Mum dying

[Beverley211163]

My mum has reached the end stages of PD. I have watched her gradually deteriorate in a care home and now she is passing away. Hasn't had anything to eat or drink for 5 days. I am in bits. I just can't cope, crying all the time, feel like it is just a dream and she will come back to how she was. Is there anything I can do to get her to drink anything to make her live a bit longer. I am not ready to let go yet and it is breaking my heart

[jeeves19]

It's tough but she might be ready to go and there's always the possibility (actually I think a probability) that this isn't the end and she'll go to a more peaceful, restorative place. I will pray for both you and your mother.

[jeffreyn]

Beverley,

It is entirely understandable that you are not ready to see your mum pass away.

If you really believe that it is in your mother's best interests for her to live a bit longer, then you must try to do what you can to help her to do that. I cannot help you, but perhaps someone else can suggest a way to help your mother to take in some fluids.

If you are at all religious, perhaps now is also a time to seek guidance from your minister/priest/...

Our hearts go out to you in this time of great distress.

Jeff

[redean]

I went through this with my mother who was 88 . She stopped being able to eat or drink without choking. It was very hard . I felt for her sake she wanted to be let go but I was very sad about letting her go. I hope you can figure out what Is the best for her and I don 't know what is good for you and her. Just telling you what I went through. Take care at this very difficult time.

[Beverley211163 in reply to redean]

Yes it is so so hard. Thank you for letting me know that you have been through it too. That's like my mum she can't eat or drink without coughing and we have been told to stop in case we choke her. She is just lying there now with her eyes closed and hardly open, she still feels me holding her hand as I ask her if she can squeeze my hand. I am falling apart it is horrible

[rhyspeace12 in reply to Beverley211163]

My husband went for several days not being able to eat or drink. He finally went to the emergency room and it turned out he had something caught in his esophagus. Once it was removed, he was fine He was found to have an ulceration in it that healed with Prisolic.(sp?)

[Hidden]

Echoes of my Mum in her last days. At the final trip to the emergency room, she spoke to her husband, "Let me go."

[Crusee]

Beverley.

Firstly my heart really goes out to you.24 years ago I was in the same position as you although my mum had cancer not PD but the situation you find yourself in now is what I went through then.

Fortunately,before it came to this stage we had talked about what she wanted.I found it very hard to cope with as we knew there was never going to be a recovery,and her wishes were to just let go.My first instinct was to do all I could to keep her with me.Then I realised that it was not what she wanted and thought again what was I putting her through and it was not in her best interests although I desperately didn't want to let go.

Like you I couldn't stop crying - I really don't know where all those tears came from and I don't think I slept or ate for a week.I lived at the hospital,they gave me a put up bed in her room.I was there for over 2 weeks.

I don't know whether you have both had the opportunity to have this sort of conversation .It wasn't easy and I put off having it countless times until one day I couldn't put it off any longer.If you have then you will know what she wants and you have to adhere to it. If you haven't done this then I am sure you know your mum well enough to know what she would want.Holding her hand,hearing your voice and just knowing you are there with her will give her a great sense of comfort.It will also help you in knowing you are there when it really matters.

Speak with the hospital gps.Is she suffering and will trying to get her to eat/ drink cause her further distress she does not need.?if you do manage to extend her life what will the quality of her life be?

As someone else has said if you are a religious person then seek guidance from a clergyman who may put things in the right perspective for you and pray for you and your mum.

What I have said to you was purely my personal experience but you need to decide whats the best thing to do here for your mum.

This is such a distressing time for you and I am thinking of you and your mum.

Take care

Crusee

XX

[Beverley211163 in reply to Crusee]

What a lovely message, it really brings everything home to me about how I am feeling. When she had her stroke 3 years ago we thought we had lost her then so we were blessed to have her another 3 years, albeit in a care home and she never walked again but she saw her grandchildren and also saw her first great grandchild, my daughter's little girl who is now 1. She was in the right frame of mind to enjoy all that, but gradually deteriorated. She has never had full quality of life since her stroke and with the parkinsons on top it has just got too much for her. Then she didn't like being fed through a tube when she was in hospital we always told her she must try and eat then or the tube wouldn't come out and she did make every effort to eat so they could take the tube away, so I know she wouldn't want that again. I sat and held her hand and cuddled her tonight, laying my head on her pillow and just told her everything I needed to say. My poor dad and brother are also devastated. My tears just wont stop either, it is amazing where they all come from. I am back home tonight but I feel someone is tearing my heart out. The care home said it would be dangerous to give her anything to drink as she could choke so we cant. She is so strong, just don't think she wants to let go. Everywhere I go, places I drive past in the car remind me of her. It is awful xx

[Bailey_Texas in reply to Beverley211163]

My mom passed 30 years ago. I was 32 and she was 66. Still miss her. She is still here in my heart as your mom will always be in yours. Please celebrate her life and reflect on the good old days. it will help bring you peace in the trying days ahead.

[Crusee in reply to Beverley211163]

Beverley.

I can't say anything to you that is going to change the way you feel.It is awful I know and I am so sorry I can't change that.You have spent some quality time with your mum when she needs you most and also it is important that you say the things to her that you want her to know.It is something your dad and brother need to do as well for their own peace of mind.It sounds like you already have managed to extend her life by a considerable time and given her some lovely times and memories but to try to do this any further may be unkind .I know you want to keep your mum with you for ever,I did exactly the same but there has to be a time when you have to say goodbye.It is so hard I know. Everyone thinks parents will be there forever.I lost my dad first and then my mum both within 5 months.In between that I lost a baby, I couldn't understand what was happening to me it was just so unreal.But this is a part of life and we can't change it,but you can make it better for you and the people you say goodbye to. Be there for them,let them know how much they are loved and appreciated and you too will gain peace of mind knowing that you have done your best for them.

I am so sorry for the distressing situation you and your family are in at the moment but there are people on this site who understand,and will listen to you and know what you are going through who will try to help.

You are in my thoughts and please take care.

Crusee

XXX

[Beckey]

Beverly, I begged the nurses to give my mom an antibiotic and fluids at the end to keep her alive, and they had to remind me that she was very specific in her health care directive: she did not want to be kept going past the point when she could keep herself alive. Honoring her wishes took a kind of selflessness that I had not known before.

In her last days and in her passing I realized the question is not whether we die but how we die. We'll all die of course, but how lucky we are if we die with integrity, knowing how loved we've been. The nurses told my sisters and I that even after a person quits responding they can still hear, so we talked to her, thanked her for different things, recalled various episodes in our lives that were particularly meaningful to us, said how grateful we were that she had been our mother.

I know you are suffering terribly Beverly but what you are giving your mother in just being there and holding her hand is a profound gift.

I found after my mother passed my sisters and I grew much closer. It's important to lean on others in your life for comfort and emotional sustenance. I'm glad you turned to the group here and I hope you will continue to do so. There is so much real caring in this group.

[hanifab23]

how long she had the PD please be strong

[jeffreyn]

Beverley,

You say that you know that your mother would not want to be fed via a tube again. You also say that the staff have told you that it would be dangerous to give her anything to drink. Others may know more, but I myself can't see any options left for you to try to help her to take in some fluids.

You also say that you don't think your mother wants to let go. Perhaps your main role now, with the help of others, is to help your mother to be as comfortable as possible in both body and mind.

You also say that you are not ready to let go yet. When my mum re-entered hospital, after being cared for in her own home for about 14 months by my wife and I, the decision was taken to not put her back onto a nasogastric tube. She passed away (in her sleep) after a few weeks. We were ready for her passing. However, I don't know what made us ready. Everyone is different.

My wife has just reminded me of something which may be of interest to you. Have you tried putting together a collection of your mother's most favourite music and playing it for her? There was an (Australian) ABC Catalyst program recently (approx. 29 minutes) which focused on the possible benefits of doing this in certain cases of dementia and certain cases of PD.

abc.net.au/catalyst/stories...

I would think that hearing her most favourite music is likely to be beneficial in and of itself.

Jeff

[Hidden]

Sending you support and empathy. When I walked this walk with my husband a year ago I learned to respect his wishes and walk along side him. If you can hold her hand and tell her you respect her wishes and to not hold on for you. It is difficult to do but ultimately brings you peace.

[Cbauer]

It is lovely to read all these caring replies. It reminds me and probably many of us to be sure to make it clear what I want done at the time when it will become so difficult for others to decide. I lost a dear friend to Parkinsons a few years ago. She had made her wishes so clear that we were more able to enjoy her last days remembering her life.

You are in my thoughts and heart. Best to you and all of your family.

[JohnPepper]

Hi Beverley. That is a very tall order. If a person choses to die, rather than fight, it is their choice. If, on the other hand she realised that there is real hope with Pd, if the patient were to take control of their own life and start doing smething to turn their lives around.

How old is your mum?

John

[DEAT]

Dear Beverley

It breaks my heart to read your post, understanding what you are going through.

I lost my mum and dad 7 mths apart in the same year both from illness. It was heartbreaking to watch them die.

Like you, in the last days we (five siblings) sat with our parents for days. I think the gift of being present is precious. As hard as it is, being able to hold their hand as they take their last breath is profound. Painful, heartbreaking but profound.

I pray the pwp who have replied to your post offer some comfort at a difficult time.

Peace and love to you and your family.

[MaggieMae1223]

Hi Beverly, My heart is aching for what u r going through with Your Mom 😥. Does your Mom have an Advanced Directive that she signed before reaching this time in her life? We live in the USA where we have this decision to make while we r still well and of sane mind. My husband suffers with PD and it is gaining on him rapidly 😪. He is 77 years old. So back a few months ago we sat down and discussed this document honestly with each other and we both decided to sign one. We r trying to make it easier for the family when our time comes to depart this world.. We do have faith and honestly, this is what has helped me get through some difficult days, I would not be without it, but that is what works for us.. I also want to share with u that my Mom died @ the age of 78 in a nursing home all alone. On the day she passed away not one family member had the blessing of being with her to hold her hand, or hug her to comfort her? My daughter was flying in to visit her Nana and we went to the airport to pick her up.. My sister was available if the home needed to call family. so long story short she NEVER RECEIVED A CALL, WHEN WE RETURNED BACK FROM AIRPORT, SHE HAD PASSED AWAY😪. The only reason I share this with u is so u can be there with your dear Mom when she passes. Sorry about this long post but I felt compelled to write this. May God Bless u and your family and give u the strength to do whatever comes your way. HUGS

[DianeF]

It is very hard to watch. My father, mother and most recently mother in law all quit eating and drinking at the end. I was a hospice director and saw many people pass,so I knew medically what was happening. It did not ease my grief when my own family went through it. I did realize it is a privilege to be there when Souls pass on. Your mum is blessed to have you by her side.

[Chris0846]

Beverley

I went through the same thing with my mother about 5 years ago. How lucky you are to be able to spend such valuable time with her. I was not so lucky as my mother lived in the Netherlands and my youngest sister had to keep us all informed as to when she believed death was coming, we, my 3 other sisters and myself managed to get to her bedside two weeks before she finally passed! They were the most bitter sweet two weeks of our lives! Mom was very lucid and quite amusing and amazing! She knew who we all were and was saddened that my two brothers could not come to say goodbye. We. Sang her favorite songs, we spoke about our childhood and anything and everything. There was much laughter and no crying in front of her, she forbade it! She also asked if she could pick out the music for her funeral

A TIme To Say Goodbye by Andre Bucelli and Sara Bateman!

When I read your post I immediately pulled up the song as I always do when I get emotional yet it brings me peace and comfort! Maybe if you listen to it you may get some peace as well!

yt

[Lu45]

There is no doubt that this is a very sad time for you but you will find the strength to cope. Eventually this pain will ease and the fond memories and love of your mother will always remain with you.