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Message 201 of 286

Yes, I take care of my husband - for several years.  I understand everything you said, and many of the others.  Unless you deal with it personally, you really don't understand what it is like 24/7.  I wish I had answers for you and me, but I think it does help to know you are not alone in the situation.  I can only offer words of encouragement.  Keep on doing your best, but take care of you first.  If you don't care for yourself, you won't be any help to your loved one.

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Message 202 of 286

Yep, we take care of each other.  Always have!

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I have been taking care of my husband since 2007.  He has a brain tumor on his brain stem. He has had surgery, chemo and radation but doctors were not able to get all of it because of where it is located.  It has affected his balance, hearing and throat. In addition, he has rhematoid arthritis in both his knees, shoulders hands and feet. I work full time so he has a full time caregiver who comes 5 days a week from 8 to 4 pm.  Even with that, working full time and caregiving after work can be very stressful and tiring.  My husband is a night walker, going to the kitchen for food at 2 am and he goes to the bathroom approximately 3 or four times at night, so I don't get a lot of good sleep.  One saving grace for me is my daughter and son as well as my grandson now that he's 14 and staying with us.  I have a little more time to go and do something for myself when they are available to sit with Papa.  Also, my church family is very supportive and would probably do even more if I would just ask them.  I have learned that I don't have to go it alone.  Please find your respite so that you don't burn out totally.  It is a hard job but that's what comes with the "I do".

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Message 204 of 286

I have not taken care of my spouse, yet.  However, for the last seven years I have/had been the sole caregiver to an Aunt with Alzheimer's.  She had no children and no one in our family would take it on.  So I did, quit my job, which I loved, and became her Legal Guardian.  Unfortunately my Aunt past three weeks ago.  I can relate to the alone feeling so much.  In the beginning I reached out to everyone and anyone in my family, and I come from a big family, with nothing but doors closing.  I spoke with the nurse of my Aunt's doctor and she really helped me with support, understanding, and lots of knowledge.  I learned there is so much help out there, that isn't family by blood but will become family by choice, if you reach out.  I eventually got assistance to come in a couple of times a week.  It worked out so well that eventually it increased to several times a week, to 24 hours a day.  This was a life saver for me as a caregiver.  As a caregiver I learned you really have to take care of yourself in order to help your loved one and you must ask and get help.  The breaks I had with the assistance helped me physically, mentally, etc.  Eventually my Aunt got so bad that I did have to place her in a memory care/assisted living facility.  But my caregiver status did not end there and continued until the moment she passed.  There are resources out there and all you have to do is ask and keep asking until you get the information, answer, and help you need.  

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Message 205 of 286

As a nurse I think I should have a better grip on caregiving for my husband but I find myself freaking out over not being able to solve his problems and then I freak over not being able to let it go!  Dementia is such a miserable disease for the caregiver as well as the individual suffering from it.  There are times when my husband knows who I am and calls me by name, and other times when he can only speak Greek, his native language.  Unfortunately I don't speak a whole lot of Greek!  Any suggestions on letting go of the guilt over not being able to make it better.  I know I can't make it better but when I've tried all my nursing tricks and things don't change, UGH!  I feel it so inept!  Again, I know I'm doing the best I can I just need to vent!  Thank you for listening!

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Message 206 of 286

@tomrevoir wrote:

I have been my wife's sole caregiver for several years.  I am 67 and she is 68.  She has crohns disease and rheumatoid arthritis. She was hospitalizes each year for 3 months between 2009 when the removed a large portion of her colon through 2012. Mostly kidney stones and liver complications brought on by the crohns.

 

We live in the country and I drive 50 miles to work 4 days each week and work remote the 5th day from home. I do all the medical scheduling, prescription tracking, shopping and housework (laundry and cooking). I’m not much of a housekeeper.

 

I went through periods of depression, anger and anxiety dealing with this. I am now at peace with my role. I am retiring at the end of December and will start cleaning and de-cluttering our home.

 

Each day brings its own challenges. I feel lonesome much of the time but have accepted my lot.   The strange thing is that when I was 11 my mother had a stroke and I did the same thing for 4 years before she died.  Funny how life works.  More later...


Hey there, gentleman, you are a wonderful husband.

So what can you do about your isolation? Anyway to reach out into the world and see other people? Join a toastmasters group and learn to write a short speech. Take up bowling. Go sing baritone in a church choir. Call up your old buddies and watch a sports event. She can be left alone for short periods, right? 

You're very philosophical about all of this, and i just wish for you more fun, more spontaneity, more people... just a thought.

 

glad you wrote, though. another take on the caregiving for a spouse situation, and the rarer voice of a husband to boot.

 

write more?

jane

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Message 207 of 286

 


dk8336215 wrote:
Reading all the stories has helped me already. Thank you all for sharing.

Somehow it just never dawned on me that I'd be in this place. My husband is 74 and I am 59. We have worked together in our own business for 19 years, gradually moving it all online. He had what we thought was a simple surgery Mar 2015. It wasn't. 2 more surgeries and now he is at the place where he can barely walk more than 10 ft. He complains of pain constantly.

He had 2 older boys who rarely visit. Even tho we've been married for years, they have never accepted me or shown me the slightest amount of respect or acknowledgement. He and I adopted an older son, so we have one child together.

So here is my dilemma - we had a very active life before. We traveled a lot. We went out to concerts, movies, the dog park several times a week. I'm now doing everything in the business and caring for him. He argues with me about little things and I should stop and talk to him, but I am exhausted all the time. I rarely do anything fun. I cook, clean, care for him and work. I heard him complaining about me to one of his boys and that is like the last straw. He can't live by himself. His two oldest sons barely have anything to do with him. Our son is 24 and just starting his life but he has said he would take him if need be.

He lives 800 miles away. I would like to consider moving there because I know he would help out, I'd get to see my grand daughter (who is 3) and it wouldn't be so isolating for me like it is. My husband won't hear of it.

I think the issue for both of us is that we keep waiting for him to get better. We've both always been the strong and active ones and now he's not and I feel some days like I'm just hanging on.

In a few hours my husband is getting on s plane to go see our son for a week. I hope that the trip isn't too hard. It's s direct flight and we have wheelchairs on both ends. I am grateful for the week off. I tried to take a vacation myself a month ago but he couldn't care for himself as well as we thought and even with someone coming in daily I had to fly back for an emergency after 4 days.

My situation seems so much easier than others that have posted. All I can say is that I never wanted to be a caregiver. I totally suck at it. but if I don't do it, I don't know who other than our son would. Our son had such a tough start to his life that I want him to enjoy his time now and build a life for his daughter. He has full custody of her.

It does help to vent. Thank you

______________________________________
When i hear that one member of a family says 'i won't hear of it' to another, i think, REALLY? WHO GIVES YOU THE RIGHT TO MAKE UNILATERAL DECISIONS ABOUT OUR LIFE TOGETHER???
That's what i think. I'm not saying you should move to be closer to your son, but i do think your husband needs to be your partner in life and not the boss with veto power. You're doing an immense amount of work... FOR HIM. You could make a unilateral decision to stop caring for him. I know you won't but... you COULD.
So how is this week off going for you? I hope it's the breather you need.
You know what i think might be helpful? Couples counseling.
What do you think about what i've said? Seems like a marriage in trouble, to me. And sons at the ready... and if his sons aren't then they should be. and maybe they will be if you do less...
Write more?
Jane

 

 

 

 

 

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Message 208 of 286

I have been my wife's sole caregiver for several years.  I am 67 and she is 68.  She has crohns disease and rheumatoid arthritis. She was hospitalizes each year for 3 months between 2009 when the removed a large portion of her colon through 2012. Mostly kidney stones and liver complications brought on by the crohns.

 

We live in the country and I drive 50 miles to work 4 days each week and work remote the 5th day from home. I do all the medical scheduling, prescription tracking, shopping and housework (laundry and cooking). I’m not much of a housekeeper.

 

I went through periods of depression, anger and anxiety dealing with this. I am now at peace with my role. I am retiring at the end of December and will start cleaning and de-cluttering our home.

 

Each day brings its own challenges. I feel lonesome much of the time but have accepted my lot.   The strange thing is that when I was 11 my mother had a stroke and I did the same thing for 4 years before she died.  Funny how life works.  More later...

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Message 209 of 286

Have you looked into care.com? You can specify exactly what kind of help you want and how much you are willing to pay for this help. I think that the minimim you can specify that you are willing to pay is $15/hour. But, surprisingly, some people are willing to work for considerably less. Once, you have interviewed someone you find interesting, you can order a background check.

I've hired someone to help me for a minimum of 4 hours 3 days a week. She keeps my husband occupied with games and and both OT and PT exercises. She also "husband sits" if I have a meeting that I need to attend at night. The best part of this is that I can find "Gail Time" when I need it and do not feel guilty.

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Message 210 of 286
Reading all the stories has helped me already. Thank you all for sharing.

Somehow it just never dawned on me that I'd be in this place. My husband is 74 and I am 59. We have worked together in our own business for 19 years, gradually moving it all online. He had what we thought was a simple surgery Mar 2015. It wasn't. 2 more surgeries and now he is at the place where he can barely walk more than 10 ft. He complains of pain constantly.

He had 2 older boys who rarely visit. Even tho we've been married for years, they have never accepted me or shown me the slightest amount of respect or acknowledgement. He and I adopted an older son, so we have one child together.

So here is my dilemma - we had a very active life before. We traveled a lot. We went out to concerts, movies, the dog park several times a week. I'm now doing everything in the business and caring for him. He argues with me about little things and I should stop and talk to him, but I am exhausted all the time. I rarely do anything fun. I cook, clean, care for him and work. I heard him complaining about me to one of his boys and that is like the last straw. He can't live by himself. His two oldest sons barely have anything to do with him. Our son is 24 and just starting his life but he has said he would take him if need be.

He lives 800 miles away. I would like to consider moving there because I know he would help out, I'd get to see my grand daughter (who is 3) and it wouldn't be so isolating for me like it is. My husband won't hear of it.

I think the issue for both of us is that we keep waiting for him to get better. We've both always been the strong and active ones and now he's not and I feel some days like I'm just hanging on.

In a few hours my husband is getting on s plane to go see our son for a week. I hope that the trip isn't too hard. It's s direct flight and we have wheelchairs on both ends. I am grateful for the week off. I tried to take a vacation myself a month ago but he couldn't care for himself as well as we thought and even with someone coming in daily I had to fly back for an emergency after 4 days.

My situation seems so much easier than others that have posted. All I can say is that I never wanted to be a caregiver. I totally suck at it. but if I don't do it, I don't know who other than our son would. Our son had such a tough start to his life that I want him to enjoy his time now and build a life for his daughter. He has full custody of her.

It does help to vent. Thank you
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