7 Day Difference : For the first time in... - PSP Association

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7 Day Difference

bazooka111 profile image

For the first time in almost 3 years, I made the decision to accept some speaking engagements and used a local respite center. The decision was hard for me, but for my own mental health, I needed to get out and feel like me again. Caregivers guilt is real.

Within 48 hours, mom became lethargic, non-responsive In communication and wasn’t eating. I was a basket case all week, trying to communicate her needs; this was falling on deaf ears. As much as I tried to educate them on what she needs unique to this disease … no one seemed to understand.

I have returned home and I am praying that Mom will slowly come back to me. I know without a doubt her brain was overstimulated and she is exhausted. She is staring, and will smile when I ask her to. Pocketing food as I feed her, and constant reminder to chew and swallow. Her body is weak, and she is so very tired.

This week is eat, rest, eat, rest on repeat. No unnecessary stimulation… I’m not sure what else to do.

It’s amazing how 7 days away can make such a difference. Oh, my sweet Momma.

25 Replies

Love and hugs to you both xxxx

bazooka111 profile image
bazooka111 in reply to Helen119

Hugs to you also! Xo Thank you Helen

Kim, Please don't beat yourself up over other people's failings. 3 years is a long time to be constantly on alert and, though it sounds like it wasn't accomplished, because of those failings, you needed the respite. I hope that your mother is able to climb back to her previous level so we can see more pictures of her smiling face.

bazooka111 profile image
bazooka111 in reply to Railfan

Thank you for your kind words - these last 3 days have nothing more than sleep, eat, and repeat. Zero stimulation and complete rest … she is beginning to climb out of this I think. This disease is relentless

Take care lovely one x

Kim, please don’t beat yourself up. I use to put Steve in a nursing home for the odd week for respite. I always, always thought he took a nose dive during his stay. Thinking back, with wonderful hindsight, being apart from him, made me realise or even notice that things were going down hill fast anyway. Just when you see someone on a day to day basis, you don’t notice that little bit extra effort you are taking to do the same thing you did last week. It only comes to light in the tiredness you are feeling, the need to look after yourself. Carers guilt is very real and takes a long time to get over, but please, please stop and think how you will feel, if you collapse, due to not taking care of yourself and your Mum has to go into a home permanently. Your health and well being is vital to your Mum’s care, if that means the odd week in respite, then that’s what it takes for her to be with you, that little bit longer.DITCH THE GUILT KIM,!!!

Sending very large hug and much love

Lots of love

Anne

bazooka111 profile image
bazooka111 in reply to Heady

I want to give you the biggest hug Anne. I read your words with tears this morning; I’m so very tired. ((Hugs))

Kim,My heart breaks as you enter this phase with your momma. Prayers covering you and her.

I think you would be an amazing public speaker based on your posts. Caregiving is hard, but you need to have some variety in your life. I wish you success.

Bobby

bazooka111 profile image
bazooka111 in reply to Beads0122

Bobby thank you so very much. It’s amazing how this journey has flavored my speaking. I am a motivational speaker, and speak around the country and different events — mostly my message tends to lean toward purposing your passions in life and never giving up. My audience is usually teens and young adults —- sometimes corporate adults. Funny thing - when I spoke last week, my journey with my sweet Mom offered great reflection on how we all need to step back, and take full inventory of our lives —- what / who really matter most … one life we live here, and oh how short it can be. Thank you for you kind words. Blessings to you.

I'll just echo what Bobby and Anne have written. I'm sure she's welcoming the rest, you can see a hint of her beautiful smile as she sleeps. Much love, hugs and prayers to you both at this time.

Fiona

Thank you Fiona - I hope you’re doing well. I have been loving on her the last few days — nursing her back to me. Praying every day. ((Hugs))

Leave any guilt at the door, Kim. I'm sure she knew you needed the respite. Hugs and prayers for you and Momma. Her smile can brighten any poor mood, she lights up the room including mine.

Tim x

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bazooka111 in reply to daddyt

Thank you Tim! You are correct - I shared with Mom the need for me to go out and accept a few speaking engagements- she smiled as we discussed, before I left … and she did encourage me to go. Forming words like “go” or “it will be ok” .. Mom used to travel with me, so she knows my heart … and I was at ease in going …. But that dang respite center … selling me on how beautiful the community is there, and the premium care ——- I could write a book. I’m

Happy she is home with me.

I also did a respite with Charles. It wasn’t helpful. I went home during the day but slept beside him at night. They didn’t feed him foods he could eat and he sat there lonely and sad. It wasn’t a good experience. I kept him home and was with him always. I hired help for several hours each day. It was worth it. No regrets. Like your mother he was confused and despondent. We never did it again.

Love

Cuttercat

I know what that’s like!just returned from respite-never again I hope.Jane x

I’m with you on that! I couldn’t get her out fast enough.

It is absolutely horrible — no one seems to understand the needs with this disease — so upsetting.

bazooka111 profile image
bazooka111 in reply to Cuttercat

Cuttercat — facilities are just not going to be a match. I tried everything to prepare that staff and the care I expected for my Momma — none of it happened. She was treated like she wasn’t there — if there is one thing I hate, is “baby talk”, as if she is not there. So dehumanizing. She is all there … maybe on delay, but she is there! And the food … my goodness- the list is so long. Never again! The help will be brought into our home from this point forward —- yikes it is so expensive, but we will figure it out.

Cuttercat profile image
Cuttercat in reply to bazooka111

I’m with you dear girl!! 👍

You’re an inspiration to me, a fellow daughter of a mum with PSP, how you care and love your mum is amazing. But you are not superhuman and have your own needs, please try and be mindful of when you are guilting yourself and be as kind to yourself as you are to your mum. As your mum progresses it’s so important that you have support too, I hope you do xx

bazooka111 profile image
bazooka111 in reply to Hdee

Thank you so very much x I have managed to build a small tribe of support around me, and that is only because of the amazing humans in this forum that encouraged me to do so. Getting back to doing what I love, even for just a few days … was short of amazing for my mental health. Of course, being away was so very hard, and the worry builds … bittersweet respite.

Hi, Catching up on recent posts, such an amazing support team we have here!! Kim, leaving care of our loved ones to someone else is a tough decision even if only for a few days. It is never the same as home!! I worked in long term care for several years and I recall one supervisor telling us that families have a hard time with the fact that it is not one on one care and adjusting to the needs of a new patient is challenging for staff and the families. It is always a set back when they are placed in different environments . Not the best circumstances , but sometimes its a necessary choice. Glad Momma is back home and slowly returning to her baseline.

Guilt has no place in the lives of caregivers , but it creeps in when we least expect it. Her smile is the life line to her heart, hope the smiles are back as big and bright as ever!!! HUGS!!!

Hi bazooka111!

I'm sorry you're having these bad times.Through the internal chat I have sent you some ideas, experiences and reflections on these difficult moments.

A big hug, luck and courage.

Luis

Someday I hope to hug you and thank you face to face for all that you have shared with me throughout this journey! Truly -- deep gratitude for you my friend. Big hug back. -- P.S. I am plat here 2:20 am -- Mom is restless and cannot sleep, and I sit here by her side. xo

Thank you for your words. I am gratified if I can be of assistance.Hug, luck and courage.

Someday, yes.

Luis

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