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 keeping Dad stimulated? 
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Joined: Sat Jun 18, 2011 9:53 pm
Posts: 17
Location: Costa Mesa, CA
Post keeping Dad stimulated?
I posted previously questioning when to move my Dad but I think that was premature at least for the next 12-24 months (and of course nothing is totally predicatable)....

Prior to my intervention in August 2009, my Dad had stopped driving and become basically couch-bound. So, I know (for a couple of years) he had nothing stimulating going on.... Since he's been living down near me (a mile away) at an independent living community. He IN NO WAY does anything to participate - takes meals via room service, does not attend visiting musical/singing performances or community cookie/drink afternoons, etc.

I want to try to find some ways (now 2 years later :( ) to keep him more stimulated as he either sleeps or watches TV as his primary activities. I've been taking him to phys therapy twice a week but that willl end soon. I try to take him out for lunch or have him over for dinner once a week, and a couple days a week, I sit with him while he has his dinner. Lately, we've been going to doc appts nearly daily and that ends up counting as my 'activity' time with him. He does not complain of loneliness or boredom but it has to be a factor to some degree.

What are some ideas that I might employ (like daycare? - which he might even resist and say he's 'too tired')? He used to time himself on the NY Times crossword puzzle but has given those (and most reading) up. I have a home business that is flexible but I cannot do all that I feel like I should do so maybe I need to look at additional paid-services that can help me enrich his dull life. I doubt he'd do a traditional puzzle by himself.

Problem is that Dad would need mild supervision if I weren't there and most likely help to/from the bathroom, so do I need to be looking at specialized programs? I feel neglectful that I have allowed him to sit and stagnate for so long.

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Jenna - daughter of Dad diagnosed in 2010 with PD and in 2011 with probable LBD. Symptoms were present for a few years prior. Dad is 74.


Wed Jul 06, 2011 8:06 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: keeping Dad stimulated?
My mother is very much like your dad. She takes her meals in her room and refuses to join in any activities or entertainment. She can no longer read a book, do crosswords, knit, follow books on tape, etc. I tried to get her into the group activities and she just balked. Her neurologist said that being in a group setting or having a lot of activity around her could be overstimulating and make her uncomfortable. So I gave up on urging her to go. She does like to walk and can still walk the halls with her walker and in good weather walk the grounds so that is a good outlet. It is very sad to their world just shrinking, isn't it? I don't have any practical advice, but just wrote to say your dad is not alone in this.

Julianne


Wed Jul 06, 2011 10:03 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: keeping Dad stimulated?
Jenna, I think you have a very good goal in mind. If you can accomplish it (a big if) it might improve Dad's quality of life now, and postpone moving day. (Might is the operative word here.)

When the case worker mentioned a personal mobility scooter I thought she was out of her mind. But she suggested it to Coy and I didn't want to be the bad guy who always said no, so we got one. It did wonders for his sense of independence. He went to the library on his own and had a cone at the ice cream shop on his way home. He went to afternoon movies sometimes. He could go on errands for me sometimes. He could get his own haircuts. Now we "walk" together with him on the scooter and me huffing and puffing to keep up. It is a godsend for fairs and similar events.

I also got Coy a simple cell phone, which he carries, turned on (! -- he forgets) so I can call him if I think he has been gone longer than I expect and he can call me if he needs to ask me something (like what he went to the drug store for.)

Since you live close together Dad could come visit you. Obviously this depends on his cognitive level, whether he is likely to get lost, how well he functions in public, how busy your streets are, etc. etc.

I mention the scooter because I never would have thought of it on my own, but it has been a very useful, meaningful addition to Coy's life.

Coy goes to an adult day center (we do not refer to it as daycare :lol: ) a couple days a week in summer and three in the winter. They have all kinds of stimulating activities, most of which he ignores. He sits in the quiet room and reads or naps. But I think that even if he only participates 20% of the time, that is more stimulation than sitting and reading at home, and I think a little adult interaction is good, too.

Coy generally won't do things like puzzles or games on his own, but he will with a companion. His daughter plays cards with him when she visits and I play a sudoku game with him. I'm trying to arrange for my disabled brother to come over and play games with him, too, thinking it might be good for both of them.

One of my local caregiver group members had a PCA for her father in the nursing home, 40 hours a week, specifically for the stimulation and companionship. Hiring someone to come in and play checkers or do crossword puzzles or cards or put a jigsaw puzzle together -- things that might be enjoyable with another person but that Dad wouldn't do on his own -- might be worth considering.

Coy also plays golf with a league sponsored by a local rehab center. And he bowls with a senior league. I don't know what your Dad's physical condition is like, but if there was any activity he liked in the past, it might be worth some research to see if there is a special needs version of it he could do now.

Good luck to you!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Jul 06, 2011 11:28 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: keeping Dad stimulated?
Adult day health care sounds like a great idea. Nursing supervision is provided. (Medicaid often pays some amount towards adult day health care, if that's an option for your father.)

You might hire someone to talk with him, read the paper to him, etc.


Thu Jul 07, 2011 12:16 am
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: keeping Dad stimulated?
We're struggling with this too for my mom. She lives with my dad and younger brother right now but she doesn't do anything all day. We're not exactly sure what she does all day long on the days my dad and brother both work. My dad has severely cut down on the hours he's working ever since my mom went into the hospital just before Thanksgiving 2009 but he's losing a lot of money and will need to at least start working 4 days a week soon.

My dad and I are both worried that she's just not stimulated enough but she doesn't interact much at all even if someone is there with her. He's planning to take her into a new neurologist in town to see if they have any ideas or resources to help but at this point cost is also an issue, unfortunately. We'll see what happens.

It sounds like adult day care might be a good option to try for your dad - if he doesn't like it, then at least you tried! Good luck!

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Fri Jul 08, 2011 5:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: keeping Dad stimulated?
I used to worry about stimulation/activities for Derek, too, as he seemed so uninterested in everything. Doesn't watch TV, can't read or write any longer, doesn't want to paint, color or do any crafts, ignores people unless they are being noisy, then complains. The activity director at the SNF wore herself to a frazzle trying to interest him in something. They [or I] will take him to various concerts or performances in the main dining hall [they have some excellent live music!] but he just sleeps in his chair. If it's too loud he will want to leave.

There are a LOT of interesting activities going on in his brain, however, so maybe these delusional scenarios keep him entertained. [Today he asked me if I was going to Norway. Norway???] He has his radio set to a good classical music station and it seems to soothe him.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Jul 08, 2011 6:23 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: keeping Dad stimulated?
Pat,
I agree with you they don't all need stimulation and much depends on where they are in the illness, maybe earlier on is more important for that, I say as long as they can do something that's great but once they can't that's OK too !

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Irene Selak


Sun Jul 10, 2011 12:58 pm
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Joined: Sat Jan 30, 2010 3:53 pm
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Post Re: keeping Dad stimulated?
Pat, I think you make an important point. Mom is very busy in her own way, I guess. She spends quite a bit of time just sitting at the dining room table and says that she's just going through things and sorting things. It doesn't make a bit of sense to anyone else (what about this disease does???) but I guess if it's productive to her then that's what matters! I think it would definitely make us feel better to get someone to be with her during the days my dad can't be there though, just for our peace of mind.

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Tue Jul 12, 2011 4:58 pm
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Joined: Wed Mar 02, 2011 1:11 pm
Posts: 27
Location: Michigan
Post Re: keeping Dad stimulated?
My husband is at a similar stage to Pat's. Friends and relatives encourage me to keep him active, but it's so hard for him that he's miserable, which in turn makes me miserable. I do the best I can, and when others offer thoughts about forcing him to get out, I smile and tell them I really appreciate their suggestions. In the meantime, he, too, has some interesting imaginary friends.

_________________
Wife of a 60-year-old LBD patient who was diagnosed in 2003.


Tue Jul 12, 2011 11:19 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: keeping Dad stimulated?
Pat, Rae, Debry,

To everything there is a season. Who knows your loved ones' seasons better than you do?

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Jul 12, 2011 11:54 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: keeping Dad stimulated?
Debry, I agree with you, trying to keep Frank motivated or engaged is tortured to him, it took me a while to realize but our last trip out I could see how confused and unhappy he was. We just need to find that fine line that MIGHT not be stressful to them.

Take care,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Wed Jul 13, 2011 8:43 am
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Joined: Sat Jun 18, 2011 9:53 pm
Posts: 17
Location: Costa Mesa, CA
Post Re: keeping Dad stimulated?
Thanks for all of your feedback.... I am at least going to look into a couple of daycare programs to see if even twice a week might be beneficial. I also bought a chair exercises DVD and a little electric pedal exerciser that I hope to employ once or twice a week + I want to try to get Dad upstairs for the chair exercises offered at his place (only a video) once a week --- my goal is a minimum of 2 days exercising. Dad refused to go to physical therapy yesterday, tho..... I don't expect to accomplish all of this but hopefully we can settle on some of it and I do hear what you guys are saying about not overdoing things or pushing too hard ....

_________________
Jenna - daughter of Dad diagnosed in 2010 with PD and in 2011 with probable LBD. Symptoms were present for a few years prior. Dad is 74.


Wed Jul 13, 2011 11:22 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: keeping Dad stimulated?
Some of the men at my husband's facility tend to just sit and stare at nothing even in the activity room with people talking and otherwise doing stuff. The women engage, talk, and show their emotions more. But the men do not seem unhappy, will smile and respond to your hello. They seem content--only one gets agitated and says Help, call the police, repeatedly. But he's ok most of the time too. My (non-professional) opinion is to leave them alone.


Wed Jul 13, 2011 12:04 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: keeping Dad stimulated?
I know one thing that really bothers my husband: Chattiness! He has the sweetest physical therapist who is cuter than cute and nice as can be but she chatters nonstop. She realizes it and I have diplomatically told her that he's very sensitive to noise and people talking but she seems unable to control herself. One day she said to him, "I bet you'd like me to just shut up, wouldn't you?' He said, 'YES!'. ;-) None of us is perfect, though, and she's a keeper.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Jul 13, 2011 2:03 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: keeping Dad stimulated?
this conversation is very interesting to me….

I am becoming less tolerant of things being pushed on me…

I am becoming really in tune with MY wishes….

when I don't want to do something…because of the 'cost' to me….I have less reluctance to say no…

sometimes I don't want any outside stimulus…none….I just want to lay and sleep….lay and daydream….sit and daydream…

Pat….(idle chatter) I can't handle idle talk….this was a big stumbling block with my wife….she can talk for hours about nothing…when we met I thought it was cute…it became painful….

I endured the pain for a long time….it became irritating when I asked for it to stop…..

it became unbearable when done to hurt me…to test me…to see if I really am sick….to test if I am in control at that moment….to be answered back with you used to like to hear me talk….I think you are using your disease to hurt me…

I can only speak about how I am experiencing all of this….

I am being continually bombarded with stimulus….my body and mind never rest…it is like torture….NO….it isn't LIKE torture….IT IS TORTURE….

this may be where the selfishness and self centering comes in….I am trying to survive and still try to live your world….but my world is winning….it is overtaking me….

it is irritating to try to process idle chatter….then it is insulting when I expend the effort to try to follow utter nonsense….and then you can't understand that I don't remember what you said a few minutes ago….or you get irratted when I ask you to repeat something ten times….when I am really trying…..

then at that point….I BECOME COMBATIVE? unfortunately yes….

the last few days have been really deep…

then I lose it…I lose control…gone…it is really ugly….a monster…

then I am back….but you aren't…you are really into it now….

but….my torture hasn't stopped during all of this….

please leave me alone….I have more than I can handle…

…………

sometimes it would be better to not understand….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Jul 13, 2011 3:19 pm
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