Caregiving: I’m frustrated and exhausted.

Posted by dem2301 @dem2301, Jun 18, 2019

My post tonight is nothing but venting and a bit of poor me. I'm caring for my husband with Parkinson's and Lewy body dementia. His daily care demands are exhausting some days besides taking care of our home, bills etc. and attempting to take care of myself which I'm not really doing very well. If I would have the listened to the nurse of 37 years(meaning me) I would have advised myself to go to the emergency room after being sob of breath and having chest pressure but no I needed to make supper, do meds, blood sugars, help him to the bathroom and be at his beck and call. I do feel better now but am so tired and I know he will call me at least twice tonight to help him. I know this sounds pretty mixed up but I just need to vent. Unless your living this no one really wants to listen. Including my own kids. It's impossible to even carry on friendships anymore, I'm unavailable when I'm invited which is becoming less frequent all the time
I don't leave him anymore unless it's to run a short errand. I had breast cancer and treatment last summer, I never skipped a beat. The day after surgery I resumed my daily care routine, drove 40 miles one way for radiation and still cared for him. I had carpal tunnel surgery in may, came home and took care of him. Like I said there is a bit of poor me involved tonight..i better quit for now. Thanks for letting me vent.

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@debiobrien

I will check out the program you mentioned. NO they never want to be in a home unless that ws the last resort. my mom is doing well and walks a mile every morning then works in her gardens for a couple house and rides a stationary bike after that. but then shes done for the day. its my aunt who is really failing. she has been ill for years and had a triple by pass at 89 and never really recovered from that. my aunt is like she over 100 years old she can barely walk and get around. one day we might have to put her in a home but thats up to her kids but i will never put my mom in a home i will move in with her if she no longer can take care of herself. i always promised i would never do that to her. but my moms is actually in much better health than me lol.

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@debiobrien WOW your mom walks a mile and rides a stationary bike every day! Amazing! Maybe you could find a nurse’s aide to come in for a few hours each day to help your aunt bathe and get dressed. The senior center or state (or city or county) department on aging should have some resources for you. Have fun fishing!

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@debiobrien

I will check out the program you mentioned. NO they never want to be in a home unless that ws the last resort. my mom is doing well and walks a mile every morning then works in her gardens for a couple house and rides a stationary bike after that. but then shes done for the day. its my aunt who is really failing. she has been ill for years and had a triple by pass at 89 and never really recovered from that. my aunt is like she over 100 years old she can barely walk and get around. one day we might have to put her in a home but thats up to her kids but i will never put my mom in a home i will move in with her if she no longer can take care of herself. i always promised i would never do that to her. but my moms is actually in much better health than me lol.

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Hope you can keep your promise to never put her in a home. Lots of people have regretted making that promise and feel such guilt if they can't keep it. You really need to take care of yourself just as much as her or you won't be any help to either her or your aunt eventually. Bless you for all you do.

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@leeandpat

Hope you can keep your promise to never put her in a home. Lots of people have regretted making that promise and feel such guilt if they can't keep it. You really need to take care of yourself just as much as her or you won't be any help to either her or your aunt eventually. Bless you for all you do.

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Wise words @leeandpat We never know what may be coming down the pike when it comes to illness, infirmity, etc. Nothing makes me more upset than the advertisements now on our TV where the announcer says 'and we promised Dad, Mom would always stay at home.' Sometimes it is impossible. My DILs father became combative and was twice the size of his wife and home care was simply not possible.

I hope your day is a solid one today!

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I too said I would never put my husband in a care center, but the time came when I could no longer ensure his safety or mine by keeping him at home. Sometimes life just doesn't turn out the way you have planned and you need to take care of yourself. I know he is getting better care than I could possible give him at home and since he needs skilled care the care center is the best place for him. I visit at least every other day since it is 45 miles from our home and I am 84 years old. I will as long a I can still drive. Then we will have to make other arrangements if he is still living. He is 89 and health is pretty good except for Alzheimer's disease and vascular dementia so he can only feed himself. Eats good and is cheerful when awake which is less and less all the time.

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@rmftucker

I too said I would never put my husband in a care center, but the time came when I could no longer ensure his safety or mine by keeping him at home. Sometimes life just doesn't turn out the way you have planned and you need to take care of yourself. I know he is getting better care than I could possible give him at home and since he needs skilled care the care center is the best place for him. I visit at least every other day since it is 45 miles from our home and I am 84 years old. I will as long a I can still drive. Then we will have to make other arrangements if he is still living. He is 89 and health is pretty good except for Alzheimer's disease and vascular dementia so he can only feed himself. Eats good and is cheerful when awake which is less and less all the time.

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Yes, it makes it all especially hard when we get older and don't have an acceptable facility nearby. We have a good SNF in our local hospital which is only about 5 mins. away but costs $15,000/MONTH! At least it wouldn't be long before we'd qualify for Medicaid as well as free care in a nice, new VA home about 1 1/2 hrs. away including mt. driving in the winter.:( Trusting God to guide us as we plan. My husband in on the waiting list in both facilities but I'm hoping that won't be necessary for 1-2 yrs,

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@gingerw

@debiobrien I know I don't need to remind you. But you know me just speak from my heart. Make sure that when you do take her fishing, that you have told more than one person where/what time you are going and how long you'll be. Make sure you have a phone with you that can get reception where you'll be. If something happens, you know that the rescuer in you would never forgive yourself if you couldn't communicate with someone. I'm glad that your mom is ready to get out there. Like you said, early in the morning would be nice because the fish probably will be a little bit closer to the surface before the heat comes, if my memory serves me correctly from my fishing days.
Ginger

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yes we will be safe im an ex cop of many years and will have my cell and her and my gun on me.. the other guy needs to watch out for me lol.. but we will go to an open place not some secluded private place. probably a pier or a bridge...somewhere out in public and tis a good thing i'm a first responder also and know all the right things to do if her or i get injured. but im sure we will be fine shes excited about it. she don't need a license but i need one for 6 more months till i turn 65 in dec... after 65 no license is required. but than you so much for your concern its very touching and sweet.

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@becsbuddy

@debiobrien WOW your mom walks a mile and rides a stationary bike every day! Amazing! Maybe you could find a nurse’s aide to come in for a few hours each day to help your aunt bathe and get dressed. The senior center or state (or city or county) department on aging should have some resources for you. Have fun fishing!

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yes shes pretty amazing. she is in better health than me for sure. she cant sit still. shes quite active for sure. NO my aunt would not want anyone coming in and bathing her or do things for her. actually to be honest she a little selfish that she depends on me and my mom to do everything for her she wont even ask her own kids to do anything for her not that they even would. i told her the other day "you know mom is 92 years old also i know she doing well but she is 92 nd get tired more easily these days and im not really well so letting others help might be a big help to us" but she just said well your mom wants to do everything she does so i just let her. they have always taken care of each other their mother died when they were 3 days old not sure why and their father was killed when they were 6 so their grandmother took care of them till they were 16 and she died so they quit school and went to work and lived in a rooming house so they have always depended on each other and always took care of each other and i cant break that bond no matter what i say or do .. my mom is stubborn and will complain about doing so much but yet she jumps right is and does it all for my aunt so i just try and do things for my mom to take a load off her. yes looking forward to getting back to fishing. im allergic to all fish but fun catching them and then mom and aunt can eat them. lol. working on getting the poles with new lines and everything. maybe by next week we can try a early morning hour or so before it gets to hot. its been over 100 most days here in fla lately. have a blessed evening. and sleep well.

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@leeandpat

Hope you can keep your promise to never put her in a home. Lots of people have regretted making that promise and feel such guilt if they can't keep it. You really need to take care of yourself just as much as her or you won't be any help to either her or your aunt eventually. Bless you for all you do.

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well shes still pretty sharp and still takes care of herself so im pretty sure she will stay at home till god takes her home. i will be right by her side all the way. she would have to become pretty ill or crazy or aggressive or something for me to put her in a home. being a cop for so many years and also working the a maximum security prison i can take pretty much anything. i will do everything i can to keep her home. somehow i feel she will just pass in her sleep one night. i don't know why i feel that but something deep inside me feels that.

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@rmftucker

I too said I would never put my husband in a care center, but the time came when I could no longer ensure his safety or mine by keeping him at home. Sometimes life just doesn't turn out the way you have planned and you need to take care of yourself. I know he is getting better care than I could possible give him at home and since he needs skilled care the care center is the best place for him. I visit at least every other day since it is 45 miles from our home and I am 84 years old. I will as long a I can still drive. Then we will have to make other arrangements if he is still living. He is 89 and health is pretty good except for Alzheimer's disease and vascular dementia so he can only feed himself. Eats good and is cheerful when awake which is less and less all the time.

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You are so right, @rmftucker My wife and I learned way to soon to never say never when it comes to what to expect from chronic illnesses. When she was first diagnosed she would often say 'honey, don't ever let me _____ (fill in the blank)' and I'd say 'I won't, sweetheart.' We burned through those so fast our heads swam. That resulted in some hefty guilt on my part until I learned to just say 'I promise I'll try.' In the later stages of her life I was doing things for her we never, ever imagined, but had to do. It was tough, humiliating for her, but as much as she hated it, we had no alternative but to do those things.

For sure there is no fairness in chronic illness.

Safe travels!

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@rmftucker

I too said I would never put my husband in a care center, but the time came when I could no longer ensure his safety or mine by keeping him at home. Sometimes life just doesn't turn out the way you have planned and you need to take care of yourself. I know he is getting better care than I could possible give him at home and since he needs skilled care the care center is the best place for him. I visit at least every other day since it is 45 miles from our home and I am 84 years old. I will as long a I can still drive. Then we will have to make other arrangements if he is still living. He is 89 and health is pretty good except for Alzheimer's disease and vascular dementia so he can only feed himself. Eats good and is cheerful when awake which is less and less all the time.

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yes we had to put my father in a secure home he had dementia and get very aggressive. but mentally my mom is good. so i keep praying it will continue that way and she can continue to stay home till the god lord decides to come get her. im glad your husband is in a good place and getting good care some places are not so good. it sounds like he is doing well where he is thats a blessing.

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