Since my last post things have deteriorated quickly, mums swallowing has got a lot worse and she has choked twice and has crackles on her lungs which she has been given antibiotics for ( not quite sure how they will get these into her) the community matron updated me today and has told me that she is arranging for the home to have “anticipatory meds” incase they are needed😞
I’ve sat with mum all afternoon and managed to get 2 teaspoons of thickened liquid into her without it coming back out.
I feel so guilty as her eyes look so scared, she looks so weak and half the woman she was.
I just feel like she is starving to death, a PEG wasn’t an option she has always declined any intervention and it wouldn’t make any difference to the quality of her life she would still be bed bound, incontinent, not able to communicate or eat. Food was the only pleasure she had left and now that too is being taken
I asked about hospice involvement and palliative care but the hospice don’t have the staff for visits to care homes is what I’ve been told
The staff are doing all they can, they are moving her to an airflow mattress this afternoon as her bottom is becoming sore.
Where do I go from here 😢
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Walking18
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Hold her hand, smile and tell her you love her. My husband is in hospital currently very weak and poorly and we thought it was the end too at the weekend but he has rallied a little and eaten some food even though it’s just jelly and ice cream. Im sitting quietly and calmly holding his hand, stroking his arm, telling him I love him and just being close to him. I don’t feel there is anything else I can do or the medical staff can to do other than ensure the staff are monitoring any pain and giving medication for pain. My husband has said no to a peg too so I accept his fate is linked to if he choose or can eat and drink now x I’m obviously internally terrified but I’m outwardly calm and accepting ..or trying to be x. I’m really really sorry you and your mum are in this position. It’s all heartbreakingly sad
Thank you for your kind reply - each time I’m with mum I cleanse and moisturise her face, massage her hands with hand cream and curl her hair to try and make her feel better. Any sort of pamper treatment really. I put her favourite shows on tv or her favourite music on. I talk though family photographs and she does hold them and stare. It’s all I can do but never feels enough she always grabs my hand and grips it tightly when I’m sat with her which makes me think she’s scared. The wailing noise she use to do has now stopped not sure if that’s because she isn’t able to or doesn’t have the energy to.
I just don’t want her to feel scared by what’s ahead but her eyes tell a story and at the moment I feel she’s terrified 😞 I am a nurse so have dealt with ems of life in my career, lost my dad to cancer 3 years ago and my father in law in August of this year but this feels different, they were both peaceful and slipped away but this feels like mum is locked in and scared.
I guess we all feel the same, the SALT who mum is under won’t let her have jelly and ice cream as she said it’s the wrong consistency and it would pose more of a choking risk - I have asked the home about using a bubble machine which can be used with most drinks that gives the flavour of the drink without having to swallow - have you heard of that
Sending you positive thoughts. At my husband's bedside, I would comb his hair, put lip balm on his lips, kiss his forehead, hold his hand and tell him I loved him. I wish you peace and comfort through this journey.
Thank you for your kind reply - each time I’m with mum I cleanse and moisturise her face, massage her hands with hand cream and curl her hair to try and make her feel better. Any sort of pamper treatment really. I put her favourite shows on tv or her favourite music on. I talk though family photographs and she does hold them and stare.
The activity coordinators at the nursing home also do little pamper sessions with her when I’m at work
I think you are amazing. I know she appreciates all the sweet things you do for her. You just shared such wonderful acts of kindness with everyone here. You are an inspiration on how to show love and kindness to your mum. Sending you and your mum my blessings.
she sounds exactly like my Nana. All we can do is just be there. Keep doing what you’re doing. Just know there is a whole community there for you too 💛
Thinking of you, must be so difficult working as well. We are not at this stage but dreading it, have always been terrified of people choking. Being with her, touching her, talking with her, all sounds good.
Just be there for her, you're doing the right things.
The community nurses will be there for her with the 'anticipatory' meds they are providing. These will be administered by a 'driver' probably into her thigh. It is painless and you will find her scared look will go. Have you mentioned this to them? If not please do as they came around immediately when it happened to us.
Your Mum will be made comfortable, play her favourite music in the background, and she will rest quietly.
I really feel for you and your mum. I know how these moments between you and your mum, are your way of letting her know you're there and you love her. She will feel that. I do the same for my dad, except curling his hair🙂 I can only imagine how your mum is feeling, I see it in my dad, who is not far behind your mum. Talking helps, acknowledge her possible fear with her. Remind her she has loved ones who are waiting to see her. Tell her your fears too as well as any hopes you have for the future, it's something you'll have in common, both the good and bad. It's odd, the only sense of peace I get is being with my dad these days, I love being with him, it's good for me, as well as him. Keep going, wishing you calm and peace at this time.
Im so sorry for what you and your mum are going through. I lost my husband 3 weeks ago and it sounds to me like your mum needs anticipatory drugs NOW. Are you definitely sure hospice can't come to you? My husband was on hospice for 6 weeks and they were truely a godsend. He got his wish to "go to sleep and never wake up" and that was due to the drugs that controlled his pain and calmed him. He was confined to a hospital bed, had a catheter and could no longer swallow and barely could talk. I miss him so much but the only thing that makes life without him bearable is knowing that he's free from living in a trapped body.
It's agony to watch a loved one suffer and my thoughts are with you along with hope that you get the help you need to ease her suffering.
Sending a big hug to you and your mum. Tough times but you will find the strength to get through it and be there for your mum. I get great comfort from knowing mum loves me and that she knows I love her. All the things you are doing show that. Xxx
Your mom's journey through this sounds very similar to my mother's. My mom passed away a year ago, but I remember the stare in her eyes very well. I do believe that the locked look in their eyes has to do with the disease and the inability to frequently blink more than a freight. Nevertheless, I would remind my mom that her lord did not forsaken her (she was quite religious) and that she was brave and I had so much admiration for all that she had endured.
One thing that our hospice team ordered in addition to the "anticipatory meds" was oxygen to help assist with labored breathing if neeeded. My mom used it a couple days during the week before she passed.
You have done a great job and your mom has a wonderful daughter!
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A newcomer - Mum with PSP
Mum's progression of PSP
Going to miss you mum
Me again... progression with mum
