After thought: This showed me how much what makes me happy, has changed. My hopes are far different and much sadder now as psp marches on. Hope is sure a precious thing and feeling helpless to help someone you love is one of the worst feelings ever. (I was first introduced to that feeling when Mama died at 34 from aggressive/fast acting cancer when I was a dumb 16 yr old who did not know how to help.) I miss having "hope" to stall psp, and since all I ever post is SO DURN DEPRESSING because I come here and read and cry and pray for us all. So, I thought I should share this moment of being GLAD for a change. Soo ok Daddy has recently been assigned a nurse who checks in on him about once a wk at this time and she told his wife the other day she can tell he's eating a good diet because his skin looks good and it heals despite being bed bound for going on a year. I reposition him during the night and cook all his suppers and put a lot of effort and thought into meal planning especially because there are serious limitations to what he can manage to chew and swallow and because his appetite is half what it was before psp. I'm working on a budget too, so that's a lot of criteria. HOWEVER... knowing for sure it's helping him made every step I've walked on my plantar fasciitis, and every minute of planning meals and cooking... SO WORTH IT!! I and we feel excruciatingly helpless in the face of this brutal disease that has no treatment much less a cure, so this really made me feel... not quite as helpless. And as I write this I see, it's full circle, couldn't help Mama but I've helped Daddy. I just wish I could do more (aaaah so negative!) haha I tried!
This made me so happy! + DIET DOES MATTER! - PSP Association
You are so right. A good healthy diet makes all the difference. It is when they can't take in enough of the good stuff that the sores start. That was when my hubby agreed to having a PEG, when he still wanted to eat but couldn't eat enough. He developed a sore which would not heal and got deeper and bigger until the PEG was fitted and then it cleared up within two weeks.
Keep on with the cooking. It is definitely worth it and you can be proud to know you are doing your best.
Thank you NannaB! You're the best!!!!! And I wish my Dad was going to have the PEG but he's not which is something that lurks in my thoughts night and day. I'm a caterer and I enjoy feeding people (haha) so if I have to watch him starve some day... that will seem wrong for many reasons but it's out of my control. It's his wife's decision. He's no longer capable of decisions. I just pray it doesn't ever come to that and thanks be to God it hasn't yet although he's had psp symptoms for over 10 years. And if he gets a sore that won't heal I need to remember your story here so I can try to convince his wife and or him to have the PEG. It's not my choice but sores or starvation or dehydration does not seem like a peaceful way to go.
Don't worry about the end. The last 11 days without food, medication or water were the most peaceful my husband had gone through for 6 years. The body and spirit knew when it was time to go.
I have had the experience of that most peaceful time with a brother dying with HIV - we all relaxed and taking Care of him took a back seat to just hanging out and talking on and on - He enjoyed the peace as well.
Hi, I agree with NannaB. Don't worry about him starving to death. It doesn't work that way. Steve didn't have a Peg fitted, he slowly ate less and less, the body, sort of gets use to not having the same amount as you or I need. The last weeks, just consisted of me trying to get anything down. Mostly tubs of rice pudding, until eventually, he couldn't even swallow that. He gradually got weaker, but could still stand, up until three days before he died. When he finally took to his bed and didn't eat or drink anything, were the most peaceful times for both of us. Slowly he drifted away, not in any discomfort or pain. Allowing for the fact, we all have to die, it was very calm and comforting. A real privilege to be around. That's giving me enormous comfort, in these dark days, trying to get use to him not being here. Steve never had any sores.
Lots of love
Hi NannaB, I am interested in what you say.
What food was your husband having thro' the PEG. Was it the little bottles of milkshake sortvl of stuff, or real food liquidized?
Yes it was Ensure, like milkshake but a 220ml bottle contained 330 calories and all the vitamins and minerals he needed. For my convenience he could also have larger bottles that were pumped in rather than me using a syringe and they were 1500 and 2000 calories. With the pump and special backpack I was able to take him out anywhere and not worry about feeding him.
It sounds like you are doing a good loving job.
Best any of us can do.
I'm glad that for a moment you saw the good that you were doing. We need to give our selves a hug not just from time to ttime but daily......its so easy to fall into hopelessness which of course hinders the success of others around us. It's not so much "staying strong" as it is recognizing the good and getting the joy . Now that dad (B) is bed bound with days or weeks or months I cannot do anything more than find the joy.....My daughter is staying with us...praise God....Dad is still somewhat able to manage his care in that he can use the suction machine; he can thumbs up/down for his communication; he can kiss his grandson goodbye for the night....and all the family is together the greatest joy of all....
I'm sorry about your mama so many years ago. I have lost all my family on my mothers side; my brothers, my mom, never had my dad, all my aunts and uncles not many cousins but I gained a most wonderful family when I married Bruce and I certainly have gained a most wonderful family here on this site . I almost feel guilty that I am not swallowed up by grief as I see my husband at the end of his journey in this world (I feel more melancholy and that there is still work to be done for his comfort and upkeep) . But the experiences here have so given me strength and understanding and allowed me to keep the joy.....I am lifted up also by the joy of Bruce and my spiritual goals...He is about to meet Christ....Lucky guy!
Yes AVB I agree they're about to meet Christ and that makes them very fortunate. I'm sorry for your earlier losses too and that you never had a dad. I admire your whole perspective, thank you!!
Give yourself a massive pat on the back. You are doing a wonderful job of looking after your dad. Never ever feel guilty XX
I know what you mean. Our nurse told me how Chris' good skin is due to me feeding him a good balanced diet. I felt so thrilled. His frequent grazes heal very quickly.
He has more puddings than I approve of but what the hell !
love, Jean x
Yes you are doing a wonderful job looking after your dad, giving him a good diet. I always cook myself and give George lots of vegetables, really try to give him lots of nice things to eat. Yvonne x
You are doing a wonderful job and yes, you should be proud of yourself. Lots of love Nanny857xx
Thank you all for the kind replies!! I've begun to believe that with psp, so often the characteristics are different for each sufferer and the end is also different. I see some who could manage so much more than my Dad but then they cross over to the other side before they ever get as bad as he is. The only great thing he can still do is eat albeit very extremely slowly. He can barely answer yes or no and sometimes not even that, nothing at all in response to questions. His body is SO rigid and stiff. I'm thankful he can eat at all and really hope when he goes, it's peacefully in his sleep from the stage his psp is in now and not more of the psp before he goes. But have you ever heart the expression, if I poop in one hand and wish in the other, which will fill up first??? That comes to mind. (If that makes no sense to you please ask. It took me years to figure out what it meant haha!)
I know what you mean by the differences. I've seen people post how they and their LO were out and about and then they were gone the next day...My Mom is in the same shape as your Dad except she can't feed herself anymore...and yet she is still here.
Oh Daddy can't feed himself either and hasn't for months and months. Sounds like your Mom and my Dad are in the same boat. Also Daddy can't stand at all and can only be moved from the bed in a hover lift. Been this way too for months and months, and like you said, and yet he's still here.
wow - wonderful to hear positivity from a carer - i took care of my dad for about 8 months during his last stages - best wishes to you and your family