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

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Message 1 of 11

@PatriciaO902498wrote:

Hi my husband has MS. I am the one that takes care of him. He still works, the company he works for is wonderful. They set him up at home with all the computers and phones he needs. He is a lighting designer. He is also only 47 and I’m 61 so I stopped working to be able to do whatever he needs. But it’s exhausting and he has 3 siblings that don’t help out much. I have 4 siblings and 3 brother-in- laws who help me out all the time. They all have very busy lives as do his siblings but if they could help us more if would help us tremendously. Our house is old and my family is the ones that help with things that need to be fixed. My husband and his siblings grew up in this house and they know it so well so I feel it would be easier for them. So that’s my main issue at this point. Thanks! 


Hi Patricia!  If i had a dollar for every post that mentioned unhelpful relatives... i could retire!

 

It sure is a trick to leverage people into helping. Everyone has an excuse, and 'busy' is the most common one. I have a few ideas to brainstorm, and who knows what will work, if any of them. But you can see if any make sense and seem realistic. Please write back and tell us more of what you're thinking. 

 

My partner is 12 years older than I am, and she too has MS. She has a very slowly progressing kind, however, and she's healthier at 70 than i am at 58 because i have diabetes. MS is scary, so i get that, and the age difference is irrelevant but i get that too.

 

So, his siblings. When you talk to your husband about their (lack of) involvement, what does he say? Does he want them to be more helpful, any of them in particular? Are they resentful that he got the house they grew up in? Families can be endlessly petty about favoritism and 'fairness.' Is there one of the family who is the closest to you both that you could start with? Like, hey there, George, come over for dinner... and then talk about the imbalance of who's helping?

 

And what kind of help do you and he need? Have you ever heard of Lotsahelpinghands.com?  It is a remarkable free tool that you can use to organize the help you have, and recruit folks to help with other stuff. People sign up, and then one or two people keep it organized. He needs a ride to an appointment on such and such a day? Put out the word and a ride gets identified. The driver's car breaks down? She puts the word out on the community you've set up and a substitute volunteers. It keeps the tasks manageable and specific. People might not think they can 'help' but almost anyone can make a casserole and deliver. (Who get a bucket of KFC, for pete's sake.)

 

Do your two families get along? Could you invite everyone over for a party/ gathering/ fun event, and start a conversation about taking turns and chipping in?  I don't mean that you'd want to trick them,... but... Free food will often get people to come and then, without a guilt trip, just update everyone...

 

Is there a church community that you are part of? (A temple, a mosque). Do those folks chip  in, too? 

Is there a respite care program in your county? The relatives of your husband might want to know that you've looked into all the other options before they take on more for him than they're used to.

Also, are there are other folks in the extended families who need help, too? Perhaps if there are and you include those concerns in your 'family meeting'/ fun gathering, folks won't feel you are begging. I bet there is an elderly relative on someone's list of concerns, or a special needs kid. Think in a wider more inclusive way, and the family will be grateful. The entire family. 

 

Do you and your husband have an attorney or CPA who have figured out your own finances? He's working, you are not. Is there enough savings and equity and assets to take care of you both, in the long run?  And... can you afford a housecleaner every couple of weeks? Of all the tasks that need doing, scrubbing the toilet generally falls in the 'least favorite' category.

 

I'm just throwing out ideas. What do you think? Please write some more. I'm just guessing.

 

Thanks for writing, though. I can relate to your situation very much!

 

Jane

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

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Message 2 of 11

Hi my husband has MS. I am the one that takes care of him. He still works, the company he works for is wonderful. They set him up at home with all the computers and phones he needs. He is a lighting designer. He is also only 47 and I’m 61 so I stopped working to be able to do whatever he needs. But it’s exhausting and he has 3 siblings that don’t help out much. I have 4 siblings and 3 brother-in- laws who help me out all the time. They all have very busy lives as do his siblings but if they could help us more if would help us tremendously. Our house is old and my family is the ones that help with things that need to be fixed. My husband and his siblings grew up in this house and they know it so well so I feel it would be easier for them. So that’s my main issue at this point. Thanks! 

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

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Message 3 of 11

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

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

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Message 4 of 11

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

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Message 5 of 11

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.

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

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Message 6 of 11

@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

 

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

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Message 7 of 11

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

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Message 8 of 11

@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.


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

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Message 9 of 11

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

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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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