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Madhouse Asked October 2019

I think my mother is dying. Any advice?

At the age of 94 a year ago my mother was diagnosed with lung cancer and because of her age she was not fit enough for a biopsy or chemo and just left to let it take its course and our home was like Piccadilly Circus with doctors nurses social workers and palliative carer and daily carers.


Now a year later we see no one. The consultant at the hospital has discharged her as nothing they can do.


If a dr is called it is phone appointment.


District nurses come once a month and we never see palliative carers.


She has a care company come in twice a day to wash her and get her up


This last week she has gone downhill rapidly.


She can hardly walk she goes to toilet twice a day had no bowel movement for four days she spends most of day and night sleeping hardly eating and when awake her voice is slurred like she is drunk and doesn’t know what day it is.


Two days ago the paramedics were called and she was crying they confirmed she had another chest infection (she was admitted four weeks ago with pneumonia) and called her dr who was reluctant to give her antibiotics.


I care for her all day and night even helping her to sit on the toilet and feel I have been left to cope alone by all the medical people but I now think it will only be a few weeks until she takes her last breath and I’m scared


I have cared for her for 12 years since my father passed and now I am sixty and feel guilty for feeling I have no life without her and I hate seeing her like this


I can’t leave her in case she falls as she is slowly becoming bedridden.


Has anyone any advice please?

Treeartist Oct 2019
Madhouse,

My thoughts and prayers are with you at this time. I’m glad you have reached out here and I hope you come back often. I am also glad you have called to get more assistance. You need the support.

As to your grandchildren....you know what they can take, but both you and your mother may benefit from seeing them. My father recently passed away, and I have some images that I would gladly remove from my memory, but one image I hope I never forget is seeing my 10 year old grandson walk into my father’s room the day before he died. My father awakened from an almost coma-like sleep at the sound of his great grandson’s voice, smiled, and reached out his hand to him. My grandson took his hand in his and laid his other hand on top of his head. I have never been so proud of him and his loving heart. By this point, my father looked very close to death, but my grandson was unafraid. His six year old sister came in to see him also.

LizO66 Oct 2019
Madhouse, I am so very sorry...this has got to be very frightening for you as there are so many changes ahead of you. There are so many people here to help you along every step - please keep reaching out.

Just as a thought - I was not allowed to see my grandmother to say goodbye to her. I know my mom did this out of care/worry for me, but I wish I had had the opportunity to hold her hand one last time, to tell her I loved her. If your grandkids are old enough, maybe ask them if they would like to spend a moment with her? But you know best - trust your instincts.

I am sending you deepest, most heartfelt prayers of love and peace.
NeedHelpWithMom Oct 2019
Liz,

Good point. My younger daughter was upset that I didn’t let her attend my dad’s wake and funeral. She was only 4 and I thought she was too young. She adored my dad. I did let her visit him in the hospital and I am so glad that I did. It was before he was in the very last stages though.

She was able to handle seeing my older brother in hospice but she was a teenager by then. Ironically, the older daughter wasn’t able to handle it and I did not make her feel guilty.

The little girl next door to us told her mom that she did not want to see her grandpa dying. She wanted to remember him when he was well. She said that she did not want seeing him dying as her last image. We are all different. Some just can’t handle it, others can.

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Swise02 Oct 2019
You are an amazing daughter. I just wanted you to know that! I wish I had words of wisdom for you as you have walked with your mother every step of the way. My heart is moved for you. It is scary watching someone approach death and it can be lonely. Just continue letting her know you are there by her side and do not feel guilty by any means. You have gone above and beyond and will be able to look back knowing you did what was right by her regardless of how hard it was at times. That is something to be proud of.

Isthisrealyreal Oct 2019
Great big warm hugs!

I am so sorry that you have been left to deal with this basically by yourself. I pray that palliative care will help you feel less overwhelmed.

Remember to take care of you during this difficult time. A hot shower and a healthy meal goes a long ways for your wellbeing.

(((((HUGS)))))

ArtistDaughter Oct 2019
I remember that nurses helped my grandmother with her bowel movements toward the end. She was really stopped up. The palliative carers should be able to do that for your mom. And they should be able to help you too when they finally get there.

Daughterof1930 Oct 2019
I’m sorry you’re going through this. Aside from the practical advice, which is always valuable, take moments to remember your mother as she was, to sit and hold her hand, to tell her everything you feel for her. You’ve been a wonderful caregiver, I wish you blessings and peace as you walk through this

BarbBrooklyn Oct 2019
(((((Hugs)))))).

gladimhere Oct 2019
In home hospice will not be 24/7 care. Medicare will pay for hospice services in home which means a CNA a few times a week to assist and bring meds, a social worker, and other services. Talk with hospice and the doc today. She can still die at home. Get the help for her that you need.

Does mom enjoy the children visiting? My MIL was on hospice and the children (ages 5-9) wanted to see her. It helps the kiddos learn about one of the difficult aspects of life, death. Only if the kids want to, though.
JoAnn29 Oct 2019
Poster is in England. Different health system.
Grandmaofeight Oct 2019
You need to find in home Hospice. They will come to you so she can die at home. Hugs to you and your Mom. Your Dr. Should be able to find some resources for you

Countrymouse Oct 2019
Madhouse, call the Macmillan helpline on 0808 808 00 00, or the Marie Curie Support helpline on 0800 090 2309. Depending on where you are, there should be hospice and/or palliative care teams near you and they should be able to get to you quickly.

If neither of these is any help, come back to us and we can try something else. I'm so sorry you're going through this alone.
gladimhere Oct 2019
Where are you madhouse?

CM, I think the word choices tipped you off. The word lounge? Instead of living room like is used on this side of the pond?
cwillie Oct 2019
Why aren't you getting any more palliative carers? If she is truly transitioning to end of life then there are things to be done to help keep her comfortable, pain medication at the very least and perhaps others - my mother was also on oxygen for her final days to ease her breathing. Please ask about this, and see if there is anyone who can sit with you and offer guidance.
Madhouse Oct 2019
Hi
i have just called district nurse who are calling palliative care and called her dr
now waiting for things to start moving and get the help I need in place
I can’t thankyou all enough for your advice you have all thrown me a lifeline
thank you all
i will keep you updated as to what happens next x
gladimhere Oct 2019
I am sorry you are going through this.

From what you say, mom should be on hospice. Is she? Care help sounds confused. Ask doc for referral, hospice will provide assistance with and for mom, and emotional support for you.
Madhouse Oct 2019
Thanks for the reply
mum has her wishes in place such as dnr and she wants to die at home
i have this week requested that my grandchildren don’t visit as I think it is unfair for them to see her like this
today we are going to attempt to move her bed into the lounge so she is not isolated and I will sleep next to her on the sofa so that I am with her at all times as I think she now needs care 24 hours
NeedHelpWithMom Oct 2019
There are no words to say at a time like this. All I can say is I am so sorry that you do not have any medical personnel with you at this time. I would feel abandoned too.

May God comfort you and your mom as your mother’s time on earth is nearing the end. Of course, it’s hard to say goodbye. You have cared for her for so long.

Please know that she will always live in your heart forever. Hugs!

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