Going from carer to caree. How did you find the energy to do it all?

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Going from carer to caree. How did you find the energy to do it all?

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Back in Feb I was diagnosed with end stage liver disease. Sigh, so now I am being cared for. I no longer have the energy to run her or her errands. I don't know how things will work out but I feel like I am abandoning her (mother) although we did discuss an alternative living arrangement in due time. That talk went ok she actually brought it up. I'm sure there are many who have struggled with their own illness while caring for a parent...how did you find the energy to do it all??

Care Decisions Family Caregiver Senior Health Terminal Illness

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Imho, you will not have the fortitude to care for yourself AND your mother. I am so sorry for your diagnosis. You may want to pursue those alternative living arrangements for your mother sooner, rather than later.

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My prayers go out to you.

Part of your post tells me that you struggle with energy. Unfortunately, lack of energy is part of your disease process. The best way to handle energy is to farm out whatever tasks you can - family members, friends, members of faith community, and/or paid help. Save your energy for things only you can do. Other strategies include: strict adherence to your diet, getting at least 7 hours of sleep every night, and planned rest breaks throughout the day. Don't take any medication without consulting your doctor since the liver processes all medication.

Part of your post tells me that you struggle with expectations. The expectation you had lived under was "children take care of elderly/infirm parents." You may need to give yourself "permission" to move from doing all the hands-on care to allowing others to do the care tasks. If you are making sure your mother's needs are cared for, you are doing your job of "making sure mom is cared for." Your condition should allow you enough energy for this role in your mother's life.

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I’m so sorry you’ve had this diagnosis. My heart goes out to you xx You must now take the time you need for your own health. I understand the guilt feelings - I’m having to step away from being grandad’s carer because my mental health has taken another nosedive and grandad needs to be kept safe mentally and emotionally - I know I can potentially be a risk to him if I don’t step away and I get worse. I’d never physically harm him but the risk is of neglecting him or causing emotional harm. I’m not prepared to let that happen but stopping my caring role is going to be extremely hard. I’m sending out a massive virtual hug and lots of love xxxx

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Years ago I was in that position....I had to work to put food on the table and my mother was very, very ill and needed care but I had to keep her at home as there were no funds or other family to help. I had one hour for lunch and used it to come home and check on her - left me l5 minutes to eat before I had to go back to work. Over time, it nearly killed me - it was harming me both physically and mentally. She passed before an extreme amount of time went by but looking back, how did I do it and survive? I don't know.

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Hello. I liked the answer from nancyIS.

is an assisted living facility feasible ?

if the two of you share a room it may be cheaper than two separate rooms with the possibility of splitting the cost plus food for the “extra” person. It might not be full price for each person.

im sure that makes no sense since it doesnt when i reread it but a facility “should” know what i mean ???

of course when one person dies the full cost goes to the survivor.

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I haven't. I had to find the energy to use my mouth or a pen (dad is deaf) to say NO more than once, so I am cast as the ungrateful daughter more often than not because this greatest generation 104 year old can't comprehend that I am recuperating myself from a near death illness last fall. At that point I was killing myself to take care of them, and I felt it was payback for all they had done for me including my living under their roof. But I am not his wife he took for granted all 70+ years of their marriage (well maybe not 70 as the dementia set in before that point). I don't know how old you are; if you are senior yourself especially, there are some programs out there to help with respite that may help your mother? as well. Contact your local city hall, or research area agency on aging for your location. Take advantage of what you can. The idiots in the hospital convinced me to go go rehab which was paid for out of pocket and a total waste. When I think of how many hours of private hire help we could have had for that, or food we could have had delivered it makes me sick! But I began to more focus on me. My father in spite of his age is driving and quite resourceful for what HE wants and they managed. They had to while I was in the hospital/rehab. It might be very worth your while to find a CERTIFIED elder law professional to help get papers in order if not already for both of you. They are also a wealth of information on resources and it may give you some other ideas. Who is taking care of you? Is hospice involved? I would hope that organization or plan would consider mom's future needs as well. Wishing you all the best....

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Best wishes for you and your mother. It's so tragic when the caregiver needs care. Despite our best intentions things do not always work out as we planned. Please take care of yourself and work with your mother to find a long term care solution for her (and you). You are not abandoning her. Try to get her situated where she will be safe and cared for, as needed.

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I am really sorry for your diagnosis. It is a medical condition in which you can get pallitive care. That would get you a SW and councelor to help resolve feelings and help work on a long term solution for mom. Enjoy your days. Best wishes.

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I am so sorry that you are experiencing health issues. Please take care of yourself. Mom is going to adapt to whatever you choose.

I will keep you in my thoughts and prayers.

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So sorry to hear your recent news. I have always been blessed with good health until this past year. And caregiving does seem to be one of the most exhausting situations. When I was in the hospital and being tested for one dire disease after another, I thought what will I do about DH aunt?! That began a series of calls and conversations on which facilities were available and how to increase her care. Like you I had talked it over before but found I was woefully unprepared for the reality. I do know that every layer of help increased my energy. Even small things, like extending her aides hours, placing her on hospice, my husband taking over all aspects of food purchase, prep and serving, All those things helped. In your situation, I would try for total transfer of the responsibility and not even try to do it all. This way you can be of some assistance in providing needed information and just be the daughter who may or may not feel up to visiting. Just be the valuable consultant when it’s really really needed. Reserve your strength. Let mom take care of you a bit with helping you let go of the responsibility for her. Again, I’m sorry for this difficult time. Sending you best wishes.

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"In your situation, I would try for total transfer of the responsibility and not even try to do it all. This way you can be of some assistance in providing needed information and just be the daughter who may or may not feel up to visiting. Just be the valuable consultant when it’s really really needed. Reserve your strength."

Exactly. This is NOT abandoning your mother, but rather ensuring she WILL be cared for when you can't do it.

"...we did discuss an alternative living arrangement in due time. That talk went ok she actually brought it up."

This is good news. SHE brought it up and you both discussed it. If you are working with her to arrange for her care, how is that abandoning her?

Here's abandonment:

Last time OB was in the area, I suggested he go to DD and bring "treats" to mom and visit with her in MC before we tackle condo duty that day. Since he isn't local, he won't get many opportunities. It wasn't a long visit. Another day, too late to start more, I suggested he go again. He flat out refused, saying he "didn't know what to do with her." So, even if he lived locally, I doubt he would have visited. I made a point to go at least once/week, sometimes more. YB is closer, but working and someone wrapped up in his own little world. It became such a chore to try to get an answer from him regarding various special meals/days at the facility that I stopped asking. I have no proof, but I believe he just stopped going.

You, on the other hand, are working on a solution and doing the best you can. You are NOT abandoning your mother. If nothing else, handing off the harder part of care-giving can make life easier and leave you with more energy so you can spend quality time with her, rather than sucking out your remaining life with grueling tasks!

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You don't have ages. Mom, if she has the money, may need to go into AL. You can no longer be her caregiver. Call Office of Aging and see what resources they provide. Usually a Senior busing is one of them. Mom is going to need to make adjustments.

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This is the hard part.
You learn to delegate
You learn how to accept help
You learn how to say NO..when it comes to others needs or wants.
You learn how to say YES..when it comes to your needs and wants.
Odd thing though for caregivers this is how it should be all the time.
You should know your limitations and not push yourself. Isn't that one of the 1st rules of caregiving...care for yourself first...Easy to say, hard to do.
Sad statistic is a lot of caregivers die before the person they are caring for.
I am so very sorry to hear of your diagnosis
OH, you can't "do it all", no one can.

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You just simply cannot do it all, Doberman Lover. I am so sorry to hear of this for you. Liver problems honestly cause the greatest and most profound exhaustion. The kind of thing where you simply collapse onto the bed. You cannot go on. And you know that. We have prior evidence of your great loyalty to family. But we are human, not Saints, and we have limitations. You are smart. You already recognized that this time might come. And here it is.
When I took on the financial POA for my bro, Trustee of his Trust after his diagnosis with probable early Lewy's I recognized that while he was 83 I was only 7 years behind him. And there were things I simply COULD NOT do. I don't know that I ever could have done inhome care. In fact I believe I could not have. Just my own personal limitations. Good at being a nurse for 8 hours. In need of 16 hours off after that.
I think you already know all the facts here. I think you are bright and know what you have to do. I don't think you can expect this to be without mourning, without grief. It is WORTH grieving over. Alway remember my old adage that Guilt is for Felons. You are in for some pain and some grief. I trust you to know what to do.
And again, I am so sorry. What miserable timing this is. As though there were ever a good time to get ill. You owe yourself the best self care you can give yourself now, and any extra strength I know will come your Mom's way with visits. This isn't abandonment. This is illness.

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Going from carer to caree. How did you find the energy to do it all?

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