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Is helping her actually making her more dependent?
millemann
Posted: Tuesday, August 11, 2020 1:07 AM
Joined: 1/21/2018
Posts: 3


Hello, I am not sure how to ask my question. I used to go to an Alzheimers support group but they had to stop because of the pandemic.So happy to find this forum. I have bben feeling very isolated. My LO is 66 and probably in the early part of stage 6 I think. She has had a diificult time all along with accepting that she can't do the things that she used to. She was an executive in large corporation for most of her career and now with dementia needs help for most things. Lately, she will just sit on the edge of her chair in the living room and look like she is waiting for a bus. Because she is unable to turn the tv on or change channels she will just sit quitely and stare at the blank tv screen and not say anything for extended periods of time. I try to keep her busy with activities she can do like folding clothes or dusting, listening to music, going for walks watach old movies etc. She does not seem to know how to find something to do on her own. She follows me around from room to room. She gets very anxious if doesn't know where I am in the house. I now spend literally all my time with her. I am wondering if she is beginning to be like her mother who had alzheimers when at certain point she would just sit and stare day after day. I keep struggling trying to find ways to keep her engaged. I am also wondering if my doing things for her all the time it is causing her to forget how to initiate activities on her own. Should I let her have time where she is just sitting with blank look staring in front of her? My apologies if this doesn't make much sense. I think I am desperately trying to keep her "here" and not have her "disappear." Any thoughts you might have I would appreciate. Thank you and I am so very sorry that you all are dealing with this disease as well. 

 

 


Michael Ellenbogen
Posted: Tuesday, August 11, 2020 6:58 AM
Joined: 11/30/2011
Posts: 3409


That’s a tough question to answer. I think you need to figure out a new way to communicate with here. Sometimes we need the downtime and other times we don’t. 


Gumball
Posted: Tuesday, August 11, 2020 7:34 AM
Joined: 6/19/2020
Posts: 5


You're making perfect sense   I'm so sorry for what you're going through, especially considering how young your LO is as well.  I think you're doing so many wonderful things to help her stay active and engaged, but sadly you can only do so much.  As long as your LO is safe, there will be times when you may have to let her sit for a while - since I'm sure you've got things to do yourself.  Maybe during those times you could play music she enjoys?  Or put a TV show on you know she used to enjoy.  One of the things we do for my mom quite often is buy her flowers and allow her to arrange them in a lot of vases.  Sometimes she'll arrange them a couple times a day. 

If your LO behaviors are following the normal stages of disease progression, then I doubt your efforts are causing her to become more dependent - it's just becoming harder to keep her engaged.  Of course you can always check in with her doctor.  

You're doing so much to help her, just remember to go easy on yourself too.  If possible, it may help to get some time away from care giving.  You must take care of yourself!  

You're not alone on this forum!

 


Stuck in the middle
Posted: Tuesday, August 11, 2020 10:02 AM
Joined: 6/4/2017
Posts: 641


I, too, doubt your help is making her more dependent.  This summer, it seems that I discover every few weeks that another thing has slipped from my wife's grasp.  She can no longer manage the seven or eight steps required to make iced tea with an electric iced tea maker, although she has done it for many years and actually wore out two or three of the machines.  She didn't stop making tea because I started doing it, I started doing it because she can't do it.  I think your LO is probably the same.
SeanCA
Posted: Tuesday, August 11, 2020 10:04 AM
Joined: 8/7/2020
Posts: 3


Oh, my, I'm feeling the same way and empathize with your struggles and fears. My FIL just moved in with us from Texas to Washington. My husband and I just married in February after being together less than one year and did not know him except having met him once before he moved here, so I'm struggling on many fronts. I began working from home once COVID started, so I'm his daytime caregiver. I have all those same questions about initiating activity and dependence. He was waited most all his life, so I'm not sure if his not initiating anything for himself is dementia-related or adjusting to living with someone. I feel like a new mom without the joys of motherhood and I'm 53. I just initiated contact with Comfort Keepers to see if I can get in-home care some days.
SeanCA
Posted: Tuesday, August 11, 2020 10:05 AM
Joined: 8/7/2020
Posts: 3


I appreciate this response as it speaks to my struggles as well. Thank you.
Beachfan
Posted: Tuesday, August 11, 2020 10:25 AM
Joined: 2/1/2018
Posts: 536


There is a very informative 27 page article, “Understanding the Dementia Experience”, by Jennifer Ghent Fuller that may be helpful in addressing this. (I am sorry, I don’t know how  to provide a link; Ed, please help.) There is a section on “apathy” as it applies to Alz/dementia patients.  Basically, the part of the brain that controls initiative and the ability to self initiate is damaged, and inactivity and sitting quietly for long periods of time are to be expected and not to cause worry.  I hope you can access this article.

My DH is well into stage 6.  He sleeps soundly all night (sometimes 10-12 hours) and still sits quietly during the day for hours at a time.  He is no longer able to self initiate and is not interested in anything that I might suggest.  In the afternoon, he will rally and pace around, talking gibberish to objects and non existent people.  If I take him out and about to break up the monotony and hopefully provide some stimulation, he tires easily and it becomes a chore to get from point A to point B.  I am sorry you are having to deal with this. 


millemann
Posted: Tuesday, August 11, 2020 10:31 AM
Joined: 1/21/2018
Posts: 3


Thank you Michael. I really appreciate your perspective.
SunnyBeBe
Posted: Tuesday, August 11, 2020 11:29 AM
Joined: 10/9/2014
Posts: 1148


I've always read and heard that the PWD should keep engaged with activities as long as possible.  But, despite that, the progression still happens, regardless.  It was difficult for me to imagine that it would eventually happen with my LO, but, it did.  My LO was 62 when it began. And, I do think it's particularly cruel when it strikes so early.  

As far as keeping her from disappearing....I just tried to focus on touch, voice, music, and scent.  I would take her favorite body spray and ask her if I could put a little on her neck and wrists.  Most of the time, she's nod and I knew what that meant. She liked the cool feel of it and the faint smell.  I can't do most of those things now due to covid.  So, I'm trying to improvise by sending her a sound machine. It plays nature sounds.  I hope it will get through in some way. She is now non-verbal and mostly unaware of her surroundings. 

For me, I choose to believe that there is always a place in her subconscious that senses my presence, love and energy. I dream of her often and even believe we may communicate that way.  I know it sounds crazy, but, it works for me. 


SeanCA
Posted: Tuesday, August 11, 2020 11:59 AM
Joined: 8/7/2020
Posts: 3


Thank you, Beachfan! I will look at that article. Your comments are helpful as are yours, SunnyBeBe! This is my first day on this forum, or any for that matter. I broke yesterday and just went to the park alone with our dog and cried. This forum gives me hope and validation that my experience is not mine alone. I'm tearful as I write this. Thankful for support, even if only virtually! SunnyBeBe, what a wonderful caregiver you are! Just the littlest things are what makes life a joy, even for those who are slipping away. Thank you and may you all feel a little lighter today and loved in all you do.
gubblebumm
Posted: Tuesday, August 11, 2020 12:15 PM
Joined: 7/12/2017
Posts: 1745


Its okay if she zones....it doesn't do any harm and it give you a break.  My mom will watch tv, she's 82, she gets out everyday for hour and a half walk, she reads the paper, and sometimes I just catch her sitting and staring while in the back yard.

She is fine, ,we don't have to be busy all the time, I tried all the art stuff, etc, eh, she wasn't interested, this is where she is


mommyandme
Posted: Tuesday, August 11, 2020 2:44 PM
Joined: 2/16/2020
Posts: 33


http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

Here’s the link. It’s a very helpful article indeed


millemann
Posted: Tuesday, August 11, 2020 3:07 PM
Joined: 1/21/2018
Posts: 3


Thank you everyone for responding to my asking for help! I was actually thinking my concern was so random that no one would respond.  Each kind response has something that is quite helpful and I don't feel so isolated now. I also looked at the website and read about "apathy" and it really explained it very well. I can't tell you how much I appreciate it-such a resourse.