Mamma is on her 11th year of living with my husband and me. Since my daddy died, our lives have revolved around mamma. We have moved twice, both times building a house that included a bedroom, living room, and handicapped bathroom just for her.
My mother just entered in-home hospice. I am bathing her, taking her to the toilet, dressing her, etc... I am feeling guilty because I want this to all be over for her (to relieve suffering) and for us (so we can get our life back and spend more time with our kids and grandkids). We are both so utterly exhausted.
I feel so bad because, today, I was looking at the average timelines for preactive and active death, trying to determine when we all might have some relief. My worst fear nowadays is that this situation will drag out.
What is wrong with me?!?!?!
Just a note; if your mother is under hospice care, THEY should be bathing her, not you. A CNA should be coming in 2x a week to do that very thing, and helping out with various other duties as well.
Wishing you all the best as you help your dear mother transition to the next phase of her eternal life. Death is not the 'end'........just a new beginning.
I am bathing mom as a gift to her as she usually enjoys being really clean. I would even add a few drops of lavender essential oil to her lotion and blow her hair dry.
I think that is about to change. She wanted me to hurry last night as she felt really bad. She has been very weak and is hurting. So, the CNA baths might really be what she needs now.
I would have a frank conversation with her hospice team. The Holidays are coming. If she is not truly in her last days, perhaps they could arrange for her to spend a few days in a facility so you could spend time with your kids and grandkids.
Again, please don’t feel guilty because of how you feel. Sending hugs...
You say, "If she is not truly in her last days..." How do I know? She is sleeping more, is weak, is delusional, hurting, is eating / drinking very little, and saying that "God is calling her and it won't be long." Does that sound longer term?
https://www.healthline.com/health/signs-of-death#sleeping-more
Also, look out for a bluish tint to your mother's hands/arms and lips, which is a sign of cyanosis and that she's nearing the end.
Sending you a big HUG today, my friend. This is never easy, I know. It's lovely that you've been giving your mom baths with lavender oil. You are a special daughter, that's for sure!
My LO is also end stage, on hospice. It's such a mystery to me. I keep wondering if there is some kind of unfinished business she has. I don't think so.
I would rely more on hospice to help with the baths, though, I understand your desire to make her feel special and close. It's a minute by minute thing, though, I've been told by hospice staff that they will let me know if she takes turn toward the end.
My caregiving days just ended not long ago, not happily, but that is another story. I feel your pain! I truly do!
I had mom in my home for nearly 15 years and cared for her in her home along with my dad for many years before that. So I get it!
I also cared for my oldest brother. He had hospice. At the end of his life he went into an ‘end of life’ facility that was a Godsend! Does your hospice organization offer that?
Please inquire about this and take advantage of it.
I hear in your posting that you are headed for a breakdown, burning out or both! Trust me, I understand. I burned out. Please do not feel any guilt or shame over what you are feeling. Yeah, I know, easier said than done. I went through exactly what you did as far as emotions. It’s so hard! Very hard! Extremely hard!
I wish the very best for you when your caregiver days are over. You will grieve. That’s normal too. You may experience more guilt, the dreaded ‘what if’s?’ You will experience relief. That too is normal.
Please if you can, look into respite care as well. Does your hospice organization offer this? If they do, I strongly urge you to take advantage of it.
Hugs! More hugs and more hugs!
Your thoughts are VERY NORMAL.
Also shallow breathing.
There is a book called Final Gifts.
Get it and read it asap.
It was very eye-opening for me.
Thanks for your kind words. My mom didn’t die. She doesn’t live in my home anymore. She just turned 94. She is living with my brother and SIL. I had her for almost 15 years and it nearly killed me.
Sadly, it wasn’t a pleasant goodbye and we no longer have contact. It’s hard but a relief as well. Long, complicated story...
OK, she was a terrible mother and there is no peace between DH and his mom. There won't be, either. It's very sad.
He will go see her and come home utterly despondent. The time to make things right between them is passed. She is living alone, for now, but one more fall and that's it--she'll be in a NH for the rest of her life. She's nearly 90, this should not be a surprise to anyone, but they all act shocked she's slid so quickly.
And I would be there as much as possible, but she has cut me out of the loop and told all who listen, she will not have "that woman" in her home.
There is NOTHING wrong with you for feeling tired and depressed about the upcoming days/weeks/months. A caring person would feel sad and conflicted. Just shows you have a heart.
Your mom has lived a long good life and you’re doing your best. My thoughts are she would not like for you to neglect your life and health. I decided I had to have balance and realize my dad is at the end of what was a good 96 years. He’s being cared for and that’s enough. He lived a carefree life at my age and I intend to enjoy my life too.
It goes into some details and the explanations are nice.
Now that your mom is on Hospice there is the ability to take advantage of a great Medicare benefit...Respite. Medicare will pay for Respite while on Hospice. So please ask the Nurse or Social Worker about that.
To your last question..statement. There is NOTHING wrong with you.
It is not wrong to wish..hope..the ordeal be over. I hesitate to use the word "suffering" I think with dementia because the memory is gone the person WITH dementia does not suffer as we think of it but it is the family, the loved ones that see this disease destroy the one we love that suffer. The one we love is but a shell. We are caring for the body. All I know is that my Husband would not have wanted to be as he was if he were aware, the last few years I think all he "knew" was that there was a person that cared for him, held his hand and was kind to him.
There are signs of EOL..(End of Life) and while coloration of the skin is a good indicator, particularly what is called a Kennedy Ulcer is an indicator. Eating, or I should say not eating or drinking is another. She will refuse food, close her mouth or turn her head. Offer but do not force her to eat. Offer fluids, I would guess she is on thickened fluids. Again offer but do not force.
It is comfort now that should be the goal.
Be kind to yourself.
You have done nothing wrong.
Your thoughts are not wrong.
As long as you can say honestly at the end of the day that you did the best you could that is all anyone could ask.
When momma's think, "God grief are you ever going to learn to sleep thru the night" what is wrong with them?
When parents say, "Will you ever stop making so much noise?" what is wrong with them?
We all get weary and want the problems to end. It is not the thought that matters. It is the actions that matter.
Thoughts mirror feelings. It is OK to feel all your feelings.
let the CNAs bathe her, that is when they also check the skin for breakdown. Blessings of peace to you soon.
Thank you for saying, "There is nothing wrong in wanting a good death for someone."
I appreciate it.
Ricky27
compassion, endurance etc. I am trusting that it’s necessary for my own growth as a human. It makes it easier if I can know this is somehow for my benefit too and when his time comes I know I will feel light as a feather but I’m sure I’ll also feel sad that he’s gone.
hang in there
kts mom
Try to get respite and rest up. We are always emotional when we are exhausted and you have been doing 24/7/365 for 11 years, wow, you are a strong woman and you need a break to finish the race.
May God give you strength and wisdom during this difficult time.
Interestingly, my Mom -- with advanced dementia -- refused medical treatment the last time she was in the hospital for what they thought was a bowel blockage. The doctor explained to us that it might require surgery if she didn't allow a tube to be forced down her throat. She said it herself -- "NO, let me die if that's what will happen." They did not force the tube or surgery. I suggested a laxative and that worked. She's still with us. You need to take a stronger stand on her behalf.
My mother is a very intelligent woman and one of her biggest sources of pride was earning a doctorate in 2 years when she was in her 40s. Also she is fiercely independent. This horrible, cruel disease is taking away the parts of her that she valued the most and I can only guess how much she is suffering to have to endure that happening. I, too, wish it would go faster for her so she doesn’t have to suffer for years or decades more. Also, the mother I have known my whole life is gone. We never had a great relationship (she was always toxic) but we were able to get along and love each other in our way. Now even that is gone. It kills me to see the shell of herself that she is now. I wish her the peace of death every day.
Aw, geez. What you've described is so burdensome.
I have tremendous empathy for you, and admire the way in which you're processing your ordeal.
I wish you well.
Ricky27
Nothing is "wrong" with you. You're decent, patient, giving and human.
The world is a better place because of people like you.
I wish you well.