Gave up job to help care for my mom who is on hospice - Having regrets - Disappointed. Any advice?

Hi. I’m a bit confused about you opinion that she is not needed there if in hospice. Hospice nurses do not provide care or give meds. At least from my experience. They were available by phone. I provided all care and meds.

It's OK, hard times, your life is all over at the minute, two small children and a hospice, it's OK to feel angry, rest well, when you can, everything will pass, xxx

I too am caring for my 88 year old mother with mild dementia. It all started in January when she came down with pneumonia. She was hospitalized and when released, I was the only one able to care for her since my 3 siblings still work. I brought her to my house and I have been miserable ever since. I never thought she would be here so long. Before she can return home, we scheduled a neuropsych exam, but even that has been postponed due to Coronavirus. Just like you, I have moments when I feel so guilty for thoughts I have, cry frequently, and dont want to get up and face the day. I want to get back to my life. Two of my siblings are virtually useless; they are in denial of mom's condition. I am hoping she can go home soon because I am hating my life right now. My husband is unemployed, and my adult stepson is living in our basement going on two years! I want to scream. My mother isnt cruel or nasty, just quiet, bored, and constantly wanting to go home. You need to care for your family and yourself. Otherwise, you'll be no good to anyone. Good luck and give those kids of yours extra hugs!

Dear Stress,

I have 2 words for you: Get. Out.

I don't know how to tell you how to do it, because I don't know your situation. But if it's not working for you, which it clearly isn't, then you need to figure out how to extricate yourself. It's ok to change your mind when things turn out to be so clearly bad for you. AND your children.

There are always more than 2 options ("I do nothing and I'm a bad person" or "I do everything and I martyr myself."). You're not really helping anyone if you're not happy. Get out of there, resume some semblance of your life, find some other ways to help your folks that don't destroy you. Anyone who judges you harshly probably hasn't been in your shoes.

Oh my dear. I gave up a good job to to take care of my Alzheimer’s Parkinson’s sweet mother. She moved into our house a month after my husband and I got married and she lived with us for almost 5 years.

I can tell you these words from the other side so to speak as we just lost my mother at the end of January. I am glad her journey is done and I miss her terribly and though it was extremely difficult for me at times and often very depressing to care for her, I can look back now and be so proud of the care and love that I was able to give her. It truly was one of the most amazing And hardest things I have ever done in my life. I know it is so hard.

I would implore you to get help. I had a caregiver come for four hours, five afternoons out of the week for two of my five years of caregiving. Most of the time I felt like I had to entertain my caregiver, and stuck around the house, but there were times where I could escape to the closest hobby lobby and forget about my situation for a bit.

Your dear dad is not going to change, so try to just let his comments roll off. This is a difficult time for him as well. Growing old is not for the faint of heart as there is so much loss and hardly ever any gain.

Your situation is more difficult, having your small children, but again get some help in. Hospice can come in and watch your mom for a couple hours a week.

If in the end you decide it is too much for you and you can’t do it then stop and carry the feeling that you did your best.

Caregiving is a tough job, the toughest I have done. We have no experience in it, we don’t talk about it, and we have no education in it. It can leave us very isolated and again, just downright depressed.

As I mentioned, my perspective is different as my job of caregiving is done for now. I can look back though and be so thankful that I had the opportunity to care for my mom in the manner in which she deserved.

This is a great forum to just get your feelings out. I posted before here that I just didn’t want to care for my mom anymore and then I regrouped and went on to the next day.

Best of luck to you! Remember, you’ve got this!

Slow ride... take it easy... absorb, this is temporary... It is okay... When she passes, then you will guilty of these feelings too... It's lose-lose situation. DO NOT FEEL GUILTY

Take it easy on yourself.. You are doing the best that you can..

When dad gets cranky.. remove thyself from his presence. Just step out, and tell him you need a break...or don't say anything at all. He is going through this too.
EAsy does it. breathe.

Glad to hear that you are getting a break. I hope that you arrived home safely and that you and your family can enjoy less stressful times together. This trip home may also give you time to examine whether or not you can keep this up. I hope things works out for everyone.

If your mother has pain, she or your dad need to call the hospice nurse.

Ativan is not a pain killer.

I vote for your staying put and enjoying your family this week.

Is she really ready to go, or just ready and manipulating you to return for more? I would stay put.

Stress, let me go back a bit.

You gave up your job and took your kids to be with mom and dad because she has stage IV cancer and is on hospice.

Has hospice given you an idea about how long she has? Is this an aggressive cancer or a slow growing one?

Are you there because mom needs caregiving round the clock?

Is there a reason for you to go back if you're being treated so poorly?

One of the goals of hospice is to keep the patient comfortable and pain free. Is mom not making use of the pain meds provided, or does she not tell the hospice nurse how much pain she is in?

I hate the new format where there are subthreads. Here's what Stress2020 wrote that I managed to hide when I replied. If you go under Grace21's post from April 27, you can like her post there. This is just to make it noticed by more folks.

(Stress2020 writing April 29) Hi Grace, thank you for your reply and kind words. My children and I left my parents' house and arrived at our house around 8pm this past Monday night. We were so happy to see our home, my husband, their father, our animals! We had been away from our home from March 6th to April 27th (52 days).

We had such a nice day today. The weather was beautiful. My son played on his slipnslide, had a watergun battle withe his dad, flew remote control helicopter, rode his bike, rode his scooter, had the freedom and space to run in the backyard and house( much more space at our house). Overall a wonderful day.

AND THEN CAME NIGHT (tonight). My husband grilled out. We were all sitting together at the table having a wonderful meal and nice time together. First family meal (me, hubs, and two kids) in I don't know how long.... My mom called while we were at the table. She told me that she is ready to go. She said that she is ready to die. She said that an hour before she called me she told my sister and dad that she was ready. She said that if she could take care of it herself she would! She said that she has more pain now in both legs and it's harder for her to get up and move around.

She told me that she took 2 ativan at the same time which she hasn't done before..

I had planned on relaxing here at our house until Saturday, and then I had planned on leaving our house early Saturday AM to head back to my mom's house to stay with her a while. My sister has to work This weekend, and my dad will have to have some help. So, I had planned on going......

BUT NOW...... Now..... I'm debating whether or not I should continue with our much needed break until Saturday, or leave Thursday?

I was so enjoying our time here and then 😥my mom called.....

Stress2020, Your mom is a guilt master. I'm so sorry. If you are worried she might have od'd, call her local non emergency police to report it. Let them do a well check on her. Call the hospice company and tell her this info as well. Tell them she needs more help than you can give; that your father and the other sibling don't help and you must take care of your family. They will get people in there - volunteers and hospice employees- to help as long as you do your part and take care of your children and husband at home! If your mother has a way to avoid having other people help, she will not use them but use - and I mean **use up** - you.

Don't go back until hospice calls that it is the end. She knew what she was doing, that you would be sitting down to dinner, and she was yanking your chain. You want to remember her good times, not the resentments you feel because of her manipulative behavior.

Stress2020
I am glad that your evening with your family started out so well. While I was reading your response to my post I could tell how much you were enjoying being in your own environment again. I even smiled while I was reading it because I was happy for you. Then I got to the part about mom calling you and saying that she had taken 2 Ativan, which she hadn't done before. Please don't fall into that trap, you don't know how long your mother will live and you are already stressed out. As long as you continue to prop mom and dad up they will lean on you. I am sure that the last thing you want to happen is to get sick yourself and then you will feel even worse than you do now, because you may not be able to take care of your small children and they need you. Please tell me that you did not return to your parents home early. It is an honorable thing that you are assisting your parents but at what cost? Please listen to the folk on this forum because for a lot of them this is not their first rodeo. The responses may seem harsh or blown out of proportion but we don't want you to experience some of the same things we have. If you have returned to your parents home please get a break again real soon. On second thought if you have returned to your parents house please take your children and run home to your husband now because you have no idea how your father will fair after your mother passes and you may just end up stuck in the 24/7 caregiving role again. Stay strong and please let us know how this works out for you.

Stress2020, my sister pulled the same thing every single time that anyone put boundaries in place and enforced them.

I started turning my phone off overnight because she felt that 130am was a good time to have people rushing across town to hold her hand.

Obviously fear is a factor, however, being worn to a frazzle by the games doesn't make a compassionate caregiver. You, your husband and your children need this week together.

Honestly, if she dies you weren't meant to be there.

Take care of you and let them think about the awful way they have treated you. It will do them good to know that you have boundaries.

The brain physically changes during aging and many seniors are no longer physically able to control negative or nasty thoughts or comments. In addition staring death in the eye while in great pain and still being cheerful and upbeat is a lot to ask. Your life shrinks down to nothing but the pain and the situation. You think you will not be difficult when you get in that situation but you will. Not to say that any caregiver should accept abuse but understand some of that is not necessarily what the senior can control.