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Frustration and coping tools
Posted: Sunday, May 12, 2019 9:11 AM
Joined: 2/20/2017
Posts: 17

Good morning and Happy Mother's Day to all of the moms out there!

My husband and I brought my dad to live with us over 3 years ago. He has moderate dementia, along with other health issues.  He has hearing loss and word recognition problems on top of it. He obsesses a lot,  especially over numbers (his weight, the calendar, etc) and of late has developed some anxieties (which will be addressed at doctor visit this week). We help him stay on a daily schedule, and have an aide come in during the weekdays so that I can continue to work.

I would like to hear how others deal with the frustration aspect of being a caregiver. I have read up a lot on alzheimers/dementia and most of the time I can roll with whatever is coming my way (accepting the repetitions, saying yes and putting positive spins on responses, being creative, etc), but there are many times I get "caught in the vortex", as my husband and I call it, and I am the one ending up agitated by it. While I am learning to walk away, not engage, breathe, take breaks, and/or change topics, I'm curious to hear what others do to cope. 

Thank you!


caregiving daughter
Posted: Sunday, May 12, 2019 11:56 AM
Joined: 11/27/2012
Posts: 2008

Sounds trivial but make sure you are keeping in mind the nutrition, nature, meditation, and physical exercise for caregivers. Youtube videos on meditation go a long way.
Posted: Sunday, May 12, 2019 8:07 PM
Joined: 5/5/2019
Posts: 8

I could have written your post. My DW of 52 years is now in mid stages and sometimes I am driven to distraction. I don’t think there are any tricks other than what you have suggested. I have tried to do all those things. I have read lots, talked to knowledgeable people, but still often emotions trump what you know rationally you should be doing. I am now seeking more respite help and realize I just can’t do it 24/7 like I have for the last 7 years. She has become a different person and dealing with angry agitated behavior is more than what I can cope with when I am at the same time grieving the loss of the person with whom I have shared my life. It is so ironic because I find myself wishing I could  talk to her about what I am going through because she was always my rock. So rather than try this or that recommended technique, I realize that time away to recover is what I need. So I am reaching out for respite assistance, seeking out support group advice and not trying to do it on my own. Maybe you and your husband need to recognize the need you have for respite help or daycare programs to give you some time to build back your personal reserves.
Posted: Monday, May 13, 2019 9:52 AM
Joined: 2/16/2019
Posts: 40

Support group and/or therapist. It helps to talk to someone outside the family. Support groups (run by a social worker often) are understanding. Some therapists get it and some don't.

I do Tai Chi and one art class a week. No magic but it helps. 

 Do you have outside assistance coming in at all? Getting an aide to come in for a few hours might help.

Mimi S.
Posted: Monday, May 13, 2019 11:38 AM
Joined: 11/29/2011
Posts: 7037

Welcome to our world shw. I'm so glad you found our site.

Support grpups ad counselling are great. Be sure you see a counsellor who is knowledgeable about dementia. your local Alz. Assoc. office should have some referrals.

Do watch Teepa Snow videos. There are lots.n From your library ask for a book by Feil with the word Validation in the title. It's not an easy read, but well worth using her Method. 

And do get respite for yourself. Sometimes opting for a weekend or week in respite care gives you a chance to relax and also help you decide if this would be a good place for the future. 

Posted: Tuesday, May 14, 2019 7:35 AM
Joined: 2/20/2017
Posts: 17

It is a very good point, CD, and I think that lack of my own physical care at times is fueling the frustrations. Thank you!
Posted: Tuesday, May 14, 2019 7:36 AM
Joined: 2/20/2017
Posts: 17

Ernie I am so sorry to hear about your wife. My limited experiences on here have all been positive, so you are in the right spot!
Posted: Tuesday, May 14, 2019 7:37 AM
Joined: 2/20/2017
Posts: 17

Windyshores, thank you - our aides come in during the day so that I can work. I think we need to look at using aides to take some time off for ourselves.
Posted: Tuesday, May 14, 2019 7:40 AM
Joined: 2/20/2017
Posts: 17

Thank you for the resources, Mimi! Am I responding correctly (hit reply to each post) or should I just make a general post? We have looked into short-term respite, but the minimum stay for folks in respite care around here is 2 weeks. I'm worried that he will slip further away, as he does every time he's been hospitalized. While he bounces back, he never comes back 100%.  From what I read, that is typical.
Posted: Tuesday, May 14, 2019 10:47 AM
Joined: 7/12/2017
Posts: 1068

and good enough is good enough...shelter, warm dry home, food, water, that if mom had a day at home watching tv and "reading" and painting, that's actually not a bad way to spend her day, and its good enough (she lives with us as well)

And if I get frustrated and snap at her, I apologize and move on, and remember that I matter too, that I am not a robot, and doing what I can is all I can do...

for instance, I am visting my daughter, and mom will be home with my other daughter for four days, mom won't leave house with anyone but me, well that's fine, she is sheltered, and if she is bored, can't help that, if she sleeps alot, that's okay too, its good enough

Eric L
Posted: Tuesday, May 14, 2019 11:41 AM
Joined: 12/5/2014
Posts: 956

Shw - I used to call it "going down the rabbit hole" with my MIL. All of us (my wife, her brother, and myself) were caught in it at some point or another. We've all caught ourselves getting upset with MIL even though we know better. We do our best, but sometimes our best just kind of lets us down.
Posted: Wednesday, May 15, 2019 5:45 AM
Joined: 4/3/2019
Posts: 61

I literally have to schedule "me" time- whatever it is.  Last night I decided I was going to turn off the ringer on my phone, not answer any emails for the rest of the evening (I get so many, all the time for work), make myself dinner and catch up on some TV shows.  Sounds basic, but it helps. 

Also in general, hiking or walking on the beach, yoga and self care (little things like taking an hour to give myself a manicure).  

Being real with my friends really helps.  I had kept this all bottled up inside until a few months ago and then I finally shared with my friends . . . and guess what, at least two of them are in similar sitations as me, and are as tired/stressed/frustrated as me.  

One every month or so I try to find a new hiking place and take my dog. 



Posted: Saturday, May 18, 2019 10:46 AM
Joined: 2/20/2017
Posts: 17

Thank you for that - have to remember that I can only do so much. We aim to keep him as safe as possible, and do our best with keeping him engaged.

The delusions have been getting worse, especially mornings and evenings. I may need to figure out some additional morning support so that I can get to work on time and still have time to "talk him off the ledge"... so sad.

Posted: Saturday, May 18, 2019 10:47 AM
Joined: 2/20/2017
Posts: 17

Walking and hiking are great! Hubby and I are going to sneak out for more walks.
Thanks for the suggestion.

Posted: Saturday, May 18, 2019 10:48 AM
Joined: 2/20/2017
Posts: 17

Thanks, Eric L - a good reminder not to beat ourselves up when things don't go as well as hoped.
Posted: Wednesday, May 22, 2019 12:31 PM
Joined: 10/19/2018
Posts: 2

We are in a similar situation with my mother in law. She moved in with us 1 1/2 years ago. We also have a child in high school and 1 in college. Talk about being sandwiched! We take time for self-care, too. But, I still lose patience and get frustrated. I'm considering joining a support group or going to therapy.
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