PSP Association

Difficult decision day today

My lovely Mother who was diagnosed in January 2013 with CBD is no longer mobile and communication very difficult. Her feeding is now spoon fed and she is choking on pureed food. We have agreed to PEG feeding until her life becomes not worth living anymore. I am trying to remain strong but it is heartbreaking. I am only posting to see if others are in the same position?

44 Replies
oldestnewest

We have same issues here other then choking. Dad will some times cough while drinking. I can't hardly understand him and he is being resistant to a communication board. He hasn't walked in over a year and now all moves are by hoyer lift. He has maybe 60% use of left arm/hand and none on right side. We spoon feed him all foods, everything is small pieces.

Ron

1 like
Reply

Ron

He needs thickners in his drinks. Usually the problem starts with drinking rather than eating. My husband hated the thickner so I gave him Smoothies but he really missed his cup of tea.

Marie x

3 likes
Reply

Can u sneak just a little thicjener in the tea even a small amount will help

Reply

💛🙏

Reply

In same position.

Can you tell me the quality of life you feel your mother has and how you assess it ?

love, Jean xx

4 likes
Reply

Hi Jean Its very difficult to tell isn't it? I think when my beloved Mother is bed bound and cannot eat, communicate or urinate or anything else then you think surely that brings you unwillingly to life's end yet you don't wont to let go?

2 likes
Reply

Exactly where we are.

Chris can eat pureed food but otherwise as you describe.

Its tough.

He has decided no peg.

love, Jean x

1 like
Reply

Hi Jean its such a tough call isn't it. Its also a very personal decision and I don't think there is a right or wrong way round it. Sending my best wishes to you and Chris Mx

1 like
Reply

💛🙏

Reply

Life is sweet... it's amazing how people hang on. 💛🙏

Reply

Life is sweet often even through the very difficult distressing times .

We have been in this position for a number of Years !

I have asked over and over for the peg but it's been refused it's my opinion that they have been wrong. I amdamiliar with the peg because my mumhad it after a stroke with no problem whatsoever ,.

It is a matter of your own choice

Reply

Dear Martina my lovely mom is in the same situation while shes only 65:( we r not only heart broken and still shocked but also we have carer whom are cruel and teaseful :( we dont know how we pass days and nights

The only thing that im sure about her is she still has feeling ,feeling of love and kindness

1 like
Reply

Hi Kathrin87. It sounds like you are having a very difficult time. I was shocked to hear of your uncaring 'carers.' If they are from an agency, you must put in a complaint. Life is difficult enough without having to deal with that as well. Do you have a Government department in Iran that deals with social srrvices? Maybe they could help. Take care of yourself and stay strong.

Margaret

2 likes
Reply

Thank your for your reassuring unfortunately there is no proper system for such an important issue here,i have to take care of mom and managing the situation most of the time,thats terrible u cant imagine they were beating her,abusing her,teasing her,they are not educated at all they have no idea about hygien and the agents ate scammers.it took me a year so i can take mom back into normal since she was so panic and scared:(

We had to hire 2housekeepers to lift mom up takeing her to bathroom and so on

Lately my father found a company providing patient lifter device ,would be really helpful

Hope we can solve part of our issue this way,

2 likes
Reply

💛🙏

Reply

I was in the same position. My husband was fitted with a PEG in January 2016 and in October he decided he didn't want to live anymore by pulling at the tube and me realising he wanted to tell me something. I asked if he had had enough and wanted to go and he put his thumb up. I called the GP who asked him the same and told him he would die without food and water. All food and water were withheld and I just moistened his mouth with a fine spray to the inside of his cheeks. Two weeks before we were still going on regular outings which he signalled he wanted to do so at that point thought must have thought life was worth living. The PEG brought his weight up, cleared a pressure sore and he never had any infections so died very peacefully with no pain and not on any medication. I hope your mother has some means of communicating her wishes as it was so much easier for me not having to make that difficult decision to stop feeding.

Best wishes

XxxX

5 likes
Reply

Thanks NannaB for your reply. We have another meeting next week with dietician to discuss what happens when my Mum reaches the point of not wanting to carry on. I will bear in mind how you dealt with it. This really is truly awful.

1 like
Reply

Dear NannaB, 💛🙏 Althea

Reply

My hubby is bed bound cannot do anything for himself and cannot communicate so totally reliant on me and carers. when he was able he made decision do not resuscitate and no peg also not to go back into hospital. Frustration, sadness and a feeling of hopelessness becomes the norm. Jx

1 like
Reply

We're at same stage as you I think. I'm grateful for the carers coming in but hate seeing him like this. I just feel in limbo. Think I will follow Heady's example and buy in pureed meals. I can't think straight.

Jean xx

Reply

Hi Jean yes that's what we do buy in pureed foods. Hope you have a good day Jean. Mx

Reply

Hi Martina 12. Do you mind me asking where you buy the pureed from? Sounds like a good solution. We are not quite at that stage but I feel we will be there in the not-too-distant future.

Margaret

Reply

Hi Margaret we use Wiltshire Farm Foods they home deliver.

1 like
Reply

Hi, I bought Puree meals from Wiltshire Farm Foods. I am presuming that you live in England! They were perfectly acceptable, delivered to the door, would even work off repeat orders if needs be, so once you set everything up, didn't need to worry again. You can do it all on-line.

Lots of love

Anne

1 like
Reply

Wish we had a Wiltshire Farm in South Africa 💛🙏

Reply

Maybe puréed food would help will give it a try. Yesterday hubby refused to eat and that is something that is really worrying. Really feel unsettled with everything. Jx

1 like
Reply

💛🙏 my thoughts are with you

Reply

So sorry to hear about your mother . Praying for you all. God bless

1 like
Reply

Hi martina. My hubby had peg fitted in feb this year and so far its going ok. No obvious weight loss and dietician/nutritionist is always at the end of the phone. Ger cañnot speak as such. Uses thumb a lot for answers to specific questions. He is hoisted everyplace but is not bed ridden yet. Thank god. We are waiting for a ceiling hoist to be fitted soon ish. His mouth is nearly shut so not even comfort thickened cuppa or water with straw after last chest infection. Sad but i think his will to live is still strong because although his intelligent brain and memory are still there he doesnt seem to appreciate the enormity of caring for him because he still mumbles about holidays and can't understand why i can't take him anymore. I feel so guilty but i just can't do it.

Good luck with your mother's care. God bless. Marie

Reply

Thanks Marie its good to know that your husband is doing ok with the peg feeding. It sounds like we are in a similar stage with my lovely Mother. We are getting to the point of needing a hoist as well. I think my Mum still has the will to live which is good. Keep in touch with me please and let me know how the hoist works out? Mx

Reply

Marie I know what you mean about feeling guilty. If it wasn't because of taking him away it would be something else. We beat ourselves up over everything. It's especially hard when others seem to be able to do things you want to? Marie you have been a rock! Really you have. It is heartbreaking for you that you can't take Ger away too but sadly he doesn't realise it. Part of the condition it appears is to be think your other half of is super human!

Sadly you know the truth and there really is nothing you can do.

Marie x (the other one)

1 like
Reply

Its terrible this week. Twice he managed to ask me if we were going home (ireland) soon. The second time i had to spell out the reason and he said, but why. Thats why i dont think he understands the enomity of his illness. Plus my sister in law told me 2 nights ago that gerry's brother's prostate cancer has now moved to his brain and they will care for him at home in south london until the end. I've chosen, rightly or wrongly, not to tell ger about this until jim actually dies, which unexpectly will be before ger. I think hes depressed enough at the moment if hes always thinking of going away, and baddie me won't take him. So sad.

How are you at the moment marie. I hope you've managed to lift your sprits a bit and the problem with your daughter has improved slightly. I have to say mine with my son hasn't. Sod it.

Take care. Marie

1 like
Reply

Marie none of this is your fault or Ger's either. Poor man just can't understand this? It is so very hard for you to have to keep answering why he can't go to Ireland on top of everything else. Just count to 10 and smile and change the subject. I am sorry that his brother is also dying. What sadness you are having to deal with? I don't know if I would tell Ger when his brother dies. What is the point? What can he do?

One of these days we are going to meet. Hang on to that thought? You are amazing, even if like all the amazing people on here you don't think you are!

Lots of love and hugs to you.

The other Marie x

1 like
Reply

Thanks marie. And i will hang on to that thought. X

Reply

Bless you Marie. 💛🙏

Reply

Okey dokey martina. We already have a standing hoist which is brill.

Reply

Yes we have a ambulator for transfers is that the same as a standing hoist?

Reply

Not sure martina. Ours works with a battery to raise ger up and down and between rooms. By the way have you been to see your local hospice for a chat. They organised our CHC for us.

Reply

That sounds really good Marie and different to the ambulator which is a harness on a turntable stand. I think I will ask the OT about the standing hoist. We went through the CHC process back in April, got through the Checklist fine but got turned down after the second stage. I am considering appealing but at the moment we have NHS carers going in daily which has been set up by our social worker as social services can't get the staff required for Mum's large care package! We have been told that they won't let Mum go until social services can sort this out and its been going on for at least 2 months! I think when Mum has a peg fitted it would be additional evidence for CHC so hoping then we will try again, or Hospice to fast track it for us. Thanks Marie for your advice I really appreciate it Mx

Reply

Do go to hospice and especially if your mum has peg fitted because that would be a health care issue and also the care of the peg site itself is a health issue. Its such a b....y nightmare it does your head in. X

Reply

Its a really difficult decision Martina12 but you are undoubtedly making the right one. My mum has had CBD for 7 years and is now completely non-communicative and largely bed-ridden. On the odd good day, the nursing home do get her up and into her wheelchair so she can at least get a change of scenery. Mum had a peg fitted just over 2 months ago. Having the peg fitted might be able to give your mum back some pleasure in food as she won't rely on oral feeding for nutrition & fluids, but instead you can just feed her very small quantities of all the things she loves! Unfortunately my mum had gone too far for this to be the case with her, but don't loose sight of the fact that the peg can be a good thing too!

Reply

We are not at this stage yet. So I can't give advice. Wishing you strength at this heartbreaking time. 💛🙏 Althea

Reply

Thanks Althea it is a very difficult time x

Reply

Update..yesterday my lovely Mother choked on her liquid antibiotics so we had to call an ambulance. Fortunately she is ok again but it really shook us all up. We are using a thickener now for all fluids. I phoned the Hospice and they are coming out to see us next week to update the palliative care plan. I think for us to go ahead with the peg feeding is the right decision but I do understand those who have decided not to go ahead with it. There no right or wrong way round this.

Sending my best wishes to all

Mx

Reply

You may also like...