The strangest morning. It’s almost 7am here, I have a twin bed in my Mommas room, and a small call button attached to the rail on her bed. Due to her voice that is now down to a whisper she can push that and it buzzes a wrist watch that I wear. (We have multiple buttons strategically placed where she sits, and one on a lanyard if needed- great system).
Anyway, early this morning I was alerted (she pushed the button), and I immediately pop up, thinking she must need to to go to the bathroom; which is a bedside commode at night. She looks at me, with what appeared to be great clarity, along with perfect volume, enunciation, articulation, and says, “ Maggie and a Sheila are coming over” —- and of course I responded with a couple follow up questions, realizing she was in the middle of a vivid dream. Selfishly, I wanted it to continue because her voice was so loud ... and clear .... and for a moment .. Momma was here again. She was saying some other abstract things, and the she just faded and a wanted to lay back down.
Oh, how I hate this disease ... despise it! Emotional roller coaster. I lay here, and I’m still reeling it all in ...
Some days, it really unfolds in front of me ... this morning I have sat watching her ... fading back into a deeper sleep ... I love her so much, and she looks so beautiful and peaceful resting now ... and that damn disease just attacking her brain. An enormous sense of helplessness overwhelms me; I’m sure you all know what I mean.
So for now, I’ll rest too —- and when she awakes to face the day, we will have our morning cup of coffee and a great big chocolate donut and be thankful for the life that we can still embrace.
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bazooka111
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((Hugs)) Georgeg25 ... I have captured her voice on video, filing it away --- I just know there will be a day that I will cherish moments of hearing her voice. I have on voice mail from my Dad ... I've had moments where I just want to hear his voice, and I play and re-play that recording .... Losing my dad 3 years ago, has prepared me to cherish the moments with my sweet Momma.
Hi Kim, I really hope you enjoy your great big chocolate donut. Oh I wish!!!
I know most of your posts are upbeat and showing everyone, life with PSP/CBD isn't all doom and gloom, which is great. But I do worry, that you are missing out on the support this site can give you. Us old timers can read between the lines and know full well what you are going through, those new to our site may not. We all need help to get through this and to finally hear you admitting to some of the horrors of this evil disease, is equally reassuring. Unless we know what's troubling you, we can't help or advise. There is a huge shoulder out here for you to cry on, a huge ear, ready to listen to you rant and rave. None of us are perfect, we all have down days, that's where this forum comes in, to unload your fears, worries and let's face it, down right anger and hatred for anyone and everyone, who inadvertently says something crass! There is nothing wrong with that, it's healthy to open up. Also, you will be doing someone else an enormous favour, loads read this site, but for one reason or another, don't take part. You telling it how life really is, will help them know they are not alone in feeling overwhelmed by this illness.
We all hate this disease, to watch your loved one disappear before your very eyes and not be able to anything to stop it, sorry I just haven't got the words to express that feeling, just it's a huge black hole that sucks you down, into a bottomless pit. You are doing all the right things, I expect a "bit" more rest, therefore extra help, might not go amiss.
Kim, carry on what you are doing, including your upbeat posts, but please remember we are here to help and listen to your fears as well.
I appreciate your words Anne; no truer words. I think I am fiercely hanging on to every thread of life as I know it, and just cannot let go and give in. Your wisdom and experience speaks to my heart ♥️ ... I am slowly facing this reality, and I believe that finding this forum over a year ago has been a life preserver .... appreciate your response, more than you know. (virtual hugs)
Without doubt, Anne has given you some very wise, sound advice. We are all different though and sometimes get through by doing things our way and this forum has obviously given you a great deal of support, even though you may not have given a real insight as to the reality of your daily challenges - most of us as Anne said - will read between the lines anyway. When I was a newcomer I was absolutely mortified by what I was reading and what might be ahead of me. Therefore, I didn't read what I knew would upset me, but I did get great 'in the same boat' comfort from dipping in and out whilst not bearing my soul. This was not a case of burying my head in the sand, for me it was my survival mechanism for getting through one day to the next without the forum posts exacerbating my anxieties. Even for me there came a time when I felt able to share with others the awful challenges and my experiences of the illness, but only when I was ready to do that.
The best advice from Anne's post is to get more time for yourself because you really cannot do this alone - your health and wellbeing is very important, too, and we often don't see that until it's too late. You are experiencing sciatica - your body is telling you something - you must listen.
Hils -- I have read your words at least 4 times over the last 24 hours ... so much truth in your response to me. If you lived close, I would ask to go to lunch I read a lot on here, and yes there are posts that absolutely terrify me -- doses of reality that I will be facing ... I can only take small doses at a time. I have my challenges ... as everyone on here does ... realizing this disease has different faces, but very much the same ... every day brings on something new. I am too, just surviving.
Thankfully the sciatica beast has been tamed, definitely not as fierce as the first time around, but certainly not something I would wish on anyone --- whew!
So, I think this is Day 44 in quarantine, and Oh Lord I want this to be over ... I have a bowl of chocolates in front of me, Momma and I getting ready to start one of our favorite movies with Gene Wilder -- the original Willy Wonk and the Chocolate Factory!
Kim, if we didn't have that big old pond between us I would take you out for lunch every week to give you a few hours of 'you' time. Maybe we will meet one day, who knows?
I fully respect you wanting to do things your way - you know there is always someone on here ready to chat when you feel the need. I'm not one to shout and scream and my way of coping, like you, was to try to keep things light; it was ok to bring fun and humour into the most difficult times. Rod had a wicked sense of humour pretty much until the last few weeks when the flickering flame was extinguished - sadly, you just never know when things are going to change. It's very obvious from your pictorials that your mum has a wonderful sense of humour.
Carry on as you are doing; you really are inspirational but putting time aside for you (and hubby) is so very important as well.
Big hug across the miles,
Hils
x
There are other stories on here like that when someone has a very lucid moment or day. It’s so exhausting dealing with these diseases.
One of the cruelest aspects of Rods illness was what I called 'the flickering flame'. The flame was always there even though at times almost extinguished. Then, just like a dying ember it would suddenly reignite and for a moment, sometimes longer, the person that I once knew would be back. PSP played with us, it was heartbreaking to say the least. I understand completely, Kim, how that moment with your mum will have pulled you apart. BUT just keep on as you are doing, live in every moment and keep making the good memories, including tucking in to chocolate donuts, cos they are going to serve you well somewhere along the bumpy road.
On a separate note, hope you are continuing to make good progress with the sciatica - it's a tricky customer to get rid of.
Hi Kim, I’ve only just seen this post for some reason. I found it when I was about to private message you. I remember how I felt when my darling would suddenly speak clear and loud after silence for months. We do want it to continue don’t we. I think it was a reminder to me that he was still there. You are doing a wonderful job Kim and I’m sure your mom is receiving better physical and emotional support from you than she would ever get from anyone else. I read Anne’s reply and agree with what she said. I never let go or gave in but did face reality and knew what was to come but right until the end we could still laugh together about things. Those living with PSP and their carers all have different personalities. When things are really difficult, some will cry or scream, others will just get on and sort it and may even see a funny side, others do both. Be true to yourself. If you want to cry or go somewhere and scream do so but if you want to laugh and do fun things, do that as well. As my plaque at the bottom of my stairs states, “ Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain”.
Sending you a big hug Kim and thinking of you and your family in this strange time.
Aww NannaB - Thank you for sharing.. I am definitely dancing in the rain, and probably getting on everybody's nerves. No doubt. I have never dreamed that in all of this CBD/PSP, that we would be, not only 100% caretaking, but quarantined on top of that ... there is little escape; not able to bring in extra help without taking risks; which I am not willing to do. My husband is a dream -- he is my ROCK, and I feel incredibly blessed to have the support of my two adult children, my hubby and my best friend Linda -- They have been wonderful in assisting me along the way.
Interesting characteristic that has surfaced with Mom, and it probably encourages me to take a step further, and that is giggles and laughter. Mom tends to laugh at the most unexpected moments, as in something that is really not funny --- but, yet her emotion explodes into laughter. This actually happened early on, and its not all the time, but it does surface. Interesting how the brain works -- its mystifying to me sometimes. We deal with it.
Mom cried a lot as she mourned my Dad, her grieving was difficult ... fast forward to now, she doesn't cry much anymore. As I type this, I cant remember the last time, thats how long ---
So, we dawn our rubber boots, and pull out the umbrella in this storm that doesn't seem to go away, and WE WILL DANCE IN THE RAIN!
My husband did the same. Laughed at sometimes inappropriate times. One day when I was having an awful time cleaning him up after an “accident” he started laughing. He hadn’t spoken for ages but I said something like, It’s alright for you to laugh, it’s me at this end, to which he replied clearly, “Well it’s better than crying”. He was always positive, my darling.
I just wrote a long post and lost it. I just want to say that without these lovely people on the site, I am sure I wouldn’t of been able to do all that I did for George, any problems we had there was always people on here to help you through them, with advice and so much care, always following it up. I remember when George tried to talk, it was difficult to understand him, but I could. Kim so pleased your mum spoke to you clearly, PSP is a horrible horrible illness, some of us have come out the other side, and we are able to give sound advice, the best advice that you can get, it was my lifeline going through this, if something happened I knew that I would get my answers from the amazing people I met on here along the way. It is very hard coming out the other side, it doesn’t feel easier it’s a very sad time, I have got a new counsellor and she is helping me through this, and friends I have made on this site is there to help. Big hugs Kim.
Yvonne -- 100% agree. This forum has been my go to ... and I do realize that I tend to spill out the joyful moments more than the negative, and yet -- I probably need to just be more transparent, or rather a good balance --- We are all different in how we process, and I work hard to stay positive -- but this disease, is a beast, and has challenged me like no other.
Great reading your excitement, and thanking God for those small moments of absolute pleasure! Can't help thinking as to how her voice and speech could be delivered with such clarity! Could there be a silver lining ahead?
I completely believe in silver linings ....and, I do believe it was a small gift ... that I didn't want to give back. I realize that life is dimming, slowly, and I try my very very best to cherish the days I do have. .. and when something like this happens, I froze .. in shock. Simply beautiful moment.
I don't post often, but lurk around on here offering help when I see something that I feel I can help with. I see you as a positive person who has done a great job for your mom. I hope you are doing as good a job for you.
I don't know if you have help or not, but you will need some at some time if you don't have help already. You also need some time away from the disease. It doesn't get easier. I'm not talking long stretches, just moments. I found taking short breaks, more frequently, to be more beneficial because when you are back the away time is soon forgotten. I don't think it's important what you do while you are away, just the fact that you are. I say this because I tried to take a week away one time and found that all of the arrangements necessary to make it work were exhausting and the week sped by. Then, after returning, I felt like I hadn't even been away within half a day. The little brief moments lasted just as long.
I really learned what it was to compartmentalize during away time. While away try to focus on whatever it is you are doing. If with a friend, try to switch the conversation away from your mom and your caregiving worries after briefly giving an update on your mom. Bring your worries here because your friend won't really understand anyway unless he/she's been through the same kind of all-consuming caregiving experience. Try to remember that it is just as important to take care of you as to take care of your mom. It's important that you don't lose your 'self' while you're doing it. Keep making those great memories, they will be there for you when it's all over and it's fun for us hearing about them!
Pat, I really appreciate your perspective, and your wisdom speaks to my heart, so thank you. You are absolutely right, and I truly do need to make arrangements to step away. We started having a gal come in twice a week for a few hours before this quarantine, so I am looking forward to getting back to that -- In addition, I did reach out to the hospice center, and my Doctor started the referral process for palliative care -- we are in like Day 44 of quarantine -- trying to maintain optimism.
As I sit here typing on my computer, my sweet Momma sits here enjoying an ice cream bar, smiling at me, desperately needing a napkin (Iam sure you can imagine what this looks like) ... she steals my heart, and oh how much I could just reverse time, to better days.
Thank you Pat for taking the time to share with me.
Hubby and I went on a short stroll before the weather became too hot. I video’d his slow and shuffled walk. I asked him to stop for a minute. He repeated my words “stop for a minute” then he stopped in his tracks. I asked him if he loved me to which he replied “of course”. I said “I want to hear you say it”. He said “it”, then he roared! I know I will play this video over and over. It’s wonderful to hear his voice and to be reminded of his sense of humor and how I fell in love with him.
Heartwarming SewBears, just heartwarming. Take great care of that video cos one day, for you, it will be priceless, and when you look at it and hear his voice, you will smile. My videos of Rod rarely make me cry, they just take me back to the happy times, and there were lots of happy times even at the height of his illness, and to hear his voice makes me so happy.
This disease never fails to send a curve ball-just when you think somethings are gone forever-Surprise! Hold on to all the good surprises, they will become positive moments in the journey. Thank you for sharing your feelings and stories , please don't hesitant to share the joys and the struggles. Its what makes this site so important to us all.
Could you possibly share the name of the watch/buzzer system you are using for your Mom to alert you if she needs something.
I have the wrist/pager, and also have the Wall pager for the entire house --
Insight: So the first purchase was the wall pager, so when mom would push the button the bell would go off wherever we plugged the bell into the wall; I had one on every floor of the house. I realized that she was hesitating in pushing, because it would go off all over the house, and it would alert everyone at the same time -- she didn't like all the attention; just to go to the bathroom. SO --- I ended up buying the more personal system -- wrist / pager --- so now, she pushes the button and it goes off on my wrist, and no one has to know! This private system works beautifully at night -- I sleep in the same room, and because she can no longer vocalize her need of me, she has one hanging on the bar on her bed. I have one on her side table, next to her recliner, and I have one attached to the counter next to the toilet, so she can have privacy (or as much as I will give her), and she can call me when she is finished. I believe this has given her a sense of security, knowing that I will be there within seconds if she pushes that button. It is beautiful, and has really become a major positive change in our daily routine.
Now, the house pager is still plugged in, and I had to use it a couple of weeks ago, when mom fell and I needed help. So we now will use the wall pagers for me, in case something happens and I need assistance to help mom .... hopefully we rarely need to use.
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I read a lot on here, and yes there are posts that absolutely terrify me -- doses of reality that I will be facing ... I can only take small doses at a time. I have my challenges ... as everyone on here does ... realizing this disease has different faces, but very much the same ... every day brings on something new. I am too, just surviving. 
"When I'm gone"
Things I like, things that help and things which don't
