I hope everyone is staying strong out there! We are trying to maintain the power of positive thinking, but oh the challenges each day seems to bring .. can be overwhelming.
Momma is doing ok, she continues to struggle with swallowing, and has mucus build up, but lacks the strength to really be productive. We have scheduled a second swallow test. Thickeners are on standby, gosh I hate to have to introduce that stuff. I am having to help her most days now, with eating her meals; I have tried really hard to maintain her independence in this area, being this is one of the last things she’s been able to do on her own. But, safety first. I am always with her in meals, and have to watch her closely - she actually holds food/water in her mouth, and I have to remind her to swallow. I’m now having her swish water around, just so I know she’s clear. Soft foods have helped, but having to be careful. Oh how she loves watermelon, and it breaks my heart that she struggles with the water content.
Nutritious smoothies have been great, and we’ve been changing our meals at home to accommodate her challenges- it’s just so sad knowing what’s around the corner.
Mom is sleeping more and more. She’s had some Pretty vivid dreams, to the point she wakes up and thinks she can walk ... thankfully we’ve been able to intercept these moments and avoid falls... thank God for technology.
This picture is of Mom in her stand assist, sporting a new t-shirt that one of her sisters left on our porch in a beautiful gift bag for Mother’s Day. Perfect saying ... as most of you know this pictures is staged, and snapped within seconds of me being able to coach her to get both arms up and form two fists —- oh, and ask her to give me a big smile ... all at the same time.
Note: I take a lot of pictures and videos - most she knows nothing about (for documentation), and I am amazed as I look at images and videos from one year ago ... the progression is unbelievable.
We remain strong, not giving in unless we absolutely have to. I completely believe that working hard on finding the slivers of joy, as hard as it can be ... is important ... mental health plays a big part in our world.
We will keep pushing through as best we can!
You never know how strong you are, until being strong is the only choice you have.
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bazooka111
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Nice to see you back. I’ve noticed your absence and wondered about mom but good to know she’s doing as ok as possible despite the challenges. Glad you’ve got a swallow test scheduled, it does sound like there may be a problem brewing but at least you are getting prepared, which is half the battle.
Another lovely photo, your mom still lights up a room. Keep on as you are doing and keep finding those slivers of joy, very important. Remember though that other bit of important advice, take some time for yourself. I know that’s darned hard during lockdown but even if it’s the case that when mom sleeps you down tools and just relax - a bit of time to recharge your batteries.
Hey Hils! I hope you're doing good. We are hanging in there, or as best we can. I pray for longer plateaus with Mom's health. Coughing is incessant, so I called the Neuro office and went ahead and scheduled a swallow test, if for anything I could have some facts confirmed, and a plan to move forward with. With everything opening up here, it is a mixed bag -- Im not read to open, so I have resistance with family members; thats what I've been dealing with. Unhappy family members -- boggles my mind truly.
However, I have reinstated my "help" ... so we have a scheduled Tuesday / Friday deal with respite help for myself and hubby to get out and spend some time to recharge and connect. Thank you for that reminder -- your wisdom, I cherish, just so you know. xo
P.S. Last night, Mom went to sleep at 9:30 pm, and heard you in my head -- so I shut things down and went to bed at the same time! Talk about unprecedented ...
I remember when Jeff, my son, would hold food in his mouth. Looking back, I think he was afraid to swallow...that he was going to choke. I would coax him into swallowing, but with impatience. I wish I had been more patient. Lots of self-forgiveness required.
Yet, I don't remember him gagging or choking. I do think it was going down the wrong pipe....which led to aspiration pneumonia...a number of months later. He too had swallowing tests.
Hey there!!! I hope you are doing ok out there in LA. I completely believe Mom holds her food and liquid due to fear, and the anticipation that it will result in a episode of coughing, for sure. I will be right with her, and look over -- shes quiet and looks at me with a little itty bitty smile, clearly cheeks puffy still holding off in swallowing. I'll say, "Momma have you swallowed yet?" I'll just keep staring at her, as she slowly attempts the swallow --- I hate this, I absolutely hate this --- so, Im making the necessary adjustments. Trying as best I can.
Lovely photo - well worth the effort on staging it.
Before my husband went onto thickeners we found fizzy drinks helped ( though I know you are limiting Coca-Cola) the tingling on the tongue helps with the swallowing.
You mentioned smoothies - a great way of having naturally thickened fluids - your mom might like water melon smoothie?? I used to make mango lassi to replace eating mango too. Frappuccino in these summer months worked well for a while. Pineapple juice helped with the mucous secretions making it a little less sticky and easier to cough up . Short fat glasses and mugs worked better for my hubby than long narrow ones initially as he didn’t have to tip his head back but we mainly used straws in all different shapes and sizes depending on the drink - goes against general SALT advice but he always coughed less .
You are doing an amazing job, looking after your mom - that T-shirt says it all!! But even strong women need to look after themselves do take a little time for yourself .
Hey Tippy! I hope you are doing well. I realize that it takes energy for Mom to hold her arms up like that in the photo, but honestly, she needs the movement, so I view it as my contribution to her exercise of the muscles. (Actually, I do have her stand on this Lumex, and we do some exercises every day -- touching fingers above her head and such -- five repetitions is all about she can do without looking tired, but we try) SO ... yea, the effort in staging the photo worked -- she smiled when I showed her, and she automatically held her arms with a fist again. Made me smile.
I never considered "fizzy drinks" as an option! I will check this out -- Yea, due to diabetes I try to limit the sugar, but I can find other options -- crossing fingers that it may work as an additional option.
Just looked up a watermelon smoothie .. .we shall have one today! Pineapple! Frappuccino! Some great ideas! Now I just need some short fat glasses / mugs ... Thanks for the great ideas.
Thanks for the love ... few understand this insane journey, and so may heart is incredibly grateful for the friendships here. ((High Five for the great advice / suggestion))
This brought back memories. My husband loved Pepsi and was able to drink it until the end with a straw. He did better with that than thickened drinks. I also felt like my husband was afraid to swallow at times. Especially if he thought it would lead to coughing. He started refusing foods that he thought led to coughing, like chocolate (his favorite). Sometimes we would just have to have him spit the food out when he just couldn't swallow it. I also believe that part of swallowing is reflex and he had more luck with finger foods than having us feed him. I think that the act of bringing the food to his mouth would help trigger his swallow reflex. We eventually had to quit worrying about a balanced, healthy diet and feed him whatever he would and could eat. He absolutely refused pureed food!
I'm glad to hear that you are getting a little more opportunity for self-care now that things are slowly getting back somewhat normal.
You know what Pat, I think you are so right ---when we had our first swallow test, they cautioned us in using a straw, but I found it to be the exact opposite; a straw works for us. In addition, when Mom is able to pick up a piece of food and the act of bringing food to her mouth does help trigger swallowing I think -- I never thought of it that way!!
Another interesting love my mother has is BUTTERMILK! Something she grew up drinking ... Oh that is just gross to me -- I do not like it. She asks for it -- yuck. I have pulled back on dairy, because I worry that it contributes to mucus -- wonder if it does?
I don't think mom is going to take well to pureed foods either .... so, we shall see.
I agree on the buttermilk unless it's in pancakes or something! I think it might not contribute to mucus because of the acidity. We finally got to the point that if he enjoyed it he could have whatever because getting food in him became the most important thing.
SCOPODERM patches did wonders with with my late B’s mucus and consequently coughing issues.
Also pineapple juice (fresh NOT from concentrate) or pineapple fruit (puréed) proved really good, as it apparently contains enzymes that helps break mucus down. Of course all food and drinks were thickened to varying degrees as we went through the different phases of his swallowing capabilities.
You’re doing a heroic job caring for your Mom specially in this unprecedented time. Keep up the positive and loving attitude!
Hey Mx! I have to look into "SCOPODERM patches" ... this is new to me. Im on the pineapple juice suggestion --- I've heard of that, but it had slipped my mind. I had pneumonia two years in a row when I was traveling internationally for business, and my husband had made me a homemade concoction using pineapple juice, telling me about the enzymes -- completely forgot about this.
As you know its definitely not all sunshine and roses here -- pictures do NOT tell the real story, but these moments will be cherished .... I don't know what I would do without being able to capture these special moments. I just know I will never regret my precious photo file.
Hi Anne! I hope you are doing well --- I have activated the new baby rule -- last night, I went to bed when Mom did -- slept all night!!!!!! I cant believe it -- I feel so refreshed this morning.
Lovely smile and T-shirt Kim, well worth the staging and a great reminder for us all.
I'm sorry to hear about getting to the next stage with thickeners but being prepared does make it a little easier to handle. Thanks Tippy & Megabrew for the pineapple juice tip, I'd forgotten about that one.
I know what you mean about decline over a year. My daughter and I saw Mum in her home's garden yesterday taking essentials and we remembered that it was this half term last year she was able to walk along the seafront with a cane eating ice-cream with us. Now there's still no problem with eating ice-cream but she's using a walker and couldn't do that distance or crowds. No point dwelling but it was a nice memory of Sidmouth we all enjoyed.
Each week at our virtual Girl Guides meetings we end with positive messages one patrol has prepared. This one's for all of us:
Isn't that the best shirt! I love it! Mom's sister gifted this, and it could not be more perfect. I read it to Mom out loud, expanding my appreciation for her being my gladiator in life -- she set the example. Mom doesn't cry anymore, or at least it is quite rare ... but her expression of pride was evident. I think it is so important that we remind our loved ones how much they have done to impact or lives, be reminded that they have made a difference, and their life has mattered. I am incredibly blessed to have her as my Mom, and I tell her this all the time, in one way or another.
It's so hard to see the decline in Mom's health. Yesterday, we took a little ride through the metro parks, and it was a quiet ride -- I was thinking how we would just talk non-stop, laugh, share stories, have lunch, etc. She is so quiet. I miss her voice. I drive, hold her hand, and sing familiar songs on the radio--- she smiles, I smile ... I'll take what can get, and cherish the time.
She's right here, and I miss her.
xo
Kim
Great Smile & Shirt! Keep on snapping the photos, they are wonderful! Sending Hugs... Granni B
I always have camera in hand, and will continue to snap the moments ... I learned with losing my Dad 3 years ago now, that I wished I captured some of the little moments ....
I realize that some don't agree with the camera, pictures, or taking videos --- but its funny when they want to create something, they always call me and ask me if I have any pictures of this or that .... Hmmmmm .... I have a really funny photo idea that I used for my Mom's surprise birthday party a few years ago, I will have to post that for you to see.
You know Kim, some of my most precious memories of Rod are those captured on camera and video during his illness. I reach for them when I need a lift. Those moments remind me that however hard it got, we still had some good days and he did get to enjoy some really happy times. I cannot tell you how comforting it is to look at a video, see him laughing, hear his voice. I have a video where we took him bowling - I was worried that it would be too much for him but my married daughter insisted it was doable. We set up the ramp for him to push the ball down, he had to be helped with the push along with one of us steadying him to keep him upright, but his face and his hands punching the air when he got a strike will stay with me forever, all captured on film. We only managed that once with him but so glad we did. Keep that camera/video at the ready.
I love that story! Videos have brought me some tears of joy and sorrow for sure, and when I need to hear my Dad's voice again, I pull them out. I have recently found that to be the same with Mom ... her voice is so soft now Hils.
This past week, I put together a short video of my Mom and Dad dancing a final dance. Three years ago in November was Mom's 70th surprise birthday party, just three months prior to my Dad passing away, and I captured their last dance together -- cherished footage. At the time, I never realized that this would be their last dance, and certainly never could imagine she would be losing her ability to walk ....
Lovely photo. Sorry to hear that having some family problems. You have enough on your plate but people deal (or don't) with things in different ways. Hope you get it all resolved and can concentrate on Mum & hubby.
Feel for you with the meals. I found helping Mum with meals one of the most emotionally challenging parts of PSP. Sometimes she ate so little, it broke my heart. I actually found she ate better if a carer gave her, her meal - the uniform effect I think. So I did eventually have carers for all her meals other than weekends, which I still gave her so I still kept up with how she was coping and the carers were very good at letting me know what she had eaten.
I completely agree that you never know how strong you are until you have to be. I think you are amazing and you are caring so well for your mum. It’s lovely to get so many wonderful photos, I really treasure mine and Steve’s wedding photos ( we were married 2 months before he died, that had always been our planned wedding day before we had ever heard of PSP) I have a lot of the photos on canvas prints around my house and take great comfort from them because he looks so happy. Just take each day as it comes, progression does speed up and it is scary looking back on a year, I have photos of Steve and I out running together 7 months before he died. Your mum is doing great and I love seeing both of your smiling faces on here. Treasure each and every day together.
Oh Sarah ... I am so very sorry for your loss. I have read your post three times, trying to consume the reality that you were newlyweds. My goodness. I cannot even imagine --trying to wrap my brain/heart around your reality. As for capturing the moments with Momma, my heartaches to think that someday she will not be here with me -- for the rest of my life!! Its a heart shattering thought to me, and as much as I know that this is reality -- I struggle accepting this. SO photos / videos / special moments and making memories it shall be.
I appreciate you reaching out to me .. as I response, Im still trying to grasp that you were only married 2 months and running 7 months prior.
Thank you Kim for your kind words. It was simply horrific and when I look back it’s almost with disbelief but I try to stay positive and cherish my happy memories. I am seriously considering writing a book as it really was a shocking time and so much happened in such a short amount of time. This site is amazing though and without all you lovely people on here I don’t think I would have had the strength to cope with it all. Keep making those memories and share them with us.
Another great picture of your mom! You are such a wonderful daughter, doing an excellent job of caring for your mom. And the way you cherish the moments and days with her is just what you should be doing.
"You never know how strong you are until being strong is the only choice you have." The absolute truth! Keep on keeping on, doing what you do best. My heart is with you.
Thank you Joy (my most favorite word/name ever) ...
I appreciate your kind words, and as for caring for Mom .. I cant imagine it any other way. Its interesting timing, I just had a nice afternoon on the porch with my husband, talking about the years ahead. I will probably never forget what he just said to me, "Honey, what we have done to care for your Mom will be something "we" will never regret, and your love for her shows in how you care for her every single day" ... God blessed me with an amazing partner in life, I feel incredibly blessed to have him supporting all of this. We have sold our home, built a home, moved our lives around and inside out to make these years the best we possibly can for my sweet Momma ...
To watch her change has really impacted me these past few months --- I have found the joy every day -- but it seems I am more quiet these days, and trying to process all of this --- reminding myself that she is still with me, and for that I am thankful.
I am grateful for this forum, and the friends that totally "get it" on this PSP/CBD journey...
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No Question, just sadness and exhaustion 
