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Info Seeker

Re: Is anyone taking care of a spouse?

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Message 1 of 278

 Hello Linda 

 I am writing you to let you know I understand how you feel. My wife has had three strokes and one seizure over the past 18 months she had the surgery to fix the issue which was a brain bypass surgery . Her condition was a rare condition called moyamoya. This condition has left her paralyzed on both sides and bed ridden.  Everything that you said including friends family kids all of that I am experiencing as well we went from an active lifestyle and a successful business and a home with a pool down to nothing .   Due to the surgery on my wife I have not heard her voice since January of this year. I miss that conversation. My wife now is stable and her condition with the exception of her cognitive thought process is still disrupted . I agree that it is very hard and painful and lonely my wife and I have been together for 27 years and this is the most devastating thing that has happened to our relationship.   But I pray for my wife every day and I ask God to restore what she lost and I am courage her every day I see her every day I do everything I can for her every day and still try to work it's not easy all I can say is remember the love that brought you two together and let that be the thing  that continues to lead  and guide you through all of this and that is where you can draw your strength. If you want to reach out directly my email is stmorlando@gmail.com

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Re: Is anyone taking care of a spouse?

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Message 2 of 278

Well it has been some time since I have posted here we moved from our roach infested duplex to a nice 3b 1bth house husbands attitude got no better neither did his drinking, then between April & May of this year it's been back & forth to hospital with husband leaving ama on last they drained 7 liters of fluid from belly he had an infection of gallbladder, he stayed till they released him and has been sober since June 1st nearly 3 months if he goes back to drinking he will die and it will not be pretty,  yes I am scared, 

and am very sad because he has 3 Grand daughters one of which he has never met or held and may

never will, he used to tell me he loved me more than life and all I can think is how can he say that and drink away his health his life our relationship our life together no you loved alcohol more than life and me, and what am I going to do when he is gone all of this breaks my heart to tears I cry myself to sleep every night, no there is no life insurance, to ad to all this his 20 year recovering meth head old son is now living with us, lays around sleeping all day will not wash a dish after using it and reuse it will not get on his bike and go look for work has supposedly refiled for social security disability benefits but last time he was here he was supposed to go for an eval and he blew it off thinks he won't have to go for another one I got bad news for him, he has also supposedly filed for snap, his dad won't call him out on his laziness I think he is afraid if he does his son will run off and get high on meth I feel like we are being held hostage by David it's not fair, I bring food stufds home from work and it's always give it to David I brought it home for me, and then I may not have a job come October as my company lost the Walmart sampling events contract to AMS for the last year they have shared the contract so that AMS could have time to hire their own people oct that agreement ends and I have not received a recrutment call from either side, if husband dies his SSD benefits go with him I will need that job, 

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Silver Conversationalist

Re: Is anyone taking care of a spouse?

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Message 3 of 278

Dear Friends,

 

     This has been a great discussion thread with lots of heartfelt stories and advice. I wanted to share my AARP.org column from a few weeks ago (please see link below) that also speaks to the anguish of spousal caregivers. I would be interested in hearing your thoughts. Take care, Barry Jacobs, co-author of AARP Meditations for Caregivers.

 

http://www.aarp.org/home-family/caregiving/info-2017/spousal-caregiving-divorce-fd.html

 

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Re: YES: Is anyone taking care of a spouse?

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Message 4 of 278

b482586c wrote:

Good Evening Linda,

i thank you for the morning greeting & I felt like I had a visitor.

i am sorry you lost the love of your life.

i am told I need to put my hubby in a facility but he is my life & although it is harder at times, without him, I would be more alone then I am now.

he can't talk but mumbles but I hear his sweet voice every morning mumbling.

by him is a teddy bear he gave me back in the 80's & he will talk to him or he sits him in different places on the bed or even the other morning, he had it sitting on window sill which is at his bed.

 

he usually is awake for couple hours in the morning but after that he just sleeps.

awakens for lunch & dinner .

 

i work doing things like yesterday, painting the wheel chair ramp platform, today it was patching concrete edge up to it.

 

we volunteered at our senior center for 16 years til this happenedtge centers are great as the folks there share in your life as we all have so much in common & they mainly contain widows.

 

i still volunteer by running the Food Bank programs on 1sr & 3rd Thursday's of the month.

Have done it for over 10 years.

the widows are like seeing family to me.

i also decorate our center fully for every holiday or fund raiser which now it is decked out in Hawaiian Luau theme.

 

Dont mean to ramble.

just when you have no one to talk to, it happens.

 

Hugs,

barb


Ramble away, Barb! Sounds like a sweet life, with your husband mumbling and you puttering, with concrete no less!  And you are connected to others both for service and for companionship. A loving balance. You sound solid, like it is all okay with ebbs and flows, good days and bad days.

 

Please keep rambling...

Jane

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Re: YES: Is anyone taking care of a spouse?

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Message 5 of 278

Good Evening Linda,

i thank you for the morning greeting & I felt like I had a visitor.

i am sorry you lost the love of your life.

i am told I need to put my hubby in a facility but he is my life & although it is harder at times, without him, I would be more alone then I am now.

he can't talk but mumbles but I hear his sweet voice every morning mumbling.

by him is a teddy bear he gave me back in the 80's & he will talk to him or he sits him in different places on the bed or even the other morning, he had it sitting on window sill which is at his bed.

 

he usually is awake for couple hours in the morning but after that he just sleeps.

awakens for lunch & dinner .

 

i work doing things like yesterday, painting the wheel chair ramp platform, today it was patching concrete edge up to it.

 

we volunteered at our senior center for 16 years til this happenedtge centers are great as the folks there share in your life as we all have so much in common & they mainly contain widows.

 

i still volunteer by running the Food Bank programs on 1sr & 3rd Thursday's of the month.

Have done it for over 10 years.

the widows are like seeing family to me.

i also decorate our center fully for every holiday or fund raiser which now it is decked out in Hawaiian Luau theme.

 

Dont mean to ramble.

just when you have no one to talk to, it happens.

 

Hugs,

barb

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Silver Conversationalist

Re: YES: Is anyone taking care of a spouse?

1,075 Views
Message 6 of 278

Hi Jane,  Thank you for your loving supportive words!  And thank you so much for the website to the grief group, Iwill be looking into the group.  I am and have been working with a counselor, Thank Goodness, and I have the most amazing friends.  It's just going to take time.  And now it's my turn for me to care for and heal me.  I am lookig forward to that and it totally scares me.  But one step at a time!  I hope you have a nice relaxing evening!  Till later!  Take Care!

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Re: YES: Is anyone taking care of a spouse?

1,087 Views
Message 7 of 278

lb50258545 wrote:

Good Morning Mary, Barb, and JulinotJulie,  I can so relate to your struggles, emotional pain and exhaustion.  I cared for my husband for the last 9 years, intensively for the last 4 years.  Being a nurse did not make his care easier, it probably made it harder because I wanted everything to be perfect for him.  My husband did not have friends and our mutual friends were limited.  Thinking back on it I suppose we were very blessed to have three friends who helped me care for him and one friend who would visit once a month for me.  The neighbors would ask about him but they weren't the type to visit.  I suppose that's just our neighborhood.  But either way there is an amazing amount of lonliness I experienced.  And I made sure I got out daily.  I had someone come in 3 hours in the morning to help with his care and we would have that done by 10:30AM and then I would leave till 12:30PM or 1PM depending on how my husband was doing and what I needed to do for him once I got home.  On Tuesday, Wednesday and Thursday afternoon I would go out at 3:30PM to 5:30PM to swim.  Occasionally I would arrange for someone to sit with him so I could go out for an appointment or rarely a dinner.  But my husband knew when I wasn't home and always felt better once I came home.  So I respected his feelings and didn't often go out. 

As he declined and became more bed ridden I felt compelled to spend all my time with him.  I think I knew he was coming to the end of his life.  Even knowing that when he died this past Wednesday I was totally unprepared.  I had been swimming and got home 10 minutes after he expired.  I felt like I was gut punched. 

Then I had to deal with his final arrangements and that has been difficult as well because he wouldn't tell me what he wanted.  So I did what I thought was best.  And now it's over.

Ladies I know you are struggling with many different feelings and that's okay.  Caring for the person you love is the hardest thing you will ever do in life!  Caring for yourself is JUST as important and probably more difficul now than ever!  If you have ANY family members, children or friends who can help you ASK them, don't wait for them to ask you becasue they are probably scared too.  Give yourself a break anytime you can and writing on this website is a GREAT way to take a break, share feelings and get support! 

I found this website to be so helpful and I hope you do too!  Thank you for reading I wish you all the best in the care of your loved one and I wish you all the best in caring for yourself!  Linda

 

 


Linda, oh my goodness, thank you for sharing your story. Now he is at peace, and you can build/rebuild a life for yourself. There is a grief community on here, at aarp.org/griefcommunity, which may help you find the likeminded. It is such a lot of work to be a caregiver, and you gave of your skills as a nurse as well as of your heart. What a lucky man he was. Wow.  

 

You also give great advice. The social isolation of a caregiver is a big part of the psychic pain that is involved. 

 

I hope you reach out now, in your widowhood, and take care of yourself. Perhaps a bereavement support group? Most hospices offer this even if he wasn't a hospice patient. Or counseling? Someone to be a companion through this new chapter, through the grief work, and the construction of a new life. just a thought. i am a counselor and i've benefitted from counseling, so i just tend to think of it often. :-)

 

Thank you again for sharing. You are an example of why this site is so helpful.

 

Jane

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Re: YES: Is anyone taking care of a spouse?

1,092 Views
Message 8 of 278

Good Morning Mary, Barb, and JulinotJulie,  I can so relate to your struggles, emotional pain and exhaustion.  I cared for my husband for the last 9 years, intensively for the last 4 years.  Being a nurse did not make his care easier, it probably made it harder because I wanted everything to be perfect for him.  My husband did not have friends and our mutual friends were limited.  Thinking back on it I suppose we were very blessed to have three friends who helped me care for him and one friend who would visit once a month for me.  The neighbors would ask about him but they weren't the type to visit.  I suppose that's just our neighborhood.  But either way there is an amazing amount of lonliness I experienced.  And I made sure I got out daily.  I had someone come in 3 hours in the morning to help with his care and we would have that done by 10:30AM and then I would leave till 12:30PM or 1PM depending on how my husband was doing and what I needed to do for him once I got home.  On Tuesday, Wednesday and Thursday afternoon I would go out at 3:30PM to 5:30PM to swim.  Occasionally I would arrange for someone to sit with him so I could go out for an appointment or rarely a dinner.  But my husband knew when I wasn't home and always felt better once I came home.  So I respected his feelings and didn't often go out. 

As he declined and became more bed ridden I felt compelled to spend all my time with him.  I think I knew he was coming to the end of his life.  Even knowing that when he died this past Wednesday I was totally unprepared.  I had been swimming and got home 10 minutes after he expired.  I felt like I was gut punched. 

Then I had to deal with his final arrangements and that has been difficult as well because he wouldn't tell me what he wanted.  So I did what I thought was best.  And now it's over.

Ladies I know you are struggling with many different feelings and that's okay.  Caring for the person you love is the hardest thing you will ever do in life!  Caring for yourself is JUST as important and probably more difficul now than ever!  If you have ANY family members, children or friends who can help you ASK them, don't wait for them to ask you becasue they are probably scared too.  Give yourself a break anytime you can and writing on this website is a GREAT way to take a break, share feelings and get support! 

I found this website to be so helpful and I hope you do too!  Thank you for reading I wish you all the best in the care of your loved one and I wish you all the best in caring for yourself!  Linda

 

 

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Re: YES: Is anyone taking care of a spouse?

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Message 9 of 278

Mary,

i have been walking this same very hard road every since Jan. 19,2016 when my husband had a massive stroke. Although he has movement in his legs & arms, he can't walk, speech is all mumbled .i take care of him 24/7  which is everything from personal care & etc.

i feel very much alone as even though we volunteered at our senior center for 15 years, none visit or call & it seems because my husband can't speak no one comes around.

i try to understand Why this happened to him & me too..but I just wake up everyday thinking positive yet as day wears on, the struggles take me down .

How many times , you sob.Not just cry but sob.

 

My husband sleeps so much even before the stroke but it is magnified now & he wakes up early morn like 3 am as he been asleep since 630 pm night before.

 

i do exercise him me helping to hold right arm up etc.we do arm & leg exercise to keep his muscles .

I just wonder how many others are going through what I am.

there is so much more to all this 

 

Blessings,

Barb

 

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Re: YES: Is anyone taking care of a spouse?

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Message 10 of 278

I am taking care of my husband who has parkinson's and dementia as well.  He is 6 foot 5 and I am five foot 2.  I had to put him in assisted living in 2014.  It is a good private place run by an outstanding christian couple.  I still see him everyday because he has even more complications of agent orange from Vietnam.  Everytime I try to establish outside activity I have to cancel because I have to take him to the hospital for some other complication. I know about lonliness, isolation.  I thank God I have my bible....it is hard to talk to other people who are not caregivers because they really have lives ...so I try to read...at odd hours...work on my watercolors when I can when I am not exhausted.  I guess my belief in God and the afterlife gives me inspiration....after all of this...there is someplace better...I'm running the good race....

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