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Re: Is anyone taking care of a spouse?


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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I, too, am new to this site. I am caring for my husband of 52 years. He is a retired physician and has major back issues and is in constant pain. Our life previously centered on friends, travel and frequent theater events and other social occasions. In the last 5 years, his condition has deteriorated and he is no longer able to do these things. He needs help with basic living. He has had back surgery which helped for about a year, but then gradually became almost completely disabled. While he doesn't have dementia, his affect is different and depression has taken over his life. He has little interest in anything. I find myself resentful and long for our old life. He is currently in a trial for a nerve block stimulator, but that doesn't seem to be working. To be fair, he tries to be reasonable and not be too demanding, and he is appreciative of my efforts. We have a very good relationship and he is my dearest friend, but I'm feeling overwhelmed and depressed and needed to vent. 

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@JaneM202893 wrote:

I, too, am new to this site. I am caring for my husband of 52 years. He is a retired physician and has major back issues and is in constant pain. Our life previously centered on friends, travel and frequent theater events and other social occasions. In the last 5 years, his condition has deteriorated and he is no longer able to do these things. He needs help with basic living. He has had back surgery which helped for about a year, but then gradually became almost completely disabled. While he doesn't have dementia, his affect is different and depression has taken over his life. He has little interest in anything. I find myself resentful and long for our old life. He is currently in a trial for a nerve block stimulator, but that doesn't seem to be working. To be fair, he tries to be reasonable and not be too demanding, and he is appreciative of my efforts. We have a very good relationship and he is my dearest friend, but I'm feeling overwhelmed and depressed and needed to vent. 


Hey there, Jane. From one Jane to another... We hear you. And i'm thinking, why not let the two of you be joined by others to enlarge the caregiving circle? I don't mean to assume, but, if he was a physician, and you two traveled extensively, why not use some savings to hire help. One day a week to give him a thorough bath, shave, shampoo, and you a break? Someone to take him out for a few hours while you nap or see a matinee? A male aide, a female aide, hire someone who'll give him a new perspective on what it takes to care for him. And allow him to be pampered by someone else besides you?

 

If you're saving for a rainy, guess what. It's raining. 

 

Do you have any children? Time to visit, time to help around the house, someone please mow the lawn? I dunno what you need done but the burden of his disability does not need to fall on just the two of you. 

 

It IS a challenge to face the losses of physical decline. But his mind his sharp, and you have many excellent memories to recall, trips to remember, movies to stream or rent or watch. What have you tried? What does he still enjoy? If you can get a break, you will be refreshed enough to renew your marriage and be creative... hopefully....

 

How can we help you feel less overwhelmed? What do you think would be a first step?

Jane

who lives in rural oregon with a spouse who has MS

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Hi Jane,

It's so great that you took the time to write out your frustrations!  I, too, took care of my husband till his passing and as much as I loved him it was/is difficult, frustrating, tiring and yes depressing to watch the man you love and knew as vibrant and involved become so debilitated.  I hope you have some friends or caregivers who can sit with your husband so you get your much needed breaks.  Self care is so very important!  As is venting so give yourself permission to do both!  This site is a great place to vent, there's no judgement and lots of support!  Sending you lots of prayers!  Linda

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♥ Shelties are not my whole life ∽ but they make my life whole ♥
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I have been caring for my wife, who has severe progressive MS, for 18 yrs.  We lived in CT, where we received Medicaid.  We now live in NV who refuses to give us Medicaid because we make too much money!  I am 79 yrs old.  Does anyone know if and how I can get paid for caring for my wife?   

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@RichardT964998 wrote:

I have been caring for my wife, who has severe progressive MS, for 18 yrs.  We lived in CT, where we received Medicaid.  We now live in NV who refuses to give us Medicaid because we make too much money!  I am 79 yrs old.  Does anyone know if and how I can get paid for caring for my wife?   


Hi Richard!  I'm sorry that you did not receive a response to your question! And sorry that each state sets a different level of 'poverty' and eligibility for Medicaid. Connecticut is a wealthy state and apparently more generous. Have you found your local Area Agency for Aging? Look up your zip code on www.eldercare.gov and the agency closest to you will pop up. Call them and ask: about spending down to eligibility for Medicaid, about respite care so you can get a break now and then, and whatever else you're wondering about. If you can, make an appointment to go to the agency in person. The folks you meet with should know all about what's available to you and your wife. 

 

Will you and your wife eventually choose Assisted Living? Do you have other family members who can help? Even if they live back in Connecticut, perhaps someone can fly out for a week and help out.  I hope you've considered a support group for caregivers, or for people with MS and their families. My partner has MS, too. 

 

One more thought: AARP also has a caregiver hot line that might be helpful: https://www.aarp.org/caregiving/basics/info-2018/support-line.html  explains the hours and expertise, and the phone number is  1-877-333-5885,

 

 

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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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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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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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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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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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@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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@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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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!

Newbie

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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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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I am newly slated to care for my husband of 7 years after he recently suffered back to back strokes.  The twist is, we were going to be separated prior to the strokes, amicably.  He had already applied for and received Section 8 housing since his SS income is all that he had and a small pension for housing.  After the strokes, we had already given up our apartment and his wasn't ready yet, so we moved in with our daughter for about 5 months.  He then was able to move into his apartment, but I couldn't as I was not on the lease and it was quite small to boot.  I live with my sister and travel back and forth to his apartment to check on him.  He needs ongoing checkups as the strokes have left him with short term memory loss and weakness on the left side of his body. He can function ably, but his day to day care is being neglected and he does not eat to provide nutrition and he has lost an alarming amount of weight.  He used to be quite fastidious about his appearance, but now his beard is scraggly (not shaving) and he sleeps and travels in the same sweats and shirts.  I understand that I have to move back in with him as companionship and family is important to him and he is vehemently opposed to "strangers" caring for him at all.  Because of the Federal guidelines, I cannot stay in the apartment with him and if I do, only for a limited time.  Is there a way that I can get housing for both of us even though he receives Section 8 assistance?  I am employed and I believe that I add to any rent that is imposed but I do not want to compromise his standing in the program and not sure how to look for a property or home that will accept both his payments from Section 8 and rent from me.  I am not even sure if I am framing this query correctly, but I just want to know if anyone has any ideas out there.  We live in Maryland outside of Baltimore.

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@Reggiemac wrote:

I am newly slated to care for my husband of 7 years after he recently suffered back to back strokes.  The twist is, we were going to be separated prior to the strokes, amicably.  He had already applied for and received Section 8 housing since his SS income is all that he had and a small pension for housing.  After the strokes, we had already given up our apartment and his wasn't ready yet, so we moved in with our daughter for about 5 months.  He then was able to move into his apartment, but I couldn't as I was not on the lease and it was quite small to boot.  I live with my sister and travel back and forth to his apartment to check on him.  He needs ongoing checkups as the strokes have left him with short term memory loss and weakness on the left side of his body. He can function ably, but his day to day care is being neglected and he does not eat to provide nutrition and he has lost an alarming amount of weight.  He used to be quite fastidious about his appearance, but now his beard is scraggly (not shaving) and he sleeps and travels in the same sweats and shirts.  I understand that I have to move back in with him as companionship and family is important to him and he is vehemently opposed to "strangers" caring for him at all.  Because of the Federal guidelines, I cannot stay in the apartment with him and if I do, only for a limited time.  Is there a way that I can get housing for both of us even though he receives Section 8 assistance?  I am employed and I believe that I add to any rent that is imposed but I do not want to compromise his standing in the program and not sure how to look for a property or home that will accept both his payments from Section 8 and rent from me.  I am not even sure if I am framing this query correctly, but I just want to know if anyone has any ideas out there.  We live in Maryland outside of Baltimore.


Hi ReggieMac, you are in a pickle. If you go to www.Eldercare.gov and type in your zip code, you'll find the agency that is supposed to help everyone who is disabled and / or over 60 to get the help you need, including very specific legal and financial issues that you bring up here. Let me just throw out some questions and please write back to say what makes sense and what else you need:

1. if he is getting less care than he needs now, (any care at all?), why is it so important for him to stay in this apartment? Section 8 places take years to get into but it sounds like he needs a state supported assisted living place. I'm curious how he qualified with you still working since spouse assets get included, but what matters now is getting him adequate care wherever.

2. and since you were going to separate (and eventually divorce?) what is the future plan for him? before he had strokes he was independent and he was going to live in the apartment and come what may. but now? yeah he had strokes but...what if you'd separated 6 months ago and then he had the strokes? would you move back in? was that always the agreement? Separate until one of you needs caregiving and then the other steps back in?

women do so much caregiving. if you were in section 8 and had 2 strokes, would he step in? just asking.

3. You share a daughter. who else is around? how about a family meeting? think this through. with a group.

 

does any of this make sense? do i have this completely wrong?

btw, an eldercare attorney would be super helpful. i know, not cheap. but both your financial futures hang in the balance. 

 

write back?

jane

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I am 54 years old and have been caretaking for my husband for the past three years.  He had a severe stroke and heart attack.  I was told by the social worker that I could apply for help through medicaid but they would come after my house for payment if he passed.  That's another story to tell at a later time.  At present, I shower him, dress him, take and record his blood pressure; prepare medications take him to all his doctor appointments, exercise him daily, change his bed daily, empty urine, clean constantly, wash constantly - the list goes on and on and I have no help.  What is really bothering me is why I can't get licensed as a caretaker by experience.  I don't mind paying for the license itself, but I don't need to take classes.  If anything, I should be teaching classes.  AM I the only one with this issue? 

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I understand what you are going through.  Life can be cruel, not only for us, but for our spouse's and family members.  What we need to know is that life will get better at some point.  I send healing thoughts your way.

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Hi, my name is Linda and I have been a caregiver to my husband for the past 44 yrs, but a health caregiver for the past 3 yrs. My husband suffered a massive Aphasia left brain stroke in November 2014. Both of our lives changed forever that fateful day. My life has went from being independent, outgoing and pretty happy and healthy to what I consider Hell on Earth.  He has physical limitations due to Spinal Stenosis, but the main caregiving is a result of his stroke.  His personality has changed 180 degrees.  He is very angry and he ONLY takes his anger out on me. To everyone else he puts up a front as if he is the kindest person around.  I am his one and only caregiver and expected to do everything for him. With the exception of dressing and bathing him. He is depressed which would account for a small portion of his anger. For those who are unaware depression is anger turned inwards. I need help as I feel lost, hopeless, helpless and certainly unloved. Anyone else dealing with a spouse with the same or similar symptoms /conditions and how do you survive?  I have no one to confide in and absolutely no help from our 4 children . I would love to be able to speak with anyone, either man or woman dealing with caregiving. Thank you 

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 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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@l536249b wrote:

Hi, my name is Linda and I have been a caregiver to my husband for the past 44 yrs, but a health caregiver for the past 3 yrs. My husband suffered a massive Aphasia left brain stroke in November 2014. Both of our lives changed forever that fateful day. My life has went from being independent, outgoing and pretty happy and healthy to what I consider Hell on Earth.  He has physical limitations due to Spinal Stenosis, but the main caregiving is a result of his stroke.  His personality has changed 180 degrees.  He is very angry and he ONLY takes his anger out on me. To everyone else he puts up a front as if he is the kindest person around.  I am his one and only caregiver and expected to do everything for him. With the exception of dressing and bathing him. He is depressed which would account for a small portion of his anger. For those who are unaware depression is anger turned inwards. I need help as I feel lost, hopeless, helpless and certainly unloved. Anyone else dealing with a spouse with the same or similar symptoms /conditions and how do you survive?  I have no one to confide in and absolutely no help from our 4 children . I would love to be able to speak with anyone, either man or woman dealing with caregiving. Thank you 


Hi Linda. "Hell" is most unpleasant, and has the additional quality of being 'forever', like a life sentence. Let me ask you a few questions.

 

What if you were the person with spinal stenosis and thus some functional limitations, which your husband of decades helped with. And then you have a stroke, and many more limitations come upon you, and you turn from a wife and helpmeet to an angry abusive woman. Do you think your husband would put up with you?

 

Just asking you to look at your situation from a gender role perspective. Do you feel as though this is your fate, to put up with his anger, and all the work you have to do for him and for you, because .... why?  In the fine print of the marriage contract it says "you will martyr yourself if the husband becomes gravely ill"? 

 

First place i would go would be to his doctor, with him, and simply say, 'since the stroke, he has become very angry and unhappy. What would you suggest, doc?'  There are medications for agitation, for depression, for confusion, any of which may be a result of the stroke. If the doc can't answer the question, then look for a geriatric psychiatrist. 

 

What about a behavioral approach? If he's angry, do you need to hop to it? Or can you say, I will do as you ask if you use a nicer tone of voice. Or, if he simply can't help it, hire someone to help: i bet his behavior improves once it's not his wife whom he's yelling at.

 

Have you considered taking him to one of your 4 children's homes? Park him on the porch and say, have fun, i'll be back in about 4 hours?

 

Living in hell is pretty awful. what are you willing to do to get out of hell?

 

Jane

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It has been a long time since I've written a post and so much has happened.  At the end of September my husband had a stroke and became unable to move his right side.  He also lost his ability to speak, sit up, walk, or feed himself.  He had a Grand Mal seizure at the time and I didn't think he would live through the weekend.  But he did and he got a bit better!  Then in December he had another episode, and another Grand Mal seizure and again I thought well this is it!  But no, he got better.  Then in the beginning of March a third episode, and Grand Mal seizure, and once again I thought this is it, but no he has gotten a bit better since.  He's been on Hospice since last October and he is hagning on.

I'm so tired, emotionally and physically.  Part of me wants him to die and then there's time I think he's going to be fine.  I know he will never be "fine".  What I don't know is how long this will go on.  I want to remembr my husband with love and affection.  And I'm not willing to place him in a comfort care house or in facility hospice.  I know it's my issue.  But I do believe he still recognizes the caregivers we have and he knows when someone he doesn't know comes into the house even if he can't verbalize it. 

I know you don't have any answers I just needed to verbalize my frustrations and pain. 

Thank you for reading!

AARP Expert


@lb50258545 wrote:

It has been a long time since I've written a post and so much has happened.  At the end of September my husband had a stroke and became unable to move his right side.  He also lost his ability to speak, sit up, walk, or feed himself.  He had a Grand Mal seizure at the time and I didn't think he would live through the weekend.  But he did and he got a bit better!  Then in December he had another episode, and another Grand Mal seizure and again I thought well this is it!  But no, he got better.  Then in the beginning of March a third episode, and Grand Mal seizure, and once again I thought this is it, but no he has gotten a bit better since.  He's been on Hospice since last October and he is hagning on.

I'm so tired, emotionally and physically.  Part of me wants him to die and then there's time I think he's going to be fine.  I know he will never be "fine".  What I don't know is how long this will go on.  I want to remembr my husband with love and affection.  And I'm not willing to place him in a comfort care house or in facility hospice.  I know it's my issue.  But I do believe he still recognizes the caregivers we have and he knows when someone he doesn't know comes into the house even if he can't verbalize it. 

I know you don't have any answers I just needed to verbalize my frustrations and pain. 

Thank you for reading!


Hi Linda! Thanks for writing!

 

It's good to hear from you again. I went back and re-read your earlier posts in which i found your name, found that your husband used to speak Greek before he developed aphasia, that you have worked as an RN, that he has Lewy Body Dementia, that you love each other very much. And you have a therapist and a massage therapist. I'd forgotten about that whole episode in which you both fell!

 

You are a trooper. I know, how original, how predictable. But i do hope you know how much you are dealing with and have been for so long. I hope you can get out for a massage, and to see your therapist. That you can kiss his forehead, and he can smile back. He is in his body somewhere, he is loving you back.

 

And it is exhausting.

 

Do you have a social worker in the hospice program whom you can talk to, frankly? or the chaplain, or both? Many caregivers wish for the death of the one they are caring for, and then regret it, but it is all in the mix, the anticipatory grief, the relief when he gets better, the terror that his death is imminent. And then it isn't.

 

I'm glad to hear from you, glad you have hospice and a team of healers for you both, and hope you'll keep writing. When the time comes, there is also a grief group at aarp.org/griefcommunity. Happy Easter,

 

Jane

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Hi Jane! Thank you for responding. I do have a Social Worker with the Hospice team and a Chaplin, I'm not overly impressed with either of them. And it's probably just me It seems once I told them I was a nurse they assumed I knew everything I needed to know and I have a terrible time asking for help. At the start of Hospice the social Worker gave me incomplete and incorrect information and that just completely blew my trust in her. She's okay now but we don't really get into any type of "supportive" conversations! I had a wonderful conversation with the Chaplin, he was very supportive and recommended a support group in a local parish, which I called but I have not heard back from them and I haven't contacted them again. I do have my issues. My therapist is a young woman, and not really versed in grief work from my experience and I don't have the energy to try and find someone else. So those are my reasons/excuses.

You did hit it on the head when you talked about anticipatory grief. And I totally agree, it's a challenge daily. I'm constantly looking for any signs of positive or negative things going on with him. The last couple of days he's seemed so uncomfortable, yesterday more so than today but I think it's his tummy. He's had 3 loose eliminations and I think he may have stomach or intestinal cramps. I'm hoping it's getting better and by tomorrow be gone. I know he's somewhat better today compared to yesterday!
This too will change as nothing stays the same! Thank you for reading and responding! And Thank You for letting me know about the AARP Grief group as well. I hope you have a very Happy Easter as well!
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 I have been taking care of my wife for all most five years. She has eppilespy, 3 types of authritus, and a variety of ailments and surgeries, too many to list. 

Last year I finally received some help from social security by getting a caregiver 5 hours a day, 5 days a week. 

This has helped in the physical demands on me, but the pressure and drain of taking care of ALL of the household duties has been weighing me down and taking its toll on my health and psyche. We have 2 teenage children in our home and I am the only one that can drive, cook, clean, shop, on-&-on. 

That is just a brief explanation of my situation, anyone else in a similar situation? Please Reply if you are. I'm feeling more and more isolated lately.

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