How to help

MerriMom

 My dad 

Has always worked hard, long hours to support his family. He has always come home to a meal and watched his tv shows in the living room with a TV tray. He used to go out to week on payday but mostly to Golden Corral. He has never wanted to brush his teeth, take a bath, or go to the shower. So wtt he ‘‘em he moved in with us 2 years ago the main thing I noticed was that he tried to get into the wrong car. He was also repeating himself and forgetting conversations. So now he is forgetting words. He’s talking less and less. He’s not eating much. He watches tv most of the time and doesn’t leave the house except for appointments. I don’t know what to do. I try to get him to do something with us but he’s not engaged for very long. And w  he en he’s asking me about doing something together we don’t feel like it. 

I know that he falls asleep in his recliner and will become more and more withdrawn. I know that he can become depressed from feeling confused and alone. 

I know that a good thing for him is to have a schedule with activities for him to do. 

I got him to look through a photo album with me the other day and he was antsy and barely sat through it and went right back to his room. 

I took him to watch the girls ride bikes and he walked into an empty side street to get out of the sun. I didn’t know if he was going home or what he was doing. 

I don’t know how to help him. 

sandwichone123

It sounds like he has a very short attention span. If you plan an activity for five minutes it may work better than if you plan a longer one and he checks out after five minutes. Looking at a couple of pictures may work better then looking through a whole album.

The question of how to help him may be more easily addressed if you define a goal. It sounds like you may have a goal of having him more integrated into the family, or more active, or less passive, or something else. What we *want* for a goal is for them to get better, but we don't get that one. What are you hoping to achieve?

May flowers

Do you think your dad might benefit from a daycare program? 

My FIL was just as you described, he would either walk for hours on end or sit, doing nothing. I could not interest him in any activity. I wasn’t sure how he would be at MC but maybe it was something to do with being around his peers, but he really perked up. He didn’t participate in all the activities but he seemed to enjoy being in the group and interacting with them some. He even made a few friends and a walking partner.

Maybe daycare could do the same for your dad. Just a thought.

harshedbuzz

MerriMom wrote:

 My dad   So now he is forgetting words. He’s talking less and less. He’s not eating much. He watches tv most of the time and doesn’t leave the house except for appointments. I don’t know what to do. I try to get him to do something with us but he’s not engaged for very long.

This sounds like garden variety apathy which goes along with dementia. He doesn't sound as though he had a whole lot of passionate interests and hobbies before dementia, so a part of this might just be his personality amplified by dementia.

And w  he en he’s asking me about doing something together we don’t feel like it.  

Then it's a lost opportunity- sometimes you just have to jump on it when they're willing and be OK when they lose interest in 5 minutes.

It could be he's expressing a desire to connect in a way that doesn't require effort or input he no longer can muster. Many PWD are content to just be with their people- to sit quietly, to be read to, to have lotion rubbed into their hands or their hair brushed. Sometimes music from their youth is the best way to reach them.

I know that he falls asleep in his recliner and will become more and more withdrawn. I know that he can become depressed from feeling confused and alone.  

That is a part of the disease process and not something you can stave off IME.

I know that a good thing for him is to have a schedule with activities for him to do.  

I know that this sometimes is suggested as a "best practices" approach, but I feel like it's a little one-size-fits-all. My dear aunt loved all of the activities and participated in crafts, outings and activities; ironically she'd been a bit of a hermit before dementia with a few life-long friends. My nasty aunt couldn't be engaged in anything. My dad was socially active in the earlier stages, but not so much in the middle or later ones. 

I got him to look through a photo album with me the other day and he was antsy and barely sat through it and went right back to his room.  

This is often suggested as an activity. It was something of a fail for us. I invested in a Nixplay wifi enabled frame that allowed us to load it with family pictures. For the most part, dad had to be prompted to look at it and he was mostly interested in pictures of him and from his youth.  

I took him to watch the girls ride bikes and he walked into an empty side street to get out of the sun. I didn’t know if he was going home or what he was doing.  

I know that you are trying to foster a bond between your dad and children, but you may only have limited success around this. It can be a combination of apathy and time travel. I found my PWD sort of time traveled. My dear auntie thought I was my mom (we do look alike) and ignored her sister when we visited. She also believed she was living in the married student housing at Rutgers just after the war.

Dad spent a lot of time back in the 1960s and 1970s. This was where his interest were most of the time and he asked a lot after people he was friends with back then.

While he knew and recognized my mom and I and even my son and nieces, he was hazy on my husband of 36+ years and referred to him as "the tall guy harsh seems to be shacked up with".  He "knew" my son who was at his house a couple times a week, he was much more interested in my sister's daughters who were more than a decade older and with whom he'd been very close. He even got on my case because I'd not included any recent pictures of the younger one (because she's an addict who tried to steal from them and is persona non grata) he hadn't seen in over 10 years. I was able to find one on FB and added it- he recognized her but then mistook his urologist for my son. (he's of Japanese ancestry and my kid looks like Ed Sheeran)

Another piece is that often PWD can be a little jealous of beloved younger kids as if they were competing for the attention of their preferred person. 


HB

I don’t know how to help him.  

It sounds like you are doing what you can. It may make sense to at least try a couple days/week at a day program with trained caregivers and people closer to his age. 

MerriMom

sandwichone123 wrote:

It sounds like he has a very short attention span. If you plan an activity for five minutes it may work better than if you plan a longer one and he checks out after five minutes. Looking at a couple of pictures may work better then looking through a whole album.

The question of how to help him may be more easily addressed if you define a goal. It sounds like you may have a goal of having him more integrated into the family, or more active, or less passive, or something else. What we *want* for a goal is for them to get better, but we don't get that one. What are you hoping to achieve?

Yeah I'm still dealing with the fact that he won't get better. He's not the same man he used to be. He won't even be as active with my younger daughter as we was with the older one at her age. It's just sad. 

MerriMom

May flowers wrote:

Do you think your dad might benefit from a daycare program? 

My FIL was just as you described, he would either walk for hours on end or sit, doing nothing. I could not interest him in any activity. I wasn’t sure how he would be at MC but maybe it was something to do with being around his peers, but he really perked up. He didn’t participate in all the activities but he seemed to enjoy being in the group and interacting with them some. He even made a few friends and a walking partner.

Maybe daycare could do the same for your dad. Just a thought.

I called a senior center, and they want him to be independent and to visit with other people. I don't know if he would be more active there or not. There's a daycare with trained staff and activities for people with dementia, But they cost $80 a day. 

harshedbuzz

MerriMom wrote:

I called a senior center, and they want him to be independent and to visit with other people. I don't know if he would be more active there or not. There's a daycare with trained staff and activities for people with dementia, But they cost $80 a day. 

A senior center is not the same as a day program or day care. Your dad is no longer an appropriate candidate for a typical senior center.

Senior centers are community centers for older people who have not had a cognitive shift- they offer activities and companionship for are able to participate independently. Often they're run by the members themselves volunteering.

A day program will have professional dementia trained professionals on hand in greater numbers to lead failure-proof activities and with caregiving tasks which results in the higher cost. 

Another option that may be harder to find is a Memory Cafe. These are scheduled meet-ups for PWD and a caregiver that fill a shorter time slot and offer activities for them together. These aren't as expensive as a drop-off program and might off you some strategies for new ways to engage with dad.

Jo C.

I so remember my having the same feelings about my LOs with dementia; both my mother, FTD, and my step-dad, Alz's. 

We had a social worker who made home visits ala a special community program.  I had tried and tried to no avail to provide activities both passive and interactive with no success whatsoever..

The social worker wisely told me, I was judging activity by what I myself would want or thought what was good; NOT what was desired or even tolerated or processed by my LOs.  Sometimes the presenting and pushing into an activity whether interactive or passive is just too much for the brain to process and it is a negative for the LO.

So; I let go and it was much calmer.  My mother had an eight year span of illness until her death.  She would fuss with little things that she herself wanted to do and often was just quiet.  She wanted to sit in front of her dresser and go through "arranging" her drawers - time after time after time. No harm, she was doing what she wanted to do and was capable of processing what she was doing.  Noise and too many people or even a few people around her caused her distress as she could not process the dynamics; even from a beloved grandchild.  We learned to honor that as much as could be.

 My step-dad had a 20 year length of time with his Alz's.  He eventually could not tolerate being given activity, he knew who he was, where he was and who we were; but it had to be quiet and peaceful.  His acceptance level for his very own interests was sitting in his recliner, watching favorite programs, having little snacks, eating custard pie (his favorite and we had to buy it for him from Marie Calendars each week), sometimes looking at the newspaper, and taking tiny naps.  His quality of life was excellent when permitted at his pace.  He stayed ambulatory and continent until the very last month or so of his life; if we took him out of the house for a ride or a visit with family, he was undone until he returned home to his own level of comfort; we soon understood and kept to his needs. 

So . .  once size does not fit all and we need to tailor the dynamics for what our LO is capable of accepting and dealing with if all other well intended attempts have failed.

J.