Frustrations of caregiving: Feeling neglected and obligated

Posted by justme111 @justme111, Nov 5, 2021

My husband has kidney disease, cancer
I take care of someone who I sometimes get angry with because he doesn’t listen and now he has all of these things wrong with him and I feel sexually frustrated, neglected and obligated to still help him even if we are separated but are in the same home. There are not a lot of groups to go to now. Hopefully someone is out there that can give some advice.

Interested in more discussions like this? Go to the Caregivers group.

Hi @justme111, welcome to the Caregivers group. I can imagine that you're at the end of your rope and I'm glad that you spoke your mind openly. So often when someone is a patient with intense medical needs like cancer treatment or special diet requirements to manage kidney disease, all the focus in on the patient. So often, the caregiver doesn't get asked how they are doing. It's a job you take on without being asked if you want it.

Am I correct in understanding that you and your husband no longer considered yourselves in a partnership, but that you life under the same roof. So while officially you are no longer obligated to care for him, you feel that you must care for someone in need. Have I got that right? Does he expect you to care for him? Does he want it?

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Hello @justme111 While I'm sorry to read of your challenges, I am pleased you found Connect and our Caregivers' discussions here. I am Scott @IndianaScott and I was my wife's caregiver for the 14+ years of her war with brain cancer.

I actually found Connect as I was feeling overwhelmed, depressed, lonely, and isolated by my caregiving demands and the lifestyle it thrust me into. I had neither the ability nor time to attend any group had there been any in our area, which there weren't. It was the fact I could come into the Connect caregiving community at any time of the day or night and feel like I was with others that I really appreciated. I often found myself only being able to post or respond in the oddest hours of the day, and being an online community that worked just fine! Plus I appreciated the fact others could offer hints, tricks, and ideas of how I could better cope with the relentless demands of caregiving.

I found myself often angry, doubting myself, upset with the demands of my day, which were out of my control, and in my wife's case likes and dislikes, which often changed daily. I often say that caregivers need to remember Superheroes only exist in the comics! Wonder Woman and Superman were never caregivers!

I'm always ready to answer any questions you might have.

Strength, Courage, & Peace

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Thank you for replying and sharing.

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@colleenyoung

Hi @justme111, welcome to the Caregivers group. I can imagine that you're at the end of your rope and I'm glad that you spoke your mind openly. So often when someone is a patient with intense medical needs like cancer treatment or special diet requirements to manage kidney disease, all the focus in on the patient. So often, the caregiver doesn't get asked how they are doing. It's a job you take on without being asked if you want it.

Am I correct in understanding that you and your husband no longer considered yourselves in a partnership, but that you life under the same roof. So while officially you are no longer obligated to care for him, you feel that you must care for someone in need. Have I got that right? Does he expect you to care for him? Does he want it?

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Yes he expects for me to care for him.

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My name is dave and I'm in minnesota and I have not been in your situation so I cant give any advice but what I can give you is a word of encouragement. God puts people in our lives for a reason. Sometimes we dont learn the reason for some time. God has given your husband an angle and that is you. When times are tough on you, just remember there are alot of people in this connection that are rooting for you. We all have different hours to read and reflect so just remember we are here for you 24 hours a day 7 days a week. God bless you and know that you are loved and God doesnt put anything in our paths we cant handle

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@justme111

Yes he expects for me to care for him.

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What a difficult situation you are in. Does he have any friends or family members that you can turn to for an occasional break? It might help you to get away for a few hours or overnight and let someone else bear the burden for just a bit.
We are always available to listen.
Sue

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@justme111

Yes he expects for me to care for him.

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Hello @justme I sympathize with you. I am a caregiver to my husband who has moderate Alzheimer's Disease. I have health issues myself, but I can still manage his care, and he is quite easygoing at this point. It sounds like your husband is demanding. Have you tried to set some ground rules, like I need to rest for 20 minutes, so please don't call me for anything. Is that possible? I've told my husband not to talk to me when I'm on the phone, but he keeps on forgetting!
I realize that a time may come when I can no longer take care of him and he may have to go to a care home. Is that something you have considered? Also, in our state, Hospice has changed its focus. In addition to caring for those who are terminally ill, hospice now provides aid to those with chronic illnesses. Is there an Office of Aging or similar agency in your area you can explore options with? Wishing you the best and the strength to get through this.

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I’m so sorry for your tough situation. I found a hospice to be a huge help, and Medicare does cover it. You make my situation easy by comparison.

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@tsc

Hello @justme I sympathize with you. I am a caregiver to my husband who has moderate Alzheimer's Disease. I have health issues myself, but I can still manage his care, and he is quite easygoing at this point. It sounds like your husband is demanding. Have you tried to set some ground rules, like I need to rest for 20 minutes, so please don't call me for anything. Is that possible? I've told my husband not to talk to me when I'm on the phone, but he keeps on forgetting!
I realize that a time may come when I can no longer take care of him and he may have to go to a care home. Is that something you have considered? Also, in our state, Hospice has changed its focus. In addition to caring for those who are terminally ill, hospice now provides aid to those with chronic illnesses. Is there an Office of Aging or similar agency in your area you can explore options with? Wishing you the best and the strength to get through this.

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Wow! I have limited experience with Hospice; however, if they were to provide aid to those with chronic illness, it would be a Godsend in our case. Thank you for sharing.

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@hbjuniperflat

Wow! I have limited experience with Hospice; however, if they were to provide aid to those with chronic illness, it would be a Godsend in our case. Thank you for sharing.

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No harm in trying, right? They do have certain qualifications to be met but I’m not sure what they are.

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My spouse has metastatic renal cell carcinoma with mets to the sternum and lower spine causing the most pain now. She had a small stroke in early January from a clot that formed because of her cancer med and being off blood thinner for a few days for a vertebroplasty. Realizing from Palliative Care providers expertise that she isn't going to get better or even stronger for a short term, we have become Hospice patients as of one week ago. My spouse was determined to get to Arizona, where we usually winter and have a big support group, as opposed to our summer residence which we just moved to the end of November.

She survived the trip, has seen friends, has been in the pool once, has seen midwest friends who are also here for a short while, and now she seems to be letting go. I'm tired, but relieved to be among so many friends who can help.

Don't know how this note will help anyone, but I haven't logged on for a long, long time and just felt the urge to write something. Thanks for listening.

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@deek15redpeppers

My spouse has metastatic renal cell carcinoma with mets to the sternum and lower spine causing the most pain now. She had a small stroke in early January from a clot that formed because of her cancer med and being off blood thinner for a few days for a vertebroplasty. Realizing from Palliative Care providers expertise that she isn't going to get better or even stronger for a short term, we have become Hospice patients as of one week ago. My spouse was determined to get to Arizona, where we usually winter and have a big support group, as opposed to our summer residence which we just moved to the end of November.

She survived the trip, has seen friends, has been in the pool once, has seen midwest friends who are also here for a short while, and now she seems to be letting go. I'm tired, but relieved to be among so many friends who can help.

Don't know how this note will help anyone, but I haven't logged on for a long, long time and just felt the urge to write something. Thanks for listening.

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I am so happy for you and your wife to be able to get to Arizona. When my dad had stage 4 liver cancer with metastases he also decided he needed one last visit to his Winter Texan home. He entered hospice there and my sister and I were able to be with Mom and Dad at the very end. The support was far more than she would have had at home in the dead of winter.
We are now Winter Texans ourselves, and my husband and I are honored to support friends, our "family of choice", as we all face the trials of aging and end of life.
It is a true blessing to be among many who understand what we face, and be able to grieve and celebrate life together. We just shared dinner with a woman who lost her husband 10 years ago this month, she has become one of our dearest friends, and a model of how to face loss and move forward.
Please accept all of the love and support your friends offer in this difficult time. Your life and theirs will be richer for it. My thoughts and prayers are with you.
Sue

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