is there anything more i can do

[tammylynnbest]

Hi im new on here but mom has psp and my dad and i are her main caregivers just this last weekend she quit eating solids she said she cant swallow it no more she is gonna refuse the feeding tube she said she is ready to die is there anything that we mightt be able to give her to make her more comfortable this last year she has really went downhill i just wish i could do something to make her life easier i feel so bad for her i feel helpless now i would make her anything she wanted to eat but she says no she doesnt want nothing she is still drinking her breakfast drinks.

[plieepal]

Hi, so sorry to hear all that is going on. Just wondering, when you say your mom is refusing solid, is puréed diet still an option, or soft food, for example ground meat with enough liquid soaked into it.

Asking this because my mother is in that similar state, any solid food, even poached fish is no longer an option for her, but I still give her ground meat with enough water and eggs added, then steam it. Make sure you add enough spice so it would still taste like food she usually likes. If swallowing is mainly the reason she doesn’t want to eat, know that chewing could be so tiring for them as well to the point they give up on eating.

My mom doesn’t have that control of her tongue so not just chewing is a problem, but also getting the food pieces to the place she can start swallowing is hard, sometimes she involuntarily spit out food because her tongue is not coordinating.

It’s sort of a guessing game, as caregivers we are always looking for root causes then alternatives to help. Wishing you all the best.

[Martina_MP]

A hospice service should be able to help and make sure she is comfortable, and give you and your dad support. They can get set up really quickly. You can call them directly or get a referral from your mother’s primary care provider.

(Added) You can have hospice support while you continue to try food alternatives. If she can still manage breakfast drinks then there are still lots of options. Is she spoon-fed? Try smaller amounts of things like applesauce.

[AJK2001]

I do feel for you. I found it so hard when Mum refused food.Has your Mum been assessed by a Speech & Language Therapist to see at what stage her swallow is? There are thickened nutrional drinks available which are energy & protein dense. I don't know what country you are in but in the UK there are companies that provide pureed ready meals, some of which are more protein & energy dense.

You should also reach out to your GP / Community nurse and get your Mum assessed. Though it is a really hard & tough thing to do, if you can document your Mum's wishes regarding the final part of her life, it makes the end much easier for everyone as you have the comfort that you are helping her as she wished. My Mum too refused a PEG, which I totally got. She also stated she didn't want to go into hospital unless for something like stitching up a split head. So when she stopped drinking, we knew she didn't want to go into hospital and be put on a drip but preferred to stay at home & be looked after by the carers she knew & liked and supported by our Community Matron, she was able to die peacefully with dignity with my husband & I with her and I got great comfort from knowing that was what she wished. xxx

[LaurenSim]

Hi Tammy.

All we can do is just show up. Be there. Be Brave.

I’m in a similar situation with Dad & I trying to keep my mom at home by caring for her ourselves since 2018. She’s late stage & I don’t know how we can keep her comfortable much longer. She’s so frail. Sleeping more. Eating less. Can’t communicate beyond yes and no now.

It’s so overwhelming. But it’s not about me. It’s about giving my mother a death as dignified as the life she lived.

Take care.

[Inarticulate]

Hi Tammy

I wish I could have an answer for this too as I find that Dad has made similar requests on his RESPECT form and I’m dreading us getting to that part where food is so challenging, he’ll simply ask to stop.

Sometimes the hardest thing we do is follow their wishes, and the most loving thing we do is not intervene. It’s the worst aspect of being a carer.

Hugs x

[AliBee1]

Hi. I am sorry to note that you have had to join this site because of your Mum. It is such hard work being a carer for someone with this condition but you will receive answers from all over the world to help you and that is so special. You have already had some excellent answers. My husband did not want a Peg tube and eventually went from soft mashed to pureed and then thickened liquids only. The latter can be prescribed by your doctor but you can liquidise most things and they are still very tasty, so experiment with tastes that your Mum likes and see how it goes. I was also advised by Speech and Language to have things like full cream in the fridge and my husband loved creamy custard and stewed fruit liquidised with cream. The other thing is not to stay to set food times, just give when wanted and food times can be come enjoyable again. I hope that this will help and make your Mum happy. Good luck and big hug. AliBee xx

[Beads0122]

Tammy,The title of your post caught me eye, because that was the same question that I kept asking when I was caring for my wife with the cruel disease, “ Is there anything more I can do?”. While I know you are asking for practical help and I know you will get if from others here on this forum, my advice is more emotional and mental. Just by asking the question, you are doing all you can do. Don’t let the side effect of this disease, the emotional and mental stresses and strains of being a caregiver, get you down. Do all you can, but take every opportunity to savor the time you have with your beloved mom as show her how much you love her. This stressful time will end and will leave the void of our loved ones.

Prayers of strength, wisdom, and comfort,

Bobby

[HARRADL]

Wondering similar to others if she would take in something soft. I give my mom flavoured yogurt, tapioca, puddings, icecream, Ensure meal replacement really cold, smoothies packed with nutrients, soft macaroni. For her texture is key i.e. no ground meat anymore etc. I've even tried some baby foods.

Keep us posted. All the best!

[doglington]

Such helpful replies. I well remember feeling the same. My husband died 3 years ago now. We'd had the conversation and were in agreement about quality of life being the most important. I was lucky in being able to nurse him at home with the help of the excellent palliative care team.

Now I think the most important advice I took from my friends here was - give them just what they enjoy to eat. Most important tell them how much you love them and that you will be alright.

I now wish I had massaged his limbs and talked to him more. But I remember that I was exhausted and he slept a lot.

Its such a difficult time and my heart goes out to you. Love Jean

[Rembass]

My mom passed away in February this year of PSP and her progression was similar. By all means if you have not yet engage hospice, you should consider that option. Hospice of the Chesapeake here in MD were a big help during the last stages of her disease. She wanted to remain at home and did not want a feeding tube, so we were very reliant upon visits from the hospice nurses and aids. They can help keep your mom comfortable and provide some much needed relief for you and your dad as caregivers.

We relied heavily on Mom's breakfast drinks, as the thicker texture made it easier for her to swallow. She finally one day refused and said to us "I'm sick of Boost" and I think that was her way of telling us she was ready to go, as she passed about five days later. Just do your best to take care of her and yourselves.

[Baytalon]

I'm not sure I can add anything more to what has already been said. I made milk shakes made with Boost and added protein powder to it. Eventually, my husband didn't even want that. Mashed potatoes and gravy laced with protein powder was the last to go. It is heartbreaking, but I did my best to honor his wishes , and he passed peacefully at home with the assistance of our hospice team.