Your PWD Can't Do Anything!

Iris L.

I have cognitive impairment and I can do less than fifty percent of what I used to be able to do. I see many posts enumerating tasks that the PWD can't do. A PWD can do much less than I can do, much less. They misuse things, lose things, and break things. They need failure-free activities. It is hard to accept but it is better to accept now because it's going to get worse. I did all of the above until I learned to compensate. But that is the difference between me and a PWD, because I don't have anosognosia and I can compensate.

Iris

storycrafter

Iris, I usually read in the spouses forum and missed this post until I happened upon it today. I think I get the gist of what you're saying. Your observation really hits home about the difference between being able to learn to compensate, while a PWD cannot. I am actively learning what that means and what a HUGE difference it makes.

It's very helpful for me to read your comment because I need to review the facts of the matter now and then to remind myself what is true. I want, and need, to always be in acceptance of reality, but sometimes find it hard to stay there. It's been very hard to get my mind around this aspect of my husband's FTD. We've been at it for years now - his journey is long and very slow - and it baffles me at times what my mind does with it.

Because he is so highly functioning in general, it's easy for me to slip into a default mode. I'm not sure how to describe it. It's like a sort of conscious denial, a temporary "forgetting" of what is.

Intellectually I know the fact of the matter of his illness. Intellectually, and emotionally, I remember the horrendously stressful, crazy journey of the many years it took to reach a definitive diagnosis. And I remember the tremendous relief when he got on medication that returned significant quality of life. I was also able to begin building a new support system for us.

It's really important to remember my dh cannot hold and complete the complexities of thought that it takes to accomplish certain tasks. If I don't acknowledge, understand, and accept this, I set myself up for rude awakenings and major difficulties that are detrimental for both of us. It makes a hard situation even more difficult.

I hope you'll pardon me for going on so long. I thank you for bringing up this important point and "saying it out loud" for us. I needed to hear it at the point my LO and I are right now. I hope to absorb the truth of the matter more completely so I can stay in awareness and acceptance more often.

When I learn, absorb, and really GET what this means for us, I know my life is going to feel more sane. I'll be able to make better choices for handling our situation. It will relieve some of the constant stress that's part and parcel of this difficult journey.

Thank you so much for sharing your thoughts with us!

Iris L.

I'm glad I offered some insight to you, storycrafter. I'm glad you responded. I often wonder what is meant by saying a PWD is "highly functioning" yet "cannot hold and complete the complexities of thought that it takes to accomplish certain tasks".

From what I have observed, I think family members persist in having too high expectations for too long a time.

I think what can relieve some of the "constant stress" is lowering one's expectations to reality. And the reality is that the LO can't do much of anything, in the way that seems compatible with independent adult functioning. The sooner one adapts to the PWD's level, the sooner constant stress will be relieved, I think. There might even be an element of relief in the household. I'm glad you have obtained a more acceptable quality of life now with appropriate treatment. Quality of life is very important.

Iris

housefinch

I think most people don’t know much about executive functioning. I do because of my profession (pediatrician) and strong interest in developmental-behavioral pediatrics, which ironically has lots of applications to dementia. I have 2 kids with neurodevelopmental disorders and spend most of my free time scaffolding their skills. I agree with you that educating people is key. Also, accepting that my beloved children struggle in these areas has been the hardest lesson of my life. That emotional pain is very hard to face and likely causes many people to overestimate what their family members can do. Thank you for your wisdom.

SusanB-dil

Iris - thank you for your posts. this one and past... I've learned some good points from you - and Wendy Mitchell's books. So - yes, thank you. Iris, you are appreciated!

I see a huge difference between my mom and MIL. Mom knows she cannot do certain things, does not have anosognosia, and can compensate a lot of things way better than mil. MIL has anosognosia and I see where she cannot compensate, I think maybe because she doesn't see that she needs to. 'compensate for what?!'

My mom accepts help as needed. MIL doesn't think she needs any...

Mom took herself off the road, MIL would still be driving had we allowed it, even though she got lost several times - and came to an intersection and forgot what to do.

Your thoughts about a 'highly functioning' PWD... I wonder if it is because a loved one is referring to an earlier stage their person may be at, rather than a later stage (where one wouldn't be functioning as well).

Iris L.

House finch, I was a board certified pediatrician and Chief of Pediatrics for my seven member pediatrics group when I began having serious memory problems. Now, I categorize my functioning as about high school level, definitely a decline. But I am able to function with accommodations in my home. When I read posts of PWDs' low functioning, I automatically equate their functioning to childrens age groups' functioning. I know many people are averse to equating adult functioning to children's functioning, but I find it answers many questions quickly. When I read a post, I often say to myself, would I let a 10 year old, or seven year old, or five year old do that? If the answer would be no for the corresponding child, then the answer would be no for that declining adult. I don't see it as disrespect, I see it as a matter of safety.

SusanB, often a caregiver member will refer to the LO as highly functioning while giving examples of low functioning in the same sentence. IMO, this is classic denial. I feel bad, I see it so often. My goal of posting this thread was to try to get caregivers to stop having false high expectations. Then they can address what needs to be done, instead of being constantly frustrated and annoyed, and waiting for something that will never happen. I can say this because my own functioning is low, lower than before.

Iris

SusanB-dil

Ah... yes, that makes sense. Thank you

housefinch

@Iris L. You do the same thing I do—-estimate a person’s functioning at a child’s age. And then I shudder at what those PWDs are being allowed to do. But I live with a daughter who will need lifelong support, and I approach this from a different perspective than trying to detect loss of skills. My family member (caregiver for PWD) doesn’t want to hear my opinion on our PWD’s cognitive abilities, though, because she wants to believe he is better than he is. I’m sure you’d agree with me that many families on these boards would benefit from the diligent and tireless advocacy we do for our patients, especially those with intellectual disabilities or complex needs. I’m sure your patients and their families treasured you as their pediatrician and think of you fondly.

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Iris L.

Housefinch, I have found that doctors for adults do not have the same sense of advocacy towards their patients as doctors for pediatric patients. My experience as an older adult woman patient has been dreadful, with a few good exceptions. Also, in my last days as a practitioner, I struggled mightily, and thus received complaints and warnings. It was probably the worse time of my life.

Iris

housefinch

@Iris L. @Victoria2020 Iris, I’ve seen that lack of care coordination at a stunningly poor level even with my family, who have good health insurance & access. It’s shameful.

Accepting my children’s deficits and adapting my interactions to meet their needs has lowered our household stress level and raised their happiness immensely. I notice a similar pattern here with families sometimes with PWD. It’s a long, hard process to get there, though. Fascinating discussion & I appreciate your insights. I’ll stop hijacking this thread now 🤣

Iris L.

Housefinch, you are not hijacking. The message board works by bringing out members' experiences. This is how we know that our seemingly singular and isolated experiences are not so, but are more universal. Understanding that I was not alone in my despair drew me out of my deep depression in 2010, when my psychologist had no encouragement or hope for me.

Iris

SDianeL

Iris L, Thank you for this post. I made me thing about our journey in a different way. My DH, 78 was diagnosed 2 years ago. At that time I thought he was "high functioning" because I wanted to believe that. Once the results came back from his 3 hour test, I was shocked. The Neuro Psychologist immediately said he could no longer drive. I said "WHAT!?" He drives just fine. I needed that reality check. Once I accepted the diagnosis & the results of the test and really paid attention to his behavior I realized he wasn't high functioning but good at covering up (not compensating). He was driving very slowly, hitting curbs & getting confused at traffic lights. He would lose the car keys and get very angry. Soon after his diagnosis he could no longer use a phone, remember relationships, tell time using an analog clock or watch and other things as the disease progresses. He does have anosognosia. As you explained compensation for cognitive impairment is very different than covering up behavior. My DH is now like a 10 year old. Would I allow a 10 year old to drive? to handle finances? to make major decisions? But even more than that, another shock to me came when the nurse asked my DH if he were alone in the apartment and a fire broke out, what would he do. He thought for a long time and said "I would probably try to put it out" -- not call 911. Not get out. She waited a few minutes and asked him what else would he do and he again paused a long time and said "nothing" -- I've never left him home alone since then. Thank you again for your insightful post.

Mimi50

Iris I think that I am understand what you are saying. My husband that he was functioning at before he was diagnosed dementia. Is gone so expecting him to complete tasks that he can no longer do. Is stressing him out. My expectations are too high and unrealistic. Once I accept that our lives,will be much better. The last thing I want to do is hurt him. His happiness is the priority. Thank you very much for your wise words. I needed hear them.