I’m my 77yr old mother’s full time caregiver. She suffers from frequent UTI’s and has been taken to the ER twice once in March and again in April. My mother can’t do anything for herself and is totally reliant on me for everything. She can barely talk. She had a massive stroke 4 years ago. Due to this Corona Virus the hospital refused me entry to go with her and stay with her. During her stay there alone her health rapidly declined. I called everyday asking about her and all I got was “no change” When I finally did get news 7 days into her stay there it wasn’t good. They told me she was severely malnourished, couldn’t swallow anything by mouth, she was non-verbal, had advanced dementia, congestive heart failure, MRSA, and a UTI. I was shocked because when I called 911 it was for a UTI and dehydration...not all this. They then told me she needed a feeding tube or P.E.G tube whatever it’s called it’s in her stomach. Okay after another 5 days she came home...before she left she had 2 pressure wounds one on her butt and another on her butt cheek. Now she has 11 of them...lost so much weight...and just doesn’t seem like herself. I know my mom better than anybody and I see she’s not well...I’m 33yrs old and have been doing this alone. All my family is gone...she’s all I have. She doesn’t want to die or she’s just saying that to appease me...I don’t know. She’s declining fast.. she’s eats a little and drinks plenty but she’s losing weight fast even with this feeding tube. Am I being selfish to not give up. Every nurse and doctor that we see constantly says she’s dying and she hears that and then she closes in on herself...becomes dazed and ignores me and the aides. She plays possum to get us to leave her alone. Then after that comes the pouting and tantrum and then the anger and spite. I’m her baby. She has 5 children from her first marriage. And I was born 20 years after they divorced. We can’t get along. They feel like she “abandoned them” to raise me and it’s my fault she didn’t get back together with their dad. Who was an abusive drunk. So they never come around and mom throws that in my face when in her moody ways. I’m so stressed and hurting that I don’t know what to do anymore. It seems too easy to just give up on her and it pisses me off that people are trying to force me into doing that. What should I do? Follow my heart or Fall in line with what others want
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You want to get to see her admission notes, and then compare them with what you've been told. She must have been assessed when she was admitted. What sort of doctors are giving you this opinion?
Meanwhile. If you compiled a kind of diary of the last four years, what would it say about your mother's quality of life, do you think? Were there any times or phases when she seemed to be making a good recovery from the stroke?
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You have done your very best for Mom. I realize how hard this is for you. But its time to let her go. Hospice is not there 24/7. You can still have time alone and care for her. What you have described means that Mom will not get better. Her skin is breaking down. Her heart no longer can pump well. This means water retention. And Dementia, probably from the stroke. Hospice will give her a peaceful passing.
You can't stop her from dying. Everything alive dies.
All of us have had situations during the last few months that have caused us concern, discomfort, anxiety, and no question, anger. Is it “unfair” that her “first” family has abandoned you both? Sure is.
If she’s “declining fast”, she may have reached the point at which you cannot, for her safety and welfare AND YOURS, take care of her as you have done in the past. I’m not sure why you consider your motives selfish, or not selfish. You cared for her for a long time, and as she has aged, what you were able to do in the past isn’t working any more, and that’s a FACT.
Are you feeling guilty for that? I ask because you make references to her very limited use of speech/language, but then seem also to feel somewhat victimized by her anger.
The isolation of caring for someone who has experienced a significantly debilitating trauma is one of the toughest parts of the experience, as far as I’m concerned.
What are you doing for yourself? JUST for yourself. Are you able to accept the fact that your life is seriously out of balance in relation to what you are expecting of yourself to do? Are your expectations for providing your mother’s care out of line with her potential to get better?
I live in a “hot zone”. ALL OF US, no matter where we are, who are caregiving have experienced some jarring event during this awful time, and all of us are attempting to reach some sort of positive way forward. When you’re thinking in terms of “too easy to just give up on her” and “force me into doing that” rather than “how can we move forward to assess her needs and address them?”, are you giving yourself the chance to make the best decisions you can, given the fact that you MUST consider making the best choice of less than positive outcomes.
All YOU can do is your BEST, and anyone who expects anymore of you than that doesn’t deserve the honor of being listened to. Your situation is a tough one. If you focus is not solely on what you yourself can do, but totally on her welfare, it might help, and if you then focus on what you can fairly expect for your own welfare, that may help you too.
I second the calling Hospice.
Hospice does NOT mean you will die in 6 months or less.
Hospice does mean you will get help.
The fact that your mom had 2 pressure sores prior to going into the hospital means several things. She is not getting enough circulation to the areas where the pressure is.
This can be helped, and pressure sores can be prevented by :
Proper mattress and changing her position at least every 2 hours.
the fact that she developed more while in the hospital is not good.
Hospice has nurses that specialize in wound care.
You will be able to get a mattress that will hopefully help prevent more sores.
You will get a nurse that will check on her at least 1 time a week and you will get a CNA that will help with supplies and help care for her for a few hours a day 2 or 3 days a week.
Loosing weight is one of the slippery slopes that can lead to EOL (End of Life).
Personally I would not do a feeding tube unless it was for a very short time for example allowing recovery after a surgery. In a case like your moms I would not do a feeding tube.
You are not "giving up" on her.
Calling in Hospice will allow your mom to be comfortable during the time she has left.
Calling Hospice will also help you understand what is going on, you will get the support that you so need. Both physical support and emotional support.
You have done a great job for the years that you have cared for her but no matter how good of a job you do there comes a time when the body just can not take it any longer.
The best thing to do is let your mom know you will be alright, you will miss her, you love her and you have learned a lot from her.
Even after your mom dies she will be with you, every time you do something that you learned from her...she lives on, every time you cook a favorite meal...she lives on.