Here I am after another day of what I call (Dancing the F and F = Fear and Frustration). Each day the challenges are greater and it's getting harder and harder.
Today, Charles froze in place, standing. I was so afraid, called Hospice crying.
Fear = Anger and well, we all know about Frustration. Both are so hard to understand.
I just cannot tear my emotional side from the clinical. I'm a wife and a caregiver. I wish I could be different and calm but when something "new" comes up I fall apart so I dance the F and F again.
Charles always forgives me and always wants me near. I wouldn't want me near given the above, but he still is my strong, silent partner who loves me still.
Cuttercat
Written by
Cuttercat
To view profiles and participate in discussions please or .
I'm so sorry to hear about your day - the rollercoaster of emotion is so draining isn't it?
What did Hospice advise you? Did they tell you anything you didn't already know? Any tips?
What got you through that episode? I assume Charles is now sitting (or lying) - hopefully somewhat comfortably and you are able to take a deep breath and pat yourself on the back for getting the two of you through it!
You are an amazing caregiver and wife! You must tell yourself that - and believe it! - every day.
I’m so sorry. I understand how awful this disease is.
I admire your ability to still feel love and closeness with Charles. With my husbands lack of communication and inability to show much emotion, along with the struggle to take care of him, I sometimes feel numb. I also feel he may be angry with me at times.
My Dan is a truly gentle, kind and loving man. I just wish We could get another glimpse of him. Sad.
Karyn you can. He is still in his body. He loves you just as you love him. Hold his hand and tell him. He might not be able to tell you the same but you will raise his spirits and maybe yours too.
Marie , I know you are Absolutely correct. At some times I just feel so hopeless, defeated, drained and tired. Each day it all just begins again. Perhaps knowing he’s there struggling and suffering is even worse then thinking he’s not aware . I speak to him almost constantly , telling him everything about the day. I know my turning him, cleaning him etc is hard on him . It’s all just sad for all of us. We try to make it the best we can. I hope I can buck up and do a little better.
Dear Karyn we have all been there and indeed many still are in your position. It's normal to beat yourself up emotionally. You want to be perfect as everyone does. However it's pretty much impossible. We are all human after all? We can't be that perfect person we want to be but we can be aware that time might be short. More important to my mind is just sitting and holding hands and saying you love him.
That will give you great comfort later when you think back. However don't try to be perfect because you will certainly fail. I know this to be true. You can join my club!! Be kinder to yourself. I think you are doing a great job of caring for your loved one.
You are tired because you need a break. Does anyone help you care for your husband? Have you had any respite? It seems to me you are wearing yourself out. I got to a stage where I honestly didn't think I could go on. Respite is important. If you can get some grab it with both hands. Get someone to stay with your husband a couple of days a week and escape! Even if it's just to meet someone for a coffee.
Yes the inability to communicate is awful and so sad. Glimpses come and go. I asked Charles what he thinks about and he said it comes and goes. Not structured. But I remind you that this is from my questions not his communication. Occasionally he will say something. It's sweeter as time goes on.
Cuttercat, your man is still surviving this evil disease, in the best condition that is possible with PSP. He loves you and forgives you. Sorry, but I fail to see where you are going wrong????
Cuttercat I don't know what they advised but when this happened to G I said left,right,left right and he started to move again. I read about it somewhere so used it. The carers had no idea how to get him to move and were amazed! I don't know if it works for everyone or maybe they gave you another suggestion when you rang the Hospice?
It is scary when it first happens and in G's case it only lasted for a while before he just couldn't walk. We had a piece of equipment that he was tied to and two carers had to push it. There is no way I could have done it alone. So think ahead? You will need something similar and carers if you don't have them now.
Of course he loves you, he is still in there and can understand all the love and care you give him. Give him a big hug and tell him you love him.
I am delighted it worked for you. It did for us too for a while but eventually he just couldn't move. It's very useful to know about it though? As I said the carers had no idea what to do and were on the brink of panicking. The brain takes longer and longer to process information but if you shortcut it by giving a direction which is slightly different it seems to work.
I have no idea where I read about it but I was so glad I did.
The stand assist sounds like the next step. I think it was something similar I had for G. I had one downstairs and one upstairs. I will check to see if it's the same but if it works for someone else then it will almost certainly work for you.
Hope you told him you love him too? It's so easy to forget that someone with PSP can still hear you until the end. It's heartbreaking they can't always reply. G was pretty much able to tell me he loved me until a day or so before he died. So never give up my friend.
Charles and I tell each other we love each other all day long! We have hand signs, he wants me next to him in the bed, he writes on the board and he listens to me when I tell him sweet things and sing him songs. We have a daily ritual of little things that make us happy. I hope it helps him. It sure does me.
Everyone calls him Mr. Google. When we forget a name or something, he can tap on the alphabet board and he's is always right. Amazing.
He is strong but so very thin it is so hard to see him but he is still with me and each day is precious.
You are managing so well, cuttercat. Of course you are both frustrated and frightened. All he wants is the comfort of you being there. Big hug for you. love from Jean xxx
Cuttercat and anyone else who is at the point where walking is no longer safe for their loved one,
At the risk of sounding like a broken record, I recommend a stand assist device. Our OT recommended it for my husband and it allowed me to safely care for him at home for an additional six months or so. Lumex makes an affordable model (they can get very expensive) which is available thru Amazon and other medical suppliers. From the time I got this about a year and a half ago, my husband hasn't had any more falls. With this device, we were able to ditch the wheelchair except for outings. They are still using it in the care home for him and other patients with mobility issues.
I know I have been on a mission about this, but I feel very strongly about it. I hope it helps others to better manage their loved one's care.
My husband wasn't walking anymore when we got the stand assist device. It worked perfectly for transferring him. So much better than trying to transfer from the wheelchair to the commode, etc.. We were having problems with falls when he was trying to transfer. Maybe you don't have that problem. If that's the case, just disregard the suggestion. There may be others on here who could benefit from having one though.
The stand assist device I'm talking about is hard to describe, If you google stand assist device, you can see pictures of them. Some of them get pretty elaborate. It's not necessary. The one we have is made by Lumex and is very simple. It has a wide platform to put your feet on. There is a bar to pull yourself up with into a semi-standing position. There are 2 half seats which flip around behind you. You then, sit and sort of slide down into the knee cups which hold you secure in position. Your caregiver then can roll you around to your chair, the commode or to bed. It's designed so that it will position you over the commode, the seats flip up and you lower yourself onto the commode while holding onto the bar. When done, you pull yourself up and the caregiver flips the seat back under you. You do the same when moving to a chair or the bed. It's very safe. This was by far the best thing I bought to accommodate my husband's disability. I hope it can work for you.
Many of us also dance the F and F and truly understand what you are going through since we are living it, too. May you gain strength, peace and comfort in the knowledge that Charles wants you near because he loves and trusts you.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
