Each day brings on a new normal. This image captures a beautiful moment —- Mom is the grandmother of 11, and soon to be great-grandmother of her third baby — due within two weeks. I decided to take her to a the baby shower, and I am so glad I did. Moms emotions are expressed differently now, and I have to explain that her tears are happy tears … with COVID, it’s been a long time since she’s been able to see “groups” of her family together.
Swallowing has significantly diminished, and I am concerned, and at the same time aware that’s this is the ultimate ugliness of this disease. It’s as if Mom doesn’t know what to do with her tongue, or I have to remind her to chew. She’s holding food in her mouth and doesn’t or cannot swallow. Everything is based on her energy. She is not taking much in at all, and losing weight … yesterday, I crushed her meds (which isn’t much now) - Baclofen, Pramipexole, and Trazadone at night to help sleep —- 95% of the time these days is crushing to administer. Last night, before bed I crushed and put in applesauce — she held the applesauce in her mouth so long, that she started pushing it out and I’m wiping it off her chin — until she started falling asleep and I had to have her just spit it all back out —- all of it was still in there, so I know she didn’t get any med down. Sad.
She’s losing ALOT of weight.
So for those that have been here … is this what happens? She just stops eating? Swallowing just pretty much stops? It’s slowing down so dramatically .. I mean how do you survive like this?
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bazooka111
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That's such a beautiful pic. One to cherish. Same here with the swallow issues, it's her main issue now. She's battled all sorts but how do you maintain this ? Each week she loses more, heartbreaking 💔 Take care everyone, sending you all the love ❤
Hi, my wife is exactly as you describe with eating, although she does have rally days where she can eat reasonably well; get some meal replacement shakes or smoothies, the one my wife is on is made by Aymes aymes.com/products/aymes-shake but I am sure there there will be other brands. Each on contains approx 300 kcal.
Consider a peg for long term before she loses too much weight.
My husband had a PEG tube and it bought us some quality time. He was 66 when he got it. My only piece of advice about this option is to keep in mind that there will one day be a time where even this method of feeding will no longer be tolerated or the best thing for your loved one because drawing out life as long as possible--regardless of the quality of that life -- isn't always the most compassionate thing to do. And, unless your loved one can still communicate, or has communicated their desires clearly and without a doubt, it will be up to you to decide when to greatly reduce or stop those enteral nutrition feedings, and that responsibility carries a very heavy load with it.
What a beautiful picture and I am so pleased for you and your family that she is getting to share such special times. We lost my Mum a year ago and we have a new baby girl due in the family this Autumn. My mum would have been over the moon to meet her. Regarding your question over food, this is exactly what happened to my Mum. She ate so little during the final stages, she became very thin and frail. She sipped meal replacement drinks and had thickened replacement yogurt. Very occasionally she would eat something like weetabix. It is so sad and difficult to see, I am sending you heartfelt love and support from across the pond. Denise xx
What a lovely picture! So sorry to hear that your Mum has reach this dreaded state. It must be the worst part of this awful illness. My husband has recently started coughing/ chocking quite regularly on drinks mainly so I think he is getting towards this stage and I am quite anxious about it but being part of this group I have gathered a lot of informations so I am ready to support him as best as I can.Take care and thank you all for being there.
Hi Kim, such a lovely moment captured in the photo and great that you were able to bring your mum along. I’m sure she enjoyed every moment being with the family.
Sorry to hear about the swallowing declining so much. Just keep encouraging her as I’m sure you do already and also take care of yourself too.
Tough times Kim. I am afraid you know the answers to your last questions. Keep doing everything that you are, remembering to tell your Mum that you love her. Get plenty of rest and most of all, try just being her daughter, when you can. That’s all she really wants and needs.Sending big hug and much love
Heady's right, Kim. You know what is in front. You have done so well to keep your lovely mum safe for so long, knowing she is so fragile. She looks so smart and neat in your photo! Those lovely nails!!Stay staunch and keep her safe for as long as you are able! Keep telling mum you love her.
Thank you for the beautiful picture of love and caring!! I noticed your mom’s nails too. Very fancy!! Thank you for the great description of your mom’s swallowing. It does seem that actions that are reflex or unconscious now need to be intentional. How do we help to keep those important actions of breathing and swallowing intentional? A big hug from me to you and your mom! All the best. Linda
What a delightful picture! So lovely to see! My mum started getting worse just after my dad passed away nearly three years ago. She was diagnosed in August and my dad passed away suddenly in September which was a huge loss. That's when I noticed her swallowing slowly getting worse. I have noticed when she is more fatigued that's when her swallowing gets harder for her. It now takes her a hour to eat a tiny bit of food which everything now is blended. She has also lost a huge amount of weight. I try to get all her eating done by 6pm. She has some cheeky chocolate buttons an hour before bed. I just have to be extremely patient with her while eating and drinking. She still sometimes chokes but I try to calm her down before continuing to let her clear her throat I find when she panics she gets worse in choking. I also have to prompt her to swallow things down but not to rush because she only knows when it's right to swallow to avoid choking. Also distractions are not good. My mum is now on a supplement with a high calorie content it's called nutricrem the consistency is just right for mum to swallow. It's like a dessert. You are doing wonderful in what you are already doing. Don't be sad. I hope some of these things that I manage with my mum helps you a bit. Lots of hugs to you both. And take care of yourself too. 🌷
Kim you are doing so well keeping your Mum not just well but still a major part of the family. What a lovely occasion to have taken her to, so lovely.
We found that sometimes stroking the throat helped the swallow but in the end there is nothing to be done. Try not to dwell on what is to come but also make sure you have things in place to make the end easier not just for your Mum but yourself.
I don't know how it works in the US but due to our lovely Community Matron we were able to have end of life drugs prescribed several weeks before they were needed, which meant no running round pharmacies trying to get them, when you just want to be with your Mum. We also had the GP round a few days before which meant that we were able to have a nurse verify the death and not have to wait for a doctor, which could take many hours. And the undertaker was also contacted before hand so they were prepared. All horrible things to have to face but did make a big difference to those last few precious hours and the immediate time after.
Stay strong and give your lovely Mum a hug from me xxx
It’s a difficult truth you are facing Kim but be consoled by the fact that you have made the last few years the very best they could be for your dear mom. I had everything in place for end of life meds and when I sensed that Ben was losing the PSP battle I was able to call the district nurse to fit his driver as I was so anxious that he might be in pain due to his contorted body. We had the conversation early after his diagnosis of his end of life wishes, he didn’t want his life prolonged by having a PEG fitted. It’s a very personal choice but I was grateful that I was able to act on his wishes and he died very peacefully. We are all going to die at some point and your Mom is a very lucky lady to have such a caring daughter to help her to have the best life she could have until the inevitable end of life. Sending love Kate. xx
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