The grandchildren have been today. About 2 hours after they had gone Craig asked me where the little boy and little girl had gone 😢 I really don’t know what stage we are. His mobility is virtually none, his eyesight (double vision) is awful, he has lost so much weight and chokes after most food and drink. He suffers with constipation and also struggles to pass urine. It has become more difficult to understand what he is saying.
Makes me want to cry: The grandchildren have... - PSP Association
Makes me want to cry
Written by
Unicorn2022
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30 Replies
•
I’ve been rolling what stage are we in around in my mind daily for some time. I know it’s more towards the end now. How long that will be in coming is anyone’s guess.
Unicorn2022• in reply to
It’s awful when the “bad” thoughts pop into your head and you can’t unthink them but that’s what is happening all the time. He is getting worse, each day or at least it feels that way. I suppose because we are unsure when he was first displaying symptoms it’s difficult to know how long he has truly had PSP, I can go back 3 years definitely when we knew something wasn’t right but it maybe longer. What a truly horrible disease
• in reply toUnicorn2022
The decline is so incremental it’s almost not noticeable until I think back to 6 months or a year ago. The whole downward drift has been like that. Some little thing he can’t do readily any longer to he can’t do it. My time line is maybe he has a year. Maybe less. As you say it’s a feeling.
We all have had or are having dark thoughts when we see our loved ones declining and their lives are so difficult. My heart goes out to you both, so so difficult, all you can do is keep on keeping on and try to make them as happy and comfortable as possible.
Love Kate xxx
The "bad" thoughts are terrible. Each day, for probably the last year of Steve's life, I woke thinking, "is today the day". Suddenly, that day did come and the relief was enormous. Not that I was glad he had gone, but the suffering for both of us was over. Do I feel guilty about this? No! I have accepted it was part and parcel of this evil disease.
What I would say is though, you know that day will come, so please try and accept this. Stop worrying about what stage your husband is at, this won't put off the evil day, or bring it closer. All it does is, waste the precious time you do have left. Concentrate on today, make the most of it, hold him, cuddle him, tell him you love him. Go out, if possible, even if it's just to the local supermarket, (flat and dry!) ask friends or family to come around for takeaway and whatever your drink of choice is, anything to make life seem slightly normal.
My heart goes out to you, nothing is easy, once PSP invades your life, all you can do is take each day as it comes, today will throw enough problems into the works, without worrying what tomorrow will bring!
Oh, and DEMAND that you doctor takes his constipation seriously, there is lots they can do, but for some reason, mine refused and get a catheter fitted, this WILL ease a lot of problems.
Sending big hug and much love
Lots of love
Anne
VonTripe• in reply to
Feel exactly the same Impossible to know but i suppose we go with our gut feeling although as unicorn says I dont know what stage my husband is at he is now catheterized , he has real trouble with bowel movements We stil lhaven't got the balance right after 2 years he has had PSP for nearly 6 years we think No mobility but can still eat ok chokes a little but eyes ae fine Feel as though we take one step forward and two steps back, yet although confused the tests show thee is nothing wrong wih his brain !
It’s such a horrible disease. It seems as though everyone progresses differently. Craig still knows his passwords for account - still got his grip on the purse strings 😂😂xx
• in reply toVonTripe
It’s a maddening disease.
I’m so sorry for your struggles. If at all possible try to live in the now. Easier said than done as I don’t often practice my own rules.
When Craig asked you where the little ones had gone it reminded me of a story that happened around the end of May this year.
Not too long ago I invited a long distance cousin and her partner over for dinner. In fairness, my husband had not met them before. We spent several hours talking of our youth and had some fond memories of our childhood. We enjoyed breaking bread together. As I walked my cousin to the car she told me how well she thought my husband was doing.
So... I went inside to tell hubby what my cousin mentioned to me and he said “who are you talking about and why would she say these things?”. I’m like 🙄 we just spent an entire afternoon and evening with these people and I’ve been telling him about their upcoming visit everyday for months. How could he not know what I’m talking about?
The point is that we had a good laugh over this. Especially my cousin and I, not at my husband’s expense. Just the irony. At least Craig remembered that you had little ones over. Sometimes you just have to see the beauty and make the best of a horrific situation.
If you can’t cry, laugh like a crazy person. I hope you find humor where it might not exist.
Sending hugs from I SewBears
Xoxo
We do laugh, well I laugh but Craig’s face tells a different story. He had such an infectious laugh but now he starts to choke when he laughs but he has a twinkle in his eye x
That twinkle is soooo important. Nigel had it almost to the very end even though, like Craig he would choke if he laughed. It makes you realise that the person you knew is still in there. I combed his beard and eyebrows the day before he died as one of our carers was coming in to see him so I told him I had better make his tidy for her. Having finished I looked at him and siad 'wow. What a handsome chap you are'. No sound came out but his eyes twinkled and he nodded his head up and down. Such a special memory. Big hug. AliBee xx
Awww that’s beautiful. Lovely memory. 💕
Ben always kept that twinkle in his eye and sometimes managed to break into a grin. I have a photo with him doing just that and it reminds me of that 'naughty boy' that always lurked inside him. Xx
I have started taking lots of photos, especially with the grandkids. I’m mindful though as I know Craig looks in the mirror and the man he was is not looking back 😢
The toll these diseases take on everyone involved is terrible. His short term memory may be failing a little, Dad's did. Have you discussed with his doctor about the constipation? I learned there is a fine line to walk with meds for constipation, too much and you end up dealing with the other side of bowel movement issues.
Ron
He has movicol?? It does the trick when he takes it, he can get quite annoyed if I try and make him take things he doesn’t want. I try to get him to drink water but everything he eats or drinks he has a bout of choking and liquids are worse x
Do you use thickeners for his liquids? It really helps with the choking. I find I keep having to adapt Mum's level of laxatives, she tends to think if she's been she doesn't need them and then of course we get bunged up and so have to go to a higher level which leads to it's own problems. Was trying an extra half sachet every other day to try and get some sort of pattern as 1 sachet wasn't enough but the last couple of weeks, 1 sachet has been more than enough!!
We were advised pineapple juice for the choking as it is thicker and acidic enough to break throuh and also gives fruit to help with constipation. xx
me too, so very hard going isnt it , brian used to love his food but didnt like gravy found that very hard , trying to to find something soft enough .yoghurts, trifles and little chocolate desserts went down very well and thick milk shakes . he once referred to me as her in the back when we were in the car with my daughter.very sad ,something keeps us going ,think its love and strength . take care snd lots of hugs .linda
It’s hard to find something as there are very few things that he doesn’t struggle with. I give him what I cook for me but just cut it up really small and don’t expect him to eat a lot but then give him yoghurts, cream cakes, ice cream and chocolate through the day as his weight loss worries me xx
i know , yes brian loved ice cream ive got a couple of lovely photos of him eating one at the coast . would do him an omelette sometimes in the same pan as id cooked myself a fry up so that he still got the flavour . take care x
I am at this exact stage with my PSP husband. I know exactly what you are experiencing! Hang in there and be strong...I know it is so hard to do sometimes.
This is the natural progression unfortunately. Keep him hydrated and give him ice cream. Anything to make him comfortable. You’re doing a great job. But it’s so hard.
Cuttercat
Know how you feel. Caregivers struggle to give good quality of life to those whom they care for, and then an incident like the one with the grandchildren makes you wonder just what the experience is like for them since their ability to take in, process and retain experiences is so limited. A week ago, my husband (13th year, CBD) asked me if his brother, living and in contact with him, is still alive. On Sunday, I worked hard to get him, in his power chair, to the movies to have an afternoon like "the old days." I looked forward to talking with him about the movie on the way home, but by the time the movie ended, he could not remember most of it. My heart just aches for him and when I think about the "unfairness" of this happening to a good man like him, I am overwhelmed with sorrow.
Marilyn
I just wanted to say, my husband has been with CBD for almost 12 years, we have to hoist him now and in March he had a peg fitted, as he was in hospital for 10 days nil by mouth because of choking episodes, as he had already been referred for the peg he was kept in until the small op could be scheduled, by then he was 8 stone, he was weighed on Monday and is now 12 stone.
He is so much better in himself now, communicates more and his skin is a great deal better, it solved the constipation too as his feed is with added fibre, for me it has removed the stress of trying to make him eat and drink constantly.
I know some people don’t like the idea of a peg, but our gp was very good at explaining the pros and cons, we are now trialling him having small sips of pineapple juice, which is going well and it helps with the secretions that build up on the chest.
Something to think about and good luck, I know how hard it is, but if it helps I’ll give anything a try.
On a different note, the most disgusting thing for me is to clear his nose, as he can’t blow it, and my carer has told me about a little sucker you can get from the chemist,on the baby section, so I’ll be going there today 😘
Janet
My husband has PSP. Is CBD very similar, please excuse my ignorance x
I have only just read your post properly as I have been away on holiday in Switzerland but my heart goes out to you and Craig. I completely understand what you are going through. I will private message you as I think it’s tome we met up somehow and I can share a little of what I found worked for Steve and how I coped with what you are going through and I would love to buy you a coffee so you get a break. Sending you lots of hugs Sarahxxx
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