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 Meaningful fun life with Dementia - suggestions? 
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Meaningful fun life with Dementia - suggestions?
Hello Everyone:

My mother was all angry about her life today and that it isn't fun or meaningful. I must admit it is hard for my sister and myself to have our own lives and constantly keep her entertained (but that is what she wants). She complains when we aren't at her ALF and talks about how she is living someplace where people are dumped and no one cares about them and she feels that she is a burden and that we don't love her etc. etc. I realize that in part she is working hard to manipulate us and in part she is frustrated with how few options she now sees for her life. I get that because I would possibly feel the same way. She doesn't make friends easily and she has very high expectations for the rest of her life - wants to travel etc. (but can't be an hour away from home without a panic attack). She cycles extremely - she is essentially capable of different things at different times of the day and of the year as well. Thoughts on how all of you out there are making life fun and engaging for yourselves (if you have DLB) or for your loved ones (if you are the caregivers). I am interested in figuring out how to help my mother find meaning in her life and accommodate the massive fluctuations in her abilities (both physical and mental).

Thanks for any thoughts that you have. Liz


Mon Apr 16, 2012 4:40 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Meaningful fun life with Dementia - suggestions?
Does she participate in any of the activities sponsored by the ALF? Would she be able to?

What does she consider fun? Playing cards? Touring a museum? Dancing? Photography?

How much time to do you want to devote to activities with her?

Lots of questions; not so many answers.

I try to continue to do things with Coy that he has always enjoyed, but on a more limited, scaled-back basis. We haven't spent 3 days in Chicago museums in years, but we spend half-days in local museums once in a while. I'm trying to do at least a couple of "field trips" with him a month. Concerts and plays are still options, but we always know we may have to give away the tickets at the last moment. Still it is worth it.

Two of my elderly aunts dictated their life stories (highlights, we are not talking 300 page autobiographies) to their daughters. One dear aunt played spoons in the senior center band for many years, including after she developed dementia. My mother does several crossword puzzles a day, and beats anyone she can coerce into a game of cribbage.

It is especially hard, isn't it, when abilities fluctuate so frequently? With Coy, he seems to be able to ususally pull it together (showtime, maybe) for planned events.

Let us know what works for you. This is a very interesting topic to those whose loved ones' dementia is not yet too advanced.

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


Mon Apr 16, 2012 5:59 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Meaningful fun life with Dementia - suggestions?
Liz,
There are lots of people out there who specialize in helping people find meaning in their lives! Some are available as volunteers, some are paid professionals. I suggest contacting both the local Alzheimer's Association chapter and the local senior center about a list of resources. One easy-to-explain example is there's a gentleman in our local area who specializes in helping those with dementia write poetry.
Robin


Mon Apr 16, 2012 6:39 pm
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Joined: Sat Sep 03, 2011 2:36 pm
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Post Re: Meaningful fun life with Dementia - suggestions?
Hi - this is a really frustrating issue and something I've been thinking about for a long time. I tried all sorts of things with my Dad while he was alive and had some success. Eventually he didn't want to do much except for his delusional activities (he kept pretty busy in his other world) but watching sports was always enjoyable. Making items that are useful, becoming involved in group projects (choir, art projects, "garage" sales, writing) and playing games seems to be a good starting point. My Dad loved sticker books, making inventory of things, organizing his stuff. Maybe your Mom would be interested in organizing photo albums or scrap books, making a list of family recipes, collecting stories about her childhood. A digital voice recorder or audio books might be fun. Trips to the zoo or to conservatory, plants or indoor gardening might be interesting. You might want to talk to the recreational director or if your mom is a member of a church, talk to the church to see if there is anything that would be appropriate. Senior activities, even for people without dementia, is an unexplored resource in my opinion.


Tue Apr 17, 2012 10:59 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Meaningful fun life with Dementia - suggestions?
Thanks for the many tips. I think getting my mother engaged in things that she can do and yet also allow her to be flexible when it comes to her commitment to these things is going to be important for her. We need to figure out how to help her feel like she is living a "real life" and not a "nursing home life." She is not wanting to "accept" her life as it is and I understand that. I don't know that I would feel differently, I don't know how to help her balance the reality of her health and cognitive situation with her desire to see herself as a woman in her 30s or 40s with infinite possibilities (well sometimes she is like this). She is angry that she has saved money for her "golden years" to travel and go to the opera and enjoy life - and she is having to use it for ALF care. I understand that - but I hate being the brunt of her anger. I can't change it. Sometimes she gets very aggressive and accuses us of putting her away because we don't really want her and tells us that she is going to leave and go off and "Auntie Mame" the world. Other times, like today, she tells me how I have such unrealistic expectations for her - that she can't do the things she used to do and that she isn't likely to travel again and that WE are pushing her to do more than she is capable of doing. I have no idea how to make things better for her and she clearly expects us to do that and is angry when we don't. I just keep thinking that if she was engaged in work that she could still do and found meaningful, we would all be a lot happier. We had her scrap booking for awhile and I realized that looking at old pictures and reviewing her life was causing her a great deal of anxiety and pain. She doesn't like looking at her life as if the best of it is behind her. One night she got up in the middle of the night and ripped up all of the old family photos that she had in the room to scrap book with. She doesn't remember doing it - but I think her night antics often reflect things that her mind is anxious over on a sub conscious level. Anyway - thanks for your thoughts. I need to ask my sister what the facility does and does not offer. I would like to see my mother organize a book group or something. Anyway - thanks for your insights.

Liz


Wed Apr 18, 2012 10:11 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Meaningful fun life with Dementia - suggestions?
Liz, I loved the 'Auntie Mame' reference! :P As Mame said, 'The world is a banquet and most poor suckers are starving to death!'. She feels cheated from her adventures.

If she loves opera, does she have some opera CDs? I know that listening to La Boheme transports me. Does she like to watch travel programs on TV?

She will learn where your 'weak buttons' are and push them whenever she wants to make you feel guilty. It's hard not to be swept in but be aware that her sphere of control is shrinking daily and she is using what tools she can still wield.

God bless you for caring. It's a very tough road to travel.

_________________
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 Apr 18, 2012 10:38 am
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Joined: Fri Oct 28, 2011 1:31 pm
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Post Re: Meaningful fun life with Dementia - suggestions?
Up until this year, my mother is very sick, I had a similar situation. I am an only child, married with two children. I could not be there everyday, but I tried to give her things to look forward to. One of her favorite things to do was to go to the movies. I don't know how that would work for your mother, but for my mom it was great. I would make sure that she would have her medicines right before we went that way she would not have an off time during the movie. She would go to the bathroom before the movie, we would get her a small popcorn and drink and she would sit for the entire movie. Sometimes she would nod off or be confused as to who was who in the movie, but she still enjoyed the experience. It was so much easier for me to do that than to take her to walmart or publix where she liked to ride the scooters. I don't know how many people she almost ran over with the scooters. Also, she liked to get burger king and go to the park and sit at the picnic tables. We did take her to my son's soccer game and she asked if she could lay on the ground. I just had to say, "no", to that, and even though she really didn't watch, she was able to tell the women at the ALF how great her grandson played.

Although I was not there everyday (2-3 times per week), I tried to give her things to look forward to. We tried to include her in all holidays. She would come to our house and color eggs or watch christmas movies. Just coming to our house was fun for her. I would do her laundry and the whole family would watch a movie together. I think that having something to look forward to really made the difference for her. We even went to the beach. The whole planning period kept her spirits up for months. Hope this helps.


Thu Apr 19, 2012 9:51 am
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Joined: Wed Mar 02, 2011 1:04 pm
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Post Re: Meaningful fun life with Dementia - suggestions?
Hello aelisabeth,

I appreciate this thread....When there is not a crisis of some type going on - I find I am struggling to find ways to make my days meaningful.....I have just gone through disability retirement - but was only working (barely) part-time before....but now that it's final I do feel angry about what I have lost....some days I feel really angry at the disease.....I am not much fun to be around those days....

Other days, I try not to get stuck in bitterness - One way I can do that is to have something meaningful in my day.....It lifts my spirits if I can feel like I did something good even if it was for 10 minutes or a small thing.....After my dx just over a year ago, I joined my church choir and I still do that....That one thing may have helped keep me grounded this past year.....I am thinking of adding piano lessons - I played for 10 years growing up and can still play some things so I don't think it would be like trying to learn something new which I think would be too much.....

I've read that creativity is spared in LBD, and I am finding that creative endeavors are much easier for me than my prior math/science career....Fortunately I love music and the arts so my plan is to develop those things.....I also am considering a photography class.....

I used to dance ballet for over 30 years.....More than anything I'd love to dance again but fatigue is a huge problem for me but I haven't given up hope of doing it in a modified way again.....I think dancing - maybe ballroom type would be enjoyable for those who are able - has the benefits of endorphin release too.....

I would be willing to learn painting/art too.....If I could just find the energy for these things...I do enjoy movies/documentaries......watching ballets....Think I'd like plays and musicals too....

Just my thoughts.....

Best wishes,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Thu May 03, 2012 7:36 pm
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Joined: Tue Aug 30, 2011 1:42 pm
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Post Re: Meaningful fun life with Dementia - suggestions?
Thank you folks for all of the wonderful and thoughtful remarks! For us, the struggle is how to get her the sort of wonderful things that Tonya is after and handle the fact that she is not consistent in her abilities, moods, even personality. It is so frustrating. I know all of you are also dealing with similar things. Tonya - you are amazing! I feel so much for you (you are my age in fact). I think you have a remarkable enthusiasm for life and I hope that we can all follow your example. Because of my mother's age and her disease (and her cycling) it has been really hard to know when an opera or a concert would work and when it wouldn't. She talks about how meaningless her life is and we try to get her engaged in things, but then she starts screaming at a movie theater or insisting that we leave one of our kid's recitals that she insisted on coming to. It is so hard to figure out how to give her those things in life that have meaning and make them work for her. It is also true that she wants to be engaged in meaningful tasks, but she also seems to have lost the interest she used to have in most activities (except for shopping). This makes it hard to figure out how to respond to her complaints. I think there is part of her that believes that if she could leave assisted living and live with one of us, or on her own, or even return to her ex-husband who was being abusive to her, that she could all of a sudden participate in meaningful activities again. I don't see how this could work (it didn't work before), but that does seem to be what she believes. Good luck to everyone! This is a difficult disease to juggle and your support and information and ideas is essential to me.

Liz


Sat May 05, 2012 12:04 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Meaningful fun life with Dementia - suggestions?
Thanks for your kind words - I do have my bad attitude days definitely......but I keep trying....I also have mood swings....The doc has given me zyprexa for them and it helps a lot, but it's not for everyone and I think seroquel might be preferred over it.....

Because of my fluctuating moods and my fatigue, I have more success doing things at the last second...which makes it hard to plan things but it's more likely to happen if I am having a good afternoon then we go out to eat then......I have been able to make it regularly to church to sing but I haven't always been in a good mood when I go....I can relate to your Mother's feeling about her life...it's very frustrating....I feel the same way many days....But I just try not to get stuck there....

So maybe when she's having a good afternoon that is the time to try a movie - if you are able to be that flexible with your schedule.....I am very lucky my husband's job is very flexible time-wise so we can do things when I am feeling up to it.....

I also find it frustrating to try brand new things....the music is something I did in the past so it's not as hard to pick it up again.....I find it easier to "revive" old activities than to try to learn brand new things - although I don't mind trying - I do end up frustrated.....There's a lot of anger and frustration with this disease and a sense of loss over the things I can no longer do.....

But I keep at it...my meds really help my quality of life too....I take aricept, nameda, sinemet, and zyprexa and clonazepam for anxiety and RBD.

I hope your Mom can find something that will give her days more meaning.....being around people in some way (for me choir) usually lifts my spirits - there are a lot of times I don't feel like being social but I always feel better afterwards.....

You are a wonderful daughter! I often think this is harder for the family members......

Take care,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sat May 05, 2012 12:35 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: Meaningful fun life with Dementia - suggestions?
Liz, you are a wonderful daughter and you are seeking something that can help your mom because you love her in spite of feeling hurt by her words and actions. My hat is off to you for that generosity of spirit!
Since I do not know your mom, this idea may be not suited to her, but here goes. Is there a source, like a church or some group that she could relate to, that might provide a list of folks who are homebound or who have some need that your mom could fulfill in some way during her alert and energetic times? Could she use some of those scrapbooking supplies to create cards that could be addressed to someone who is hurting with a very short note inside from your mom? That would give her a creative task with the focus on someone else who would benefit from her work.
When you visit, you could collect the ones she has made and mail them for her. That might give you both something else to discuss that is more positive and productive and she could feel that she is making a difference in someone's life by her efforts.
Sometimes the key to moving beyond our own misery is reach out to someone else who is hurting as well. Might that work for her in her good moments?
Just an idea....
Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat May 05, 2012 11:03 pm
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Joined: Tue Aug 30, 2011 1:42 pm
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Post Re: Meaningful fun life with Dementia - suggestions?
Pat -

That is a very smart and creative idea. My mother has always had trouble getting "out of herself" and focusing on others. I have often felt that if she could do that, she would suffer so much less. She has tons of scrap booking supplies already. I think this idea is brilliant. The only problem will be getting her connected with a community of people via a church. She is currently living closer to my sister, she was near me but there are no ALF that are willing to take her near me anymore and she does not feel that she is "ready" for a nursing home facility, and so my sister would have to connect her with a church community and my sister is not likely to do that. I will see what I can do to arrange something the next time I am in Michigan with her.

Thanks for the idea!

Liz


Sun May 06, 2012 1:30 pm
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Joined: Wed Mar 02, 2011 1:04 pm
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Post Re: Meaningful fun life with Dementia - suggestions?
Liz,
Maybe even people who are already in a nursing home would benefit from the cards? Or VA hospital - or just the hospital - this way she wouldn't have to be connected with any particular group....The card making idea is a great one Pat! Maybe I will try that too.... :) Thanks!

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sun May 06, 2012 2:23 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: Meaningful fun life with Dementia - suggestions?
Right, Tonya. The key would be to find someone(s) who might need a bright moment in their day that a handmade card would provide.
Liz, maybe your sister knows someone in her circle of acquaintances who would benefit from a card... to get the ball rolling with your mom. It doesn't have to be with an organized group, and the nursing home or hospital idea is a good one, too.
If there are grandchildren or others in your extended family, they could be recipients, too. That way your mom would be leaving concrete reminders of her talents and her love as part of her legacy. Those cards would be keepsakes. She could use them to say all the things she always wanted to say to that loved one in her family.
Hugs,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun May 06, 2012 3:25 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Meaningful fun life with Dementia - suggestions?
Aren't there organizations that send packages to service men and women? Perhaps cards would be appropriate in those packages.

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


Sun May 06, 2012 6:17 pm
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