So it’s been a tough few days ... and I am typically all about staying positive, but we are all human, right? Mom has a “glazed” look the last few days ... it makes my heart drop ... God, can I do this?? I would do anything to stop this ...
Trying to find the joy...: So it’s been a... - PSP Association
Trying to find the joy...
Written by
bazooka111
To view profiles and participate in discussions please or .
47 Replies
•
Sending you a big hug, stay strong, you have been doing an amazing job of looking after your mum, my heart bleeds for you, brings back so many memories. Yvonne xxxx
Hi love. You will be able to do it even it is so terribly hard. Your faith will help you find the strength needed but it is so good that you can admit that you are human and that you cannot always manage on your own. Remember 'Footprints'. Give your Mum a big hug and get one of your wonderful family to give you one for yourself. Very important. God bless and big big hug AliBee xx
AliBee I believe He is carrying me this morning ... I lay here next to her, as she sleeps quietly ... reminded that we have a battle and have prayed that He renews my strength as the eagle ....
Isaiah 40:31
But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Good. keep strong love xx
There are good days and bad days for the person with PSP and for the person who is the care giver. They happen. They can feel overwhelming. Deep breath. You can do it.
SewBears• in reply to
It’s nice to be reminded to breathe. It’s the little things that can make a huge difference. Sometimes when I can’t sleep I tell myself to relax my forehead. It’s amazing how my teeth unclench when I put my mind in relax mode. Thanks for the reminder.
A great way to relax your forehead, I have found, is to blow out through your mouth like you are making a wish on a dandylion😊
I tried blowing out dandelions and I nearly hyperventilated. It’s approaching midnight and I’m wide awake. At least my teeth aren’t clenched and the field of dandelions have seeded a whole new meadow. I will keep working on this exercise and perhaps I will get better at it.
❤️
😂 - love your descriptive post, SewBears, tickled me pink. Always a place for a bit of humour despite the seriousness of it all. Love Hils.xx
Laughter - that’s what I’m missing - I love you guys!!
I’m sorry that you’re struggling. It’s days like you’re describing when I just want to runaway. You can do what you do better than anybody. Your mom is in there, behind the glaze. Hopefully her beautiful smile will appear and you will capture another lovely photo.
Keep on keeping on.
Sending hugs from I SewBears
Xoxo
I am determined to keep my head above water here - it’s been a hard few days, but the sunshine on my face this morning is renewing my strength! Moving forward — oh, but it’s hard. 💛💛🙏🏻
You can do it Kim.
Think of yourself as your moms joy.
I understand what you mean by the glazed look its tough going.
Keep sharing with us and try to get family to let you have a few breaks each week if you can .
One day at a time lovely
Hugs lynda 💜
Lynda - I took your advice and called my brother and told him that I need a few hours - I’ve never done that before. We took the boat out yesterday and just floated - a little Elton John playing and it was incredibly nice ... amazing what a few hours can do! 💛💛💛
Fabulous just what you needed .
You have a lot of family if they all take a little time to let you be free for a while you will get through this.
Good for you Kim. Im proud of you speaking up and asking for help
Hugs Lynda 🤗🤗🤗
I recall that glazed look.. And the eventual lack of facial expression, smiles, speech, and movement. There comes a point (or did for me -) when there is no APPARENT reward for all the things you do - except to realize that it is still, and always will be, your sweet momma, and you can and DO make her life better than it would otherwise be.
We're here to help keep your internal messaging strong and positive!. Hugs. ❤️❤️❤️
Anne G.
sorry to bring this detail up but my husband has not had speech in quite some time occasionally he will say things and they are on topic but they're very short with few words. Can you describe what you mean by the loss of speech
With my son, the only sound that came out was gibberish. He realized it and would resort to other means of communicating......writing on the palm of my hand, 21 questions with thumb UP for YES and DOWN for NO, pointing, etc. It sounds as if your husband still has speech....limited, but still speech.
Los Angeles, CA, USA
Hubby's CBS/CBD showed up first in loss of speech: he knew what he wanted to say but the connections between parts of his brain didn't work.
He was tested by a SLP and had full vocabulary recognition, enough cognitive strength etc but the connection to the speech centre in the brain wasn't working. His brain just wouldn't retrieve words.
He spoke in short generalized sentences and eventually just in single words - with difficulty. For a while the Neuros thought maybe he had PPA - primary progressive aphasia - but then the movement disorder started in and CBS/D was the clinical dx.
❤️❤️. Anne G.
Anne - words so true! As I write this (and I know this is trivial to most) —- sitting watching the morning news, having coffee with Momma - I sneeze twice and she looks up, smiles and says, “bless you honey” ... I’ll take it!!! God knows I just need the little reminders 💛 ((hugs friend))
You will keep on because you're doing it for her. It is hard beyond words. Allow yourself to feel frightened, take a deep breath and pitch in.
We all know. We've all had the tears.
Big hug from Jean x xx
Jean .. hugging you back!
I’m trying to allow this new change to settle in my heart, and begin to plan how I’m going to tackle this new reminder of this horrible disease. The first experience of seeing her look at me with what felt like emptiness was and has been overwhelming - it does come and go ... I am finding my private moments to allow my self release with a cleansing cry. (Thanks friend) 💛
I found Chris had an ' empty " look , as if he was behind a screen. Other times he looked at me as if I was his life belt. It must be so frightening for them. I was able to care for him at home because I used friends and family to give me short breaks. Absolutely essential . Pamper yourself.
And continue with the laughter even at the worst times.
Love Jean xx
" Can I do this???" for me doesn't mean ONLY YOU, without help. To me it means, if necessary, taking care of your mom with help or a nursing home, so that she is comfortable, and feels safe.
Perhaps, talking to your mom about the possibility of others doing the HEAVY PHYSICAL WORK would be helpful. Especially what are her "wants".
The emotional part, Kim, I get the feeling YOU can do it. I found it helpful to have the heavy conversations with my son. They were beneficial for the two of us. I got to do that with my dad too. My mother did NOT ALLOW those discussions with her.
Los Angeles, CA, USA
Kim, this is exactly the same advise I will give you. You can do this! But as you say, you are only human and it's time to ask for help. None of us can manage 100% on our own. It is not a weakness, or letting your Mum down, by saying you need more support, it's a place of strength. If you collapse under the strain, then what happens to her? We all think we are Superman/woman, until PSP reminds us we aren't. You are far too strong to let it dictate to you. Get some rest, get some help, you don't/can't do everything. Your Mum needs you to be at the top of your game and without help, you WONT be!
This is my biggest regret and failure. I thought I knew best and didn't accept help until far too long into Steve's journey, he suffered big time. Please don't let this happen to your Mum.
Sending big hug and much love
Lots of love
Anne
Anne thank you for this advice - the guilt is something I have had to work through. I was introduced to something called “Visiting Angels” ... they are strictly companion care —- sort of like adult babysitters —- I have contracted them for two days (3 hours) per week (Tuesday and Thursday) starting in a couple of weeks - so this is a HUGE step for me! Thank you for the friendship, knowledge and support - 💛💛
Well Done. Now make sure you have something to do, be it sleep, getting your hair done, coffee with a friend, anything to get yourself away. Of course it will be hard leaving your Mum with a stranger, but she will survive remarkably well, in fact far better than you will!!!
Oh and by the way, DITCH THE GUILT!!!
Lots of love
Anne
Thank you for this advice - so many heavy conversations to be had. I hope we can meet when I’m in LA 👌🏻
I don’t really want to say “me too” but tears rolled down my face when I read your post. OMG....sam’s grandkids just left & nothing but the glaze. It’s going on 6 years. Oh how I wish he could enjoy them. But they give him the biggest hugs! My heart & prayers go out yo you!
Ohhh it’s such a joy robber isn’t it! I look at my sweet Momma and as strong as my faith is, I find myself asking God why? She doesn’t deserve this journey ... no one does ... I tell her I love her 20 times a day and continue to surround her with love -
Dad got that glazed look, what I referred to as 1000 yard stare. There was nothing to be done, just wait for it to pass. You are doing what you can, safe and comfortable.
Ron
Thanks Ron - it’s so new and just took me by surprise. It’s brief but so present - trying to feel my way through this new darkness in this long tunnel ... hoping for some light to appear. What a journey ... one day at a time. 💛
Stay strong you are amazing the way you look after your mum and all the beautiful memories you make. Unfortunately this awful illness just keeps taking hold. Just be there for your mum and keep doing what you are doing and remember it’s ok for you to have bad moments as you are carrying a huge burden. When my lovely Steve was going through this I used to go for my morning run and have my little cry and then plaster my smile on ready for visiting him in the hospital. We all need somewhere to release our built up tension and stress and to be honest I still often have a little cry on my runs. We are all here for you.
Love Sarahxxx
Maybe I should start taking a morning (walk) (jog) and maybe eventually run 😉... that’s a great idea - I haven’t done that in years. As for the “smile” - I know exactly what you mean ... put it on like a pair of shoes and tackle the day. Thank you Sarah 💛💜
Just remember comfortable shoes and not heels. You don't want your smile to be forced and cramping. You want it to be like a good friend type of smile. Also don't forget to take the shoes off from time to time to go barefoot and allow yourself to relax your guard. Even for a brief bit of time. Finally, to continue with the shoes/feet metaphor, get a pedicure (respite/pampering) every once in a while. Just because.
Yes you can do it . You are doing such an amazing job of caring for your Mum. Just take each day as it comes and don’t look too far ahead. Things change all the time but they do for everyone.xx
Thank you for your words — one day at a time ... it’s not even like I didn’t know this was going to happen ...but, when I see it right before my eyes ... oh the reality of change with this disease just has taken me to my knees. I know God’s got us ... but the load some days is just heavy.
I so feel for you. It is tough trying to be positive all the time especially when there seems to be no response but your mum is there. Have a good cry and a deep breath. As AliBee says, your faith will help. As well as 'Footprints' remember the Bible verse that says He will never test us beyond what we can endure (even if we'd like to endure less!) and that PSP is our cross to bear, both carers and sufferers. Love and prayers.
It’s as if you are here ... I think I have been on the front line pushing non-stop, as if to say “CBD - You are not touching her!!!!” And the last week has been a reality check... a hard punch in the stomach that has quite literally taken my breath away. I have had my deep cry’s this week privately and I will admit that I don’t let myself go there ... but it was a release. I am being reminded that His strength is perfect, and I most certainly need to trust in Him. Thank you for your words. 💛
I'm glad they were of some help.
You have been so amazing with your mum, Kim, making her life as full of joy as is possible. These downturns are like a kick in the stomach. Maybe time for you to have a little break if you can and recharge your batteries. Love Hils.
I think you absolutely right Hils - I will do just that —- I have to do something 💛💛
Your words echo the feelings that I had also. As I read the loving posts from your friends in this community it warms my heart. They are so wise and loving.
Whenever I felt the way you are feeling, the verse of 2 Cor 12:9 would come to mind. There is strength.
Blessings,
Bobby
You are doing just fine! Being aware of changes as they come is important. The glaced looked is familiar to most of us here. It is sad to say the least...
You and your mom have discovered an important part of life's journey... being there for each other especially on the tough days & celebrating with joy & love.
Sending Hugs to you & mom... Granni B
Not what you're looking for?
You may also like...
Trying to stay positive
Hope you are all well and enjoying the heat. 😎
I wrote a few weeks ago about my CBD affecting my...
The joy of grandchildren..............
It was a 'Hogan Sunday' yesterday and I made the effort to take my camera with me..........
This...
Why is it so hard to find good care
Hi all
I need to let off some steam before I go insane. Since February we have employed PAs via a...
My JOY
We keep pushing through day after day. Swallowing is the chief problem every single day, and we are...
Moments of joy
I've just got back from a weekend at Mum & Dads and I'm pleased to report we managed to have some...
Trying...
Trying to find a care facility, not as easy as we were lead to believe.
Joy 204010
