Advice for mum please or as a wife caring for your husband with psp

Today mum has been very upset/stressed and sudden realisation of how shit it all is! Today is the FIRST day mum has blended dads food, because he is having difficulty swallowing! Mum is slowly (actually in my mind) quite quickly losing the man she married 49 years ago! She is having to do everything you've all done, within the home, that dad has always taken care of! She is slightly panic stricken at it all and the emotions are coming thick and fast! I'm having a brave day without tears (this is probably difficult for mum to understand) me not crying when she is?! My mum is my best friend, always has been and I need to support her and help through this! So please, any words of advice to my mummy greatly appreciated x

31 Replies

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  • Amanda I really don't know how to advise you I'm sorry, but me being a PSP wife I really don't know what to say, I don't know myself how I think any more! I've just left Keith who is being particularly irritable tonight after a five hour visit, he told me his Dad had been to see him today (bearing in mind he died 30 years ago) and that it wasn't safe for me to visit him because of the risk of asbestosis (a risk in the place he used to work!) when I was about to leave he decided his new pyjamas were uncomfortable and wanted me to change them and then threatened me with "as soon as you've gone I'll try to get put of bed! Talk about a nightmare situation this one is really the pits!

    Hope you manage to sort this one but somehow I doubt it, don't ask me why or I might flip!

    Love and hugs...,Pat xx

  • Aww Pat, what a nightmare (again) I'm inclined to think when their loved ones that have passed visit, it's the sign of angels (am I actually mad? Probably yes)!! And I truly believe Psp is very closely associated with Alzheimer's hence the pj's, I think Psp obviously affects the brain and once they get something in their mind they won't let go, god love em! As for you my darling, after 5 hours I should think you need a bloody good rest and a glass of wine! Chill darling chill. Hugs x

  • I am doing Amanda, I am!...xx

  • 🍷 💋

  • Sorry you've had a tough day with Keith, hope tomorrow is a better one. Love from Nanny857xx

  • 😘😘😘

  • I like Satt2015's answer to you . However if your husband does not have alzheimers, you might want to tell him what will happen if he does this or that. My husband does not threaten me , but does not know how to complete things or solve problems and that is very much a PSP thing. He has "forgotten how to pee (got a catheter); how to blink (I told him if you have to, make a conscious effort, count 12 seconds and blink again); how to make sounds or better yet, talk. It's not alzheimers its the impairment to solve problems. Your husband may need to be reminded of how to do it and consequences thereof....I am sure though part of your 'nightmare situation' was doing just that!...Pat I thought I had a great answer for you and upon reading itr it's sort of jibberish.....but I'm sending it anyway. I want you t know that I'm thinking about you.....and sometimes it just helps me figure out what I need to do.....I do hope when tomorrow is better make sure you get rest tonight.

    ((HUGS))

    AVB

  • Amanda I think you are doing a marvellous job in the way you are supporting your mum and looking after your dad. Continue to let her know you are there for her and when the carers are taking care of your dad, try to take time out together for a coffee/ lunch/ a walk just to bring a little normality into her life. Lots of love, Nanny857xx

  • Thx nanny

    Your kind words/advice are appreciated x

  • Awe thx you nanny857 x

  • Is she on this site? This may be a good place for her to come too! There is no good answer. A woman starting to do it all by herself as well as coming into the realization that she has to help her husband be as safe and comfortable as possible? No easy way my darling, no easy way.

    Love you guys

    AVB

  • Bless you thx u AVB x

  • I think the very best help for your mum is you being there for her. Give her the support she needs and the shoulder to cry on. I know it is difficult for you to see but your support is more help than you know. I'm glad you are there for your folks.

  • Thx you x

  • I don't know how to advise you to help your mum come to terms with being the 'man of the house' as well as loosing your Dad bit by bit, I'm struggling with that one myself, and I've always been very hands on with DIY, finances and organising tradesmen etc, but not having the support of your partner plus having to deal with care needs is just toooooo much to cope with, enough to tip a saint over the edge

    You are giving your Mum so much support, there's probably a few PSP wives here who wish they had a daughter doing half what you do, I can't see that you can do anymore, maybe find out what household chores are bothering your mum and take those on if you can. Would it help if your mum had an interest outside the home, that's a lifeline for me, I like crafting and I belong to a card making group and a sugar craft group, they a not huge commitments time wise, but I look forward to going, and it's something I can also do at home, which is therapeutic!

    Lots of Love

    Debbie xxxx

  • Thx you Debbie

    I do loads round the house plus all the shopping and dealing with all the medical professionals

    I think mum needs to get back more into enjoying the respite, it's slipped lately and we haven't been out, next week we will!! X

  • Hi Amanda, it's never feels real. Just recovered from another tearful bout. Wishing Steve would get up and have a good old moan, about us fussing around him and being neurotic.

    As to what you can do to help. What you have been doing, My Love! Being there, taking the strain. I haven't done a thing since Saturday. Either my daughter or sister are in charge. Karen, being an End of Life specialist, is in total charge of all the DN's coming in and out and the carers. Her partner and Steve's daughter's partner have been doing all the cooking and opening of wine.

    As to blending food, get on-line and order food from Wiltshire Farm Foods. They deliver, it's not bad and so, so easy. Save your energy, from cooking and blending, to feeding your Dad. I got them in the day my sister said my kitchen was like a science lab!

    Lots of love

    Anne

  • My 93 year old Mum has had Wilpshire Farm Foods delivered for the past three years, can highly recommend them! Thank you Heady, will make a note for the future, that's a really good idea especially as I hate cooking!

  • Bless you thx Heady! Your gonna have lots of tears!! I'm thinking of you all the time, can't get you both off my mind!! Psp is simply hateful shit!!!!!

    I'm gonna look at Wiltshire farm foods now!

    Big cuddles x

  • Heady I've just looked at the food, it looks rank lol! I am fussy with food! Have you tried it? Does it taste alright to your palette? But to be fair what my mum is blending looks rank too!! I suppose blended food can't let ok too appetising?! X

  • Meant can't look too appetising x

  • The food is pureed, then piped onto the dish. Somehow, they make the food, look like its meant too. I.e. Carrots are carrot shaped. Peas, do look like a pile of peas. I did taste everything. OK, very bland, I did put a lot of salt and pepper on, but Steve's taste buds, haven't been able to take much for a long time. His favourite was the white fish in a creamy sauce. I didn't like the beef dishes much, but the chicken ones were fine. One thing that didn't work, was their Petite range. No gravy with the food.

    Lots of love

    Heady

  • Thx heady I've ordered a brochure

    That's pretty clever how they make the food look so real (if you get me)?! X

  • The first time I blended a complete meal for Jon I thought it looked disgusting and so unappetising. But he not only loves it but finishes in the same time as me not an hour or so later. He doesn't seem to look at his plate anyway so I've given up blending each constituent separately so the dish can look nice. It simply doesn't matter to him.

    Pleased to learn of WFFoods. I'll give it a go when back from our trip to Tasmania.

    And you sound as though you're doing all you can to support your mum. Good on you.

  • I've realised that, as Chris can't see well, the appearance doesn't matter to him. He does like things well seasoned though.

    Jean x

  • Your mother is so lucky to have your support, Amanda.

    Getting used to having to do everything is hard. Losing our partners gradually is the pits. There's no easy way. You are already doing so much, bless you.

    Love, Jean x

  • Thx you Jean! Hugs x

  • I've just read your post, having returned from my parents' house. We're SO in the same boat! My mum was really upset today because dad had said he wanted to go to the loo, then proceeded to poo all the way there, then as she sat him on the loo, he peed up in the air , all over her and the floor! He has no hospice respite for two weeks and she's really struggling. I took them out to a pub next to a canal junction and we watched the boats, and pushed dad along the towpath in the wheelchair, and we all came home laughing. There is nothing more we can do, but be there. It's so hard x

  • Aww sasmock I've so been there! Total hell! The pub outing sounds lovely x

  • A brave day does not mean you dont cry. A brave day is facing this head on, which you do all the time.

    I hope you have extra care to help out your mom, this can get overwhelming quite quickly.

    Being there for your mom is the nest thing you can do, and cring together doesnt mean failure, it means you both care with all your hearts

    Praying for better days

    Paola

  • Thx you Paola x

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