Caregiving: I’m frustrated and exhausted.

Posted by dem2301 @dem2301, Tue, Jun 18 10:23pm

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.

@kimspr3

Hi Becky, When people care I appreciate it so much thank you so much. People caring is so rare It always makes me cry. I see a Psychologist only when my husband can bring me. About once a month I can't sit long, stand, long, bending I use one of the handicap sticks for laundry etc. Hard to shower, bending, twisting so sponge baths. I would like a support group, clergy, it's getting there. I live in the country everything is spread out. I called clergy, there was no one close to pick me up. I never thought of calling Assistance for the Disabled. I promise I will do that after the holiday. I will look into what you suggested. I"m here also for others. Will you be going to a BBQ? Hope you, are feeling good today?

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@kimspr3 Kim, start writing down your thoughts, on a computer if you have one, or by hand. Or speak and record your thoughts. I know from experience that saying what you are feeling out loud, let's another part of your brain listen. I like to longhand write, and later will look at how I wrote, not just what. Pretty enlightening, let me tell you! Some people just cannot get a clue how to treat a loved one in chronic pain. Perhaps have a friend explain it to him, instead of you. We care here.
Ginger

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@kimspr3

You have a right to vent. Holding it in is not healthy. You are right, no wants to hear it. Today was a bad day, I text my cousin I guess needed to talk because I wanted to end this. My husband gets me going, sarcasm I wanted to scream and I did. His response, "something is wrong with you!" I felt, how to get away help me. I thought of "that" so I needed to calm down or what ever. Never responded. People don't want to hear it. Children, not all but run away. I learned my lesson. I go to no one! Hope your feeling a little better or better than a little.

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I cry.
I sob.
I breathe.
I collect.
I decide to focus on one thing I can do for him, and some one thing for myself. It’s sometimes (but not always) the same thing.

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kimspr3, you might try getting a small shower chair and a handheld shower head. That worked for my husband when he was unable to stand anymore.

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@rmftucker

kimspr3, you might try getting a small shower chair and a handheld shower head. That worked for my husband when he was unable to stand anymore.

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@kimspr3 I really like @rmftucker ‘s suggestions about the shower chair and hand held shower. I would also add having hand rails installed and a non-slip mat inside and outside the shower. The Council or Agency on Aging should have helpful suggestions. Before I came home from rehab, an occupational therapist therapist inspected my house for safety. My husband pulled up small rugs, put in motion detector lights, and fixed the bathroom like above. And my neighbor came and installed small ramps at doors since I was using a walker (rollator)! Is there an Agency on Aging in your area? Or someone who could help you brainstorm? Will you let us know? We care about you and your safety.

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@colleenyoung

Hi Kim, I brought @rckj into the discussion by mentioning her @username. You don't have to do anything. If she gets the message, she'll join the conversation.

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@colleenyoung @kimspr3 Hi Kim, Colleen, this is Rhoda @rckj. Kim, how can I be helpful? Happy to and I get the gist of the thread about caretaking? I have been ill over 10 years with Addison’s Disease (adrenal failure).
I have other illnesses that are either caused by the original disease or are just there. Life is tough but there are also wonderful things. Just as I was getting sick I met and then married a wonderful man. He is protective of me and worries, although he doesn’t always say so. I worry about what all this does to him, having watched so many times where I am critically ill. I wrote a thread about taking care of him and doing things that I could do to create joyful times for us. The idea was suggested by another member, @rosemarya . I think the thread is on the post intensive care site around April of this year. I often apologize as if it was somehow the illness or my need for help was my fault. Logically I know that’s not true but logic only goes so far. I’m working on it but it is hard. I think right now I may be only marginally helpful as I’m coming in to this in the middle of the thread. How can I help? Best wishes, Rhoda. @rckj

I

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@becsbuddy

@kimspr3 I really like @rmftucker ‘s suggestions about the shower chair and hand held shower. I would also add having hand rails installed and a non-slip mat inside and outside the shower. The Council or Agency on Aging should have helpful suggestions. Before I came home from rehab, an occupational therapist therapist inspected my house for safety. My husband pulled up small rugs, put in motion detector lights, and fixed the bathroom like above. And my neighbor came and installed small ramps at doors since I was using a walker (rollator)! Is there an Agency on Aging in your area? Or someone who could help you brainstorm? Will you let us know? We care about you and your safety.

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Becky Hello, Not been on line. Thank You so much, I could not ask for more from all of you!!!!!!! But, come to me also, Smile. I have to tell my husband about the rails in the bathroom ETC. Primary Care Dr. sent the Visiting Nurse, OT, and PT. It was sad when they left, did not last any more than 3 weeks. Only because there is nothing more than can do. 4th I went to a BBQ for 2 hrs. It was good to get out, dressed. Please tell me how you are. Can't use a shower chair because sitting is difficult. I don't know if I mentioned, I have Flat Back Syndrome. My Lumbar Spine doesn't curve anymore. I try to sit having dinner with my husband or if can't I just stand. Your husband is thoughtful and cautious. I won't use a wheelchair yet. I remember my mother saying that to me and now I'm saying the same. She had Post Polio Syndrome. I promise I will call on Monday. I called Dept. Of Aging before nerves thought to ask the questions. I hope your having a good day!

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@rckj

@colleenyoung @kimspr3 Hi Kim, Colleen, this is Rhoda @rckj. Kim, how can I be helpful? Happy to and I get the gist of the thread about caretaking? I have been ill over 10 years with Addison’s Disease (adrenal failure).
I have other illnesses that are either caused by the original disease or are just there. Life is tough but there are also wonderful things. Just as I was getting sick I met and then married a wonderful man. He is protective of me and worries, although he doesn’t always say so. I worry about what all this does to him, having watched so many times where I am critically ill. I wrote a thread about taking care of him and doing things that I could do to create joyful times for us. The idea was suggested by another member, @rosemarya . I think the thread is on the post intensive care site around April of this year. I often apologize as if it was somehow the illness or my need for help was my fault. Logically I know that’s not true but logic only goes so far. I’m working on it but it is hard. I think right now I may be only marginally helpful as I’m coming in to this in the middle of the thread. How can I help? Best wishes, Rhoda. @rckj

I

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Hello rcjk, You helped already. I have never met so many, sincere, caring People. It does my heart good! For me it means so much. I have PTSD and I know you all are sincere. Meeting your husband was a "Love Story." I to try to do funny things to make him laugh, make sure his laundry is done, Healthy good meals. He seldom shows feelings, I will look into the Post Intensive site, April. My husband is not protective I used to be able to handle that because I was Independent. I worry also about what this does to him. I always say "I'm sorry" "I feel so guilty" I took know it's not Logical. I'm tryingcnot to do that but he is not a communicator, I am. What is he thinking? It was nice meeting you. Wishing you both a Happy Day!

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@gingerw

@kimspr3 Kim, start writing down your thoughts, on a computer if you have one, or by hand. Or speak and record your thoughts. I know from experience that saying what you are feeling out loud, let's another part of your brain listen. I like to longhand write, and later will look at how I wrote, not just what. Pretty enlightening, let me tell you! Some people just cannot get a clue how to treat a loved one in chronic pain. Perhaps have a friend explain it to him, instead of you. We care here.
Ginger

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Hi Ginger, I see a Psychologist she had a session with my husband. He's Passive Aggressive. I found a good site on line and it explained P.A. so well. He read it, agreed and that's the end of that. Today the remote to my pain pump is not working properly I told him he walked away. Yet he did a lot of work around our home. I Thanked him. My Psy. as you suggested told me to keep a ledger. I have been doing that on and off. Coloring is a big help. I appreciate your protection. You will never know, I can't explain it. Thank You I hope you are comfortable today!

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I feel the same for all of you. I wish we could all meet one day. Thank You.

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@shirleymac

I can truly sympathize, even though my situation is different from yours (dementia and a stroke). I find myself sighing a lot, even when I don't need to. I am so frustrated with the total lack of support or understanding from my husband's family. I feel very trapped some days and find it difficult to keep up with friends, much less see them. I would love to take a break away from my husband, just to regroup, but this seems very unlikely/impossible. So far, my health is holding up, but I am on more meds than before and some days that is not enough. I guess I am venting, too, as well as sympathizing. Try to find some time for yourself. I go to book club about once every 6 weeks. That's not much, but it helps. I take our dog for a walk at least once a day. I'm out, but nearby. I hope you can find help with your caregiving. We all feel overwhelmed, sometimes, and other caregivers understand. Feel free to vent any time!

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you will be in my prayers that things get better in your living situation. i am a care giver for 2 92 year old ladies my mom and my aunt (twins). its ok right now they are still independent but my aunt probably wont be much longer. i try to be as giving and caring as i can but both of them are always trying to apologize to me for putting me out. i said i do all this out of love for both of them and i k ow its the right thing to do and they have no one else but me. all i want to hear form them is im making their lives easier and they love em and appreciate what im doing for them. it comes form the heart/ i NEVER want either of them to ever feel guilty or say im sorry for me being there for them. im retired and sold my home and moved here to do just what im doing when they let me. they are stubborn and still very independent so i make sure every day i let them know im here. i let them do what they feel they can and i pick up the slack. do most of the driving to dr appt and take them shopping sometimes ..but again they are stubborn and at least mom is still independent. take care and again you are in my prayers

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me being a caregiver for my 92 year old mom and her twin sister my aunt is knowing i will lose them one day and mom is my best friend, thats the hardest part for me. the helping is easy and done with love. they are not ill they are just aging and slowing down thank god no terminal illnesses but it ts the pain on knowing i will lose them one that that is hard for me. just a thought form a caregiver !

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Are they able to get around?

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My 92 year old neighbor would wear mini skirts, and would only hang around young people. She always tried to make the very most out of each day. If you focus on losing them, you will miss the present. My mother was sick the last years of her life, and it would get exhausting, so I understand that part of what you are going through. We always found things to do with her. Don't think about losing them, concentrate on making lasting memories.

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@evett

Are they able to get around?

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who are you responding to ??

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im doing that also me and mom do things and i have to just spend time at my aunts and she rarely leaves her house only to show for food and go to the doc but me and mom go to church and other things. we are talking about the movies and maybe even trying some fishing but when its cooler. But losing her always stays in the back of my mind as i have no idea what i will do when i lose her as she is all i have. i have watched over her and protected her and taken care of her my entire life. my father was not a nice man very abusive so i always had to protect her against him. i was also a cop for over 25 years so its in me to take care of people/ the more i try to not think about losing her the more i think about it. it is inevitable who knows when but i know i will have to deal with it one day. my family is real small now and most have passed and the ones still alive even my brother and sister are not close to me. it will be a shock to my life and i will be lost as to what to do when she is gone.

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