Bad weekend

[blackcushion]

Very trying weekend with mum I know mum can't help it and it breaks my heart to see her like this refusing food and will only eat puddings, arms have gone really stiff and makes terrible noises the not knowing how long this will go on for is hard as I don't want to see my mum suffer anymore x

[clauitur]

Dear Blackcusion,

So sorry to hear about your hard weekend and I totally get it. My mom is in hospice at the house and one of her worst PSP symptoms is the terrible terrible stiffness, it truly is heartbreaking. At moments it's as she is made of stone. Because she is in hospice we have her on meds that help and don't understand how she managed before. I sure hope you get some rest and that your week is better. Best wishes.

[goldcap]

Blackcusion, I am so sorry you are having a bad weekend. Mine is not exactly spectacular either. But you are doing a good job and you will never regret the time you are giving her now. My mom (non PSP, stroke), started to refuse food. It was as if her body decided it was no longer necessary to have food anymore. I really believe in nature taking its course. Follow her lead-she will let you know where she wants to go. My mom passed so peacefully in my arms-she was not starving to death as people seem to believe. Her body just sop requiring nutrients. I want my guy with PSP to have the same experience. Take care and be strong. JG

[jimandsharynp in reply to goldcap]

Goldcap, that was very encouraging!!

[Robin20]

Your mum is probably only eating puddings because it feels softer and safer to swallow,less frightening for her,my dad made terrible noises,I used to let my dad walk with a frame,with me and my mum everyday,until it was impossible,only the length of the room,just to keep his bones going,it is so hard and cruel watching them suffer,my dad passed away Friday morning,and even though I was relieved for him,it's killing me remembering what it was like,it's a cruel journey,but I'm glad I stuck by my dad till the end,keep strong blackcushion xxx

[jimandsharynp in reply to Robin20]

Robin, I manipulate my wife's legs and arms and ankles and feet at least once a day. Ten times (bending) on each leg, arm, etc. I notice that her one shoulder and one knee will pop as I move them. I think they would freeze up without manipulation.

[jillannf6]

hi

i am so sorry that your mum si suffering so much and hope that the pain for her soon goes

it si a horriible way to watch your loved ones go

but i hope she is peaceful soon

we are all thinkign fo you on this site

lol Jill

hugs and xxxx

[NannaB]

Hi Blackcusion, I think lots of us had weekends like yours, together with 3 nights of very little sleep, I'm shattered. Are you your mum's full time carer? If you are, make sure you have time to yourself. Time out is good for you and your mum as someone else coming to sit with her can chat about different things making life more interesting for her as well. It must be so frustrating for previously active, people to be stuck in a chair most of the day, listening to what's going on but unable to join in. I make a point of telling my husband everything; recounting telephone conversations, showing him funny things I have received on Facebook etc. I also make sure everyone who calls goes straight in to say hello to him before we start talking to each other. There is often very little response but he knows everything that's going on and understands everything that's said. My husband was diagnosed in 2010 and I know we may have several more years together ( and may not) so I want to make those years as good for him as possible.

He has developed a sweet tooth in the last few years and prefers puddings to main courses but as Robin said, puds are easier to swallow. I now liquidise all meat but serve it with very soft, mashed veg like carrots, parsnips, sweet potato. He likes the sweetness of the veg. I have to feed him now. I let him eat what he wants.

Dressing him is difficult because of the stiffness but have found it easier to put arms through sleeves first from the front and then put the item over his head so he doesn't struggle to put arms in from behind.

None of us want to see our loved ones suffer and all want this to end but we can't control that so I try and make every day as good as possible, even if I'm silently screaming inside sometimes.

It's hard Blackcusion, and I hope you can get out and have fun this week as you will cope much better if you are refreshed, and you'll have something interesting to talk to your mum about.

Best wishes to both of you.

Nanna B

[carolinesimmons in reply to NannaB]

Nanna B,

It's uncanny how much your husband's situation is like mine! We do have to contend with a feeding tube, but 1 1/2 years after he got the tube, he has started eating some foods. The soft ones are his favorite and he likes the sweets, too. His daughter has found a source in CA that ships us some different items like meatloaf, steak, etc. as well as vegetables. I'm sure it is expensive and I don't know how/if it is different from just using a blender. We are in VA and the shipping has to be expensive, too. When she was visiting she made him some soft liverwurst and other "exotic" things like that. She is a baker but knows a lot about food preparation. She doesn't just grind up the food as it is, she adjusts ingredients so it tastes good. When I get the address of the CA place Iwill share it on this site.

Best wishes for you, your spouse and everyone.

Caroline Simmons

[NannaB in reply to carolinesimmons]

Hi Caroline, I look forward to reading more about this food. Of all the things I could get frustrated about with this horrible illness, the thing I get most annoyed about is washing up the blender. Crazy isn't it but I use it so much and blend food separately so it's not just a mixture of everything on the plate. I did make my husband laugh last week though....I forgot to put the lid on before switching on.

Best wishes to you and yours,

Nanna B

[jimandsharynp in reply to NannaB]

Nanna, You are so right. We had people from our church come over and although my wife didn't join in the conversation she stayed awake and took in every word. Afterward she told me she enjoyed the gathering.

[NannaB in reply to jimandsharynp]

Yes it must be so frustrating for them not being able to communicate properly. Yesterday my husband surprised us all. We had family here and my sister in law asked if I knew where Swaffham was. She was going there and wondered if it was near to where my son lives in Suffolk. I said I didn't but my husband said, "The Rifle man". He couldn't explain what he meant so I googled it and found there is a memorial at Swaffham to soldiers in the rifle brigade who died in the war. He then repeated several times Csilla ( pronounced chiller) the name of his night nurse. I couldn't get the connection until he said, "pub". I then realised what he meant. 45 years ago he was a refrigeration engineer and fitted a wine or beer chiller in The Rifleman Pub at Swaffham. We all felt a great sense of achievement when I finally "got it" and my husband laughed and applauded. It was the highlight of our Easter Sunday.

May God bless you both with His peace.

Nanna B

[goldcap in reply to NannaB]

Nanna, what a cool thing to have happen! Kudos to you for taking the time to figure it out. Now, I think, he will be more apt to make the effort to communicate knowing his loved ones will make the effort to really listen and understand. Glad you had a joyous Easter! Take care, Jayne G.

[jimandsharynp in reply to NannaB]

wonderful story and very inspirational to us all.

[Peter3]

Hi Blackcushion,

All of what NannaB says is true. When holidays like this come around I think caring for someone with PSP becomes harder, it seems as though others are out enjoying time together whilst we are caring from someone who is difficult to communicate with, is difficult to dress, move around and feed, shouts for no apparent reason, and probably shows little gratitude. My Mum use to say, "consider it an honour to be helping others who have such needs". For me there are times when I feel the honour has gone far enough, in quieter moments I realise she was absolutely correct and it is an honour that I can care for my husband. I'm not saintly in anyway at all and wish this whole horrible journey was over. Day by day I watch my husband succumbing more and more to the ravages of PSP and hate it.

With an increase in carers coming onto the house to help, there is another dynamic that kicks into play, that of having to be even more of an advocate for my husband. Although I explain my husband fully understands what is said, and for people just give him an opportunity to respond with a thumbs up or down, they still ask me first as to what he wants to eat or drink etc. Others speak to him as though he were a two year old. This truly annoys me.

Sorry I have got into a bit of a rant.

I think we all wonder at times as to how much longer will a loved one have to suffer like this, when will life ever become a little better?

We all say keep strong, sometimes I wonder where will the strength come from but somehow it does.

May you have a better day and week.

Peter3.

Ps Puddings can be very nutritious with the right ingredients.

[Hidden]

My mum went like this in her last week, I don't think it will be long now. I hope you can manage to last, I know it's not nice. Just keep her as comfy as you can and say all the things you want to say. Take care, Dianne xxxx

[Buckeye7]

Hello Blackcushion, I so empathize with your situation. Yes, it is heart-breaking seeing your Mom suffer. I think most of us wish there was something we could do to just turn back the hands of time so they could at least do what they could a month ago or longer. With the progression of these diseases, I catch myself thinking how much.better things were when they could at least do this or that yet. I hav e to remind myself that today may be thebest my mother in law, Peg's life may be. We just need to give them the best care we can for today and help them find some kind of joy in the journey. I know that is difficult to do. There were several good comments above as how we can make life more interesting and enjoyable. One that you need is to find ways for YOU to get out and have some much needed time away, so you can return with new things to talk about an you fell at least somewhat refreshed to face the day. My prayers each day for patients and caretakers take comfort in God's eternal grace.

[jimandsharynp in reply to Buckeye7]

Buckeye, One thing I found to make my wife's life interesting is to turn on the music channel on the TV. While I'm feeding her breakfast we listen and at times when I don't recognize the artist I ask her and many times she knows who it is and tells me. Not much talking but that little bit lifts my spirits and I think hers as well. Between both of us we know the music from our era and many of the artists names.

[jimandsharynp]

Blackcushion, I feel your pain. It is the most difficult thing watching a loved one struggle. Having gone through this with my first wife I thought I'd be able to handle it better this time but it's just as difficult. Sometimes I have to leave the room and shed a few tears until I can regain my composure and return. I wish we both knew when this terrible PSP trip will end! I try to not think about anything other than the day we are in. That works if you can do it. Try not to think ahead. Blessings to you and your mom. Stay strong, your mom surely is. Jimbo

[Maggie3-11]

So sorry you had a bad weekend.

[blackcushion]

Thank you all for your replies it means so much, mum does have careers four times a day going to sort if we can have more care to feed mum when the time comes, my three brothers and I take it in turns to stay at night which I'm so lucky to have them. Love to you all as we are all on the same journey xx

[Buckeye7]

Jim, I appreciated your comment about the enjoyment your wife had with the visit of friends. Peg will many times close her eyes while friends and family visit. Sometimes I will comment to a story someone is telling, Peg do you remember that? and she almost always responds and smiles. Then we will laugh, because everyone assumes she has been sleeping. It can be such an effort just to keep her eyes open, but she loves the old stories they are telling. I also bring this up so they don't just talk among themselves or talk about Peg as if she can't hear or isn't there or leave becaue they thinkshe needs to rest.I can tell you this.....if you gave hearing a rating, like eyes.....she would be 20/20. She hears far better than I.

[shasha]

WHY WORRY ABOUT HER EATING PUDDINGS ONLY AT LEAST SHE IS EATING SOMETHING