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Re: Is anyone taking care of a spouse?

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Message 11 of 286

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 12 of 286

@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 13 of 286

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

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Message 14 of 286

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?

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Message 15 of 286

@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?

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Message 16 of 286

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 17 of 286

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 18 of 286

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

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Message 19 of 286

My husband is 82; I'm 65.  He's had 3 thankfully minor strokes, a double bypass surgery in 2013, followed by gallbladder removal, and is now in congestive heart failure.  At 6 feet, he's down to161 pounds, and can't walk for long without a cane because all the meds he's on have interfered with his sense of balance.  Plus, he's very weak, and sleeps a lot.  He's also diabetic, has gout, and lived a life that wasn't kind to his body physically.  He was a hard rock miner, a brickmason, a carpenter, and an extreme skier.  In the Air Force, he was in aircraft crash rescue.  So he has problems from his past that he's still living with. 

The hardest thing for both of us now is knowing that his heart condition means his heart could fail at any time.  My stress comes from the fear of leaving him alone and coming back to find him gone.  His fear is leaving me in a less than optimum financial situation. 

We go to the library at least once a week, and shop in the local grocery store, as well as the Fred Meyer's 15 miles away.  He uses a motorized cart at Costco, and at the clinic I push him in a wheelchair.  On the surface, he accepts all that as inevitable, but I wonder sometimes if he isn't resentful and impatient at not being his former healthy self. 

I can't bring up what I'm feeling because when I do he counters with "Well, what about me?  I'm the one who can't do what I want to."  He doesn't get that I can't do what I want to, either.  I'm now the one responsible for everything around the house with the exception of some cooking and some credit card bills that he pays online. 

I'm overwhelmed, and feel guilty that I resent the constant worry and tending.  I tell myself it's natural, and I have a lovely friend I can call and vent to.  I just wish I could help my husband see how much stress I'm under.  I can only guess at his; I'm not the one with a terminal condition.

We have excellent medical care.  There are two teams that are available to us:  one to keep his Warfarin in balance, the other to help with the congestive heart failure, which they say is treatable but not curable. 

Sorry to take up so much space.  I hope I can help anyone else caregiving for a spouse deal with the weird intricacies involved.

 

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YES: Is anyone taking care of a spouse?

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Message 20 of 286

Mary,

Your post is from 2013 but touches many of us to this day.

It is a lonely struggle that never seems to change or end.

No help or support.  Hopeless sums it up. 

The question is should I give up?

BELIEVE.gif

 


@Futurehope wrote:


Hi



I am new to this sight. I have been caregiver to my husband for the last three years and recently had to quit my job and become a full-time caregiver because he can't be alone anymore. He has dementia and Parkinson's and gets lost in our home.It has been a big adjustment because my husband gets so confused with everything and I have to take care of absolutely everything. I feel alone most of the time even though he is here. Unless you are in this situation no-one else understands. Talking with other caregivers is important because we understand the hi's and lo's of our days.



Good Luck and God Bless each of you!



Mary


 

 

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