like the answer to your question is going to be highly variable based on the presentation of the PWD and how capable or willing the caregiver is around the PWD's needs. Wandering, sleep disturbances, shadowing and incontinence are often issues that trigger placement.

My other thought is that caregiving spouses are not always the best judge of their LO's ADLs as they're so close to the situation they don't realize the many ways they scaffold and support their spouse in ADLs because it's become so intuitive for them.

HB

Whyzit2

I’m one of those caregivers who under rated my DHs adl abilities. Being with him 24/7 I accepted his decline because I was used to it. I was shocked recently when after a brief hospitalization, the in home follow up care team rated him as +1 on ADLs meaning he is only capable of doing one of the five (eating). I have met with the lawyer and am applying for Medicaid.

Lilydaisy

https://alzconnected.org/discussion/comment/238923#Comment_238923

I think you may be right about not recognizing ADLs declining. I was thinking about that early this morning and realized that I was more optimistic than I should have been.Still pretty good, but not as good as I said.

Lilydaisy

https://alzconnected.org/discussion/comment/238899#Comment_238899

Thanks for sharing those experiences and thoughts. It is helpful.

Lilydaisy

Thanks for your helpful input. Each situation has similarities along with differences to learn from.