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Info Seeker
Posts: 4
Registered: ‎11-16-2012

Re: New here, what can you do to keep strong for loved one

Message 1 of 9 (152 Views)

I am Rita Bethany five time i been care give. I am a live in caregive are providet

Frequent Social Butterfly
Posts: 262
Registered: ‎05-04-2011

Re: New here, what can you do to keep strong for loved one

Message 2 of 9 (617 Views)

suzandpej wrote:

I am sole caregiver for my 42 yr. old son.  He is in a wheelchair (Cerebral Palsy) who also has an extremely high I.Q.  I cannot afford a van lift, or a computer that would use a program to help him with his speech.  He is unable to do anything for himself.  Sometimes I do get so burned out I think I cannot take it any longer.  I am 75 years old with lots of back problems and other health problems.  When I feel particularly stressed, I take a minute to take a good look at him and realized he has much greater problems than I have.  I feel very blessed to have him in my life.  We are all alone now and it does get boring and old some days.  We both feel tired (not much of a life!).  But I do pray and try to say and do funny things to keep his spirit up.


Hi Suz,

There's another thread of conversation by a woman who takes care of her mentally ill son, which is very different from having a PHYSICALLY disabled son, but some of the worries are the same, especially, what will happen when you can no longer take care of Pej (i'm guessing that's his name from your user name.)  Here's the link: http://community.aarp.org/t5/Caregiving/Guardian-of-Adult-Child-with-Mental-Illness/m-p/1918082#M410...

 

Have you tried to find things like a hoyer lift from online communities, or your local Goodwill? People donate them sometimes, like they donate all the other things that people need (wheelchairs, bedside commodes, etc.)  I'm guessing he receives SSI?  And therefore had Medicaid? I'm wondering if there is a social worker who is part of your local ADRC: Aging and Disability Resource Center. You can google that phrase and your town or county and give them a call. 

 

Perhaps you already have explored all of this, and please forgive me if i'm mentioning stuff you know. I'm just thinking, there must be some way for you to get some assistance in the home. 

 

Is there anyone else who helps you? do you have a lawyer in the family who can help you both look at your options down the road? 

 

Please tell us more, and thank you so much for sharing your story!

Jane

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Posts: 2
Registered: ‎10-24-2012

Re: New here, what can you do to keep strong for loved one

Message 3 of 9 (636 Views)

I am sole caregiver for my 42 yr. old son.  He is in a wheelchair (Cerebral Palsy) who also has an extremely high I.Q.  I cannot afford a van lift, or a computer that would use a program to help him with his speech.  He is unable to do anything for himself.  Sometimes I do get so burned out I think I cannot take it any longer.  I am 75 years old with lots of back problems and other health problems.  When I feel particularly stressed, I take a minute to take a good look at him and realized he has much greater problems than I have.  I feel very blessed to have him in my life.  We are all alone now and it does get boring and old some days.  We both feel tired (not much of a life!).  But I do pray and try to say and do funny things to keep his spirit up.

Super Social Butterfly
Posts: 700
Registered: ‎01-23-2008

Re: New here, what can you do to keep strong for loved one

Message 4 of 9 (970 Views)

@williamn466607 Hello! Lots of good tips for you here. I find that I have to look at burnout in a very practical way. As caregivers, we all give and give and give - and we see our loved ones are vulnerable and we do what we need to do. But the ongoing stress, mental strain, lack of sleep, emotions, concerns, worry, physical exertion etc etc. do add up and in the end we are just as vulnerable as our loved ones!  So I realize that I have to do things to keep myself going so I can be there for my loved ones (currently my Dad who is 94 and has Alzheimers and lives with me). 

 

I liken it to my car - I went to the gas station on empty one day and was amazed at how much better my car runs on a full tank of gas - I literally did this and then had an aha moment - I realized that I can't expect my car to run efficiently on empty and I can't expect myself to either. It's not selfish - it's practical. 

 

So if you can look at it that way - doing some things to "fill your tank" is just a practical thing you have to do so you can care for your wife as well as possible. It just makes sense. 

 

Find ways to fill your tank - quick things like giving her a hug, having a cup of coffee, talking to a friend, (I do jumping jacks or jump on a trampoline!) etc. 

 

Then premium fill-ups - like going to a movie (or watching one with her), seeing a friend, exercise or golfing, a long walk, etc. Taking a class, going to religious services, doing something creative etc. A break from caregiving.

 

Then think about a tune-up now and then - a vacation, a few days when someone else comes to help your wife, getting out in nature, going to a meaningful place etc. 

 

And don't forget your routine maintenance! Sleep (top priority!), eating healthy, laughing, exercise, doctor appts, etc. I view joy as my biggest tank-filler - what gives you joy? Make sure you experience joy on a daily basis. 

 

Many of these things you can do WITH your wife - and she needs to fill her tank too. Think about what makes your own fuel gauge needle move - and hers!

 

Music is a big help (especially when it comes to exercises and I'm sure she has rehab exercises she needs to do) - music is motivating and makes it fun. I use apps like Pandora to play the kind of music my Dad likes (Big Band, 40's, Bing Crosby etc.). We sing while we walk (and that helps him walk to the beat of the music for a better gait). 

 

Hang in there - your wife is so lucky to have you - so take good care of you so you can continue to be there for her! I've found that I think I'm fine...until I crash! So now I've learned to proactively do things to PREVENT getting to the burnout stage!

 

Take care,

Amy Goyer, AARP's Family & Caregiving Expert

 

140-AARP-Juggling-Life-Work-Caregiving.imgcache.rev1433528415918.web SMALL.jpg

Frequent Social Butterfly
Posts: 262
Registered: ‎05-04-2011

Re: New here, what can you do to keep strong for loved one

Message 5 of 9 (1,323 Views)

williamn466607 wrote:

Hi everyone, I am new here.  I have been the primary caregiver to my darling wife of 59 years since she suffered a hip injury last year and now has a severe lack of mobility.  Obviously it has changed our lives.  I do what I can every day to keep her interested in things we always enjoyed and help her recovery.  I'll be honest, my daughter urged me to use this site for support.  Family and friends do what they can to help, but at the end of the day it is just me and my wife here.  I feel like I am doing OK, but wonder what do other caregivers do for themselves to stay strong and keep yourself going?  What do you do for your loved one to keep them engaged through recovery?  Thanks for sharing any insight.      


Hi William!  I agree with the advice you've gotten: a day off for you is so important. And looking into whatever might be able to help improve her mobility. Finding a support group. Awesome things to implement. You've been together a long time. You are both so lucky. 

 

What do you think would be an ideal situation for you two? Perhaps by enlarging the caregiving circle you can both feel that you are in a 'village' of caregivers, including your daughter, other family, friends, whomever wants to be with her, and perhaps some hired help so you can get a break. Hire someone to clean the bathroom and kitchen twice a month maybe. If you are of modest means, maybe you have grandkids you can press into service? It takes a village to do almost anything, really, and certainly to age with dignity and grace. 

 

Do you want to 'age in place'?  Eventually retire someplace else? Have you talked to a financial planner, geriatric caremanager or eldercare attorney?

 

I don't mean to scare you. :-)   If you two want to stay in the driver's seat of your future plans, it helps to inform yourself. Which you are doing. 

 

A caregiver group in person would be awesome, too. Google 'caregiver support group' and your town or county and see what you can find. You can also start your own if you have the energy and inclination.

 

What do you think of the feedback you've received so far? What would you like to know that you don't?

 

Jane

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Treasured Social Butterfly
Posts: 19,552
Registered: ‎12-25-2011

Re: New here, what can you do to keep strong for loved one

Message 6 of 9 (1,561 Views)

@williamn466607 - Is your wife's current "severe lack of mobility" directly linked to her hip injury .. would more therapy help her recover faster? Have to checked with insurance & organizations in your area, about assistance to which she'd be entitled, to help her, help you around the house, and provide some respite for you?

 

When I was a caregiver - for an elderly aunt who'd moved in with me - I began attending a caregivers' support group, at the local senior center. The group was facilitated by a geriatric social worker, so she also had a wealth of information & experience to share with us.


Registered on Online Community since 2007!
Treasured Social Butterfly
Posts: 19,552
Registered: ‎12-25-2011

Re: New here, what can you do to keep strong for loved one

Message 7 of 9 (1,563 Views)

@deboraj256501 - I think you may not realize you have your "Cap Lock" set your keyboard, because everything is in capital letters, EXCEPT for things we'd normally capitalize .. like "I".


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Registered: ‎09-07-2017

Re: New here, what can you do to keep strong for loved one

Message 8 of 9 (1,571 Views)

HELLO i HOPE YOU ARE HAVING A BLESSED DAY TODAY... rEMEBER YOU HAVE TO TAKE YOU ONE DAY A WEEK FOR YOUR.... VERT IMPORTANTFOR YOUR HEALTH YOU MUST GET AWAYLEAVE HOUSE IF YOU CAN.... IF YOU CANT SOMEONE NEEDS TO BE THERE FOER YOUR WIFE YOU NEED TO BE BY YOURSELF..... MAKE THERAPHY A DAILY THING MAKE IT FUN YOU HAVE TO DO EXCERSIE AND HE DO THERAPHY HOPE THIS HELPS 

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Posts: 1
Registered: ‎09-07-2017

New here, what can you do to keep strong for loved one

Message 9 of 9 (1,591 Views)

Hi everyone, I am new here.  I have been the primary caregiver to my darling wife of 59 years since she suffered a hip injury last year and now has a severe lack of mobility.  Obviously it has changed our lives.  I do what I can every day to keep her interested in things we always enjoyed and help her recovery.  I'll be honest, my daughter urged me to use this site for support.  Family and friends do what they can to help, but at the end of the day it is just me and my wife here.  I feel like I am doing OK, but wonder what do other caregivers do for themselves to stay strong and keep yourself going?  What do you do for your loved one to keep them engaged through recovery?  Thanks for sharing any insight.