Trying to be patient

[Westerngirl]

I know it is the illness but I find the lack of conversation drives me mad.It feels so lonely.We used to have such fun and he seems to have none left.

[honjen43]

Hi Western girl and welcome!

I know what you mean! I spent years complaining to my love (and myself!) that he was lacking in conversation. Prior to the silence he used to monopolise the conversation!

In hindsight, it was something I should have recognised, but with all other ailments he developed, it was put down to 'an effect of his medications'.

If you have a diagnosis now (I assume PSP?), you can assume (probably correctly) that it is part of the disease, and that he may be finding difficulty with some part of the conversation or speaking process.

My husband also stopped helping with household jobs, such as dinner preparation or filling/emptying the dishwasher. When I was certain in myself that there was something wrong with his brain and thought processes, I asked him why he had turned away from finishing the dishwasher emptying. He replied that he had lost track of what he had done, as he had begun filling before he had finished emptying.

So it was not the task he was avoiding, he was feeling unable to do it to his - or my - satisfaction, so stopped. And would have left without saying anything if I had not asked! The diagnosis of CBD only came 6 months later and 3 months before he died.

I hope this may explain a little what may be going on in your love's head. I think thoughts must get jumbled and are unable to be formulated clearly by him before he speaks - or he can't think of something to say - or he can't find the words, or something similar!

Hold the thought that the fun loving talkative man is still inside, trying to get out! So try and open that pathway again!

Hold on to your patience (!) and ask him questions. Wait for an answer if it is slow to come. Hold his hand! Try not to be confrontational! Be gentle!

It is well worth going along this path of understanding - as should the time come when he has little communication ability, then you have a tacit understanding and a rapport.

You will by then be his advocate and knowing how he feels will be useful to you both, as well as keeping you close.

I did not achieve this closeness with my love until I had put aside my own feelings of frustration and devoted myself to him and his wellbeing in his last year.

You may have relatively longer, and frustration and anger are bound to surface. We are well-known on this site to accept ranting and raving and understand totally why! Get it off your chest and then go back to your love with a smile when you are ready!

It may be a long difficult journey, but many here have been there and will be here to help you!

Hugs

Jen xxx

[Motts in reply to honjen43]

Jen you are so wise! Sending Hugs - Granni B

[enjoysalud in reply to honjen43]

I agree! My son at 55 died of PSP (DX from UCLA and Kaiser Permanente health insurance plan , not thro a brain autopsy). He went thro three years of a PD dx, and I couldn't understand why everyone else stabilized, but my son got worst. He got his PSP dx January 4, and died May 4th. His personality changed during those last 4 months. a few weeks before he died he forgot how to switch the TV to DVD. He said, "I can't remember".

[JCRy in reply to honjen43]

Beautifully expressed. An advocate, indeed.xx

[honjen43 in reply to JCRy]

Thank you! Wish I had known then what I know now!

[Pavaga in reply to honjen43]

Jen,

You have given an excellent answer that helps with our frustration not only as caregivers but also as wifes or husbands loosing little by little our best friend. Love, Patty

[honjen43 in reply to Pavaga]

Thank you, Patty. Passing on what I have learned will not help my husband, but I am pleased my knowledge is helping others. It also helps me come to terms with my actions when I did not understand all this!

Hugs

Jen xxx

[Katiebow]

It's one of the most difficult things of this awful disease to deal with, I hated the silence or the one way conversation. Just try to put yourself in his place, he doesn't want to be like this and most probably would love to be chatting with you, I'm guessing he feels very lonely too. It's easy not to try to chat to them when there is little or no response but so important, they need to hear the sound of your voice along with the touch, I could see in Ben!s eyes that he enjoyed hearing my voice, his face always seemed to respond even if in a very small way, it was often acknowledged with a small squeeze of the hand until the last few months.

Love Kate xx

[NannaB]

You don’t hear him speak but he hears you. My husband, after a short while with little speech, told me he answered me in his head when I asked him why he didn’t answer me. One day when a speech therapist was with C in our house, the phone rang and I answered it. I then went back to where the others were and told my husband who had called and what my brother had said. The speech therapist asked me if I always told C about phone calls. When I said, “Of course, I tell him everything “, she said I would be surprised how many folk in my position stopped talking to their loved ones.

Have you worked out other forms of communication yet. Thumbs up or down, hand squeezes etc? To offer my husband a drink I would take him the coffe jar and tea bag, juice carton etc and he would put his thumb up when I held up the one he wanted. I’d do the same with food to be liquidised. He would laugh when I took him a piece of fish or a chicken breast. We tried pictures for a while but then his brain couldn’t process what he saw. Speak to your husband as you work around him, tell him your thoughts, what’s been going on, comment on TV programs etc. In fact, speak as you always have but don’t include questions that require more than a yes/no answer.

Over the years I got so used to no response that now he has gone, I still continue to talk aloud when home alone. It’s OK. No one else hears me so

so I say what I like.

It’s up to you to make the fun now. I was lucky my husband enjoyed going out right until the end ( a huge effort but we did it). Sometimes friends and family would go with us but more often on our own but I always got into conversation with folk who were always willing to move chairs so I could get the wheelchair into a restaurant or an outdoor seating area in a National Trust property, or help when I got the wheelchair caught up in something. I used to invite friends for a takeaway. They would bring the food, we’d split the bill and after a few glasses we'd all be laughing, even C who we included in all conversations. Often he would appear asleep but then do his funny humming laugh when something funny was said and on occasions he would say a couple of words clearly astounding us all and making him laugh.

Now he has gone, it’s not his conversation I miss, it’s the touch of his hand, the sound of his sometimes erratic breathing, the humming noise he would make when I kissed him and hearing his heart beating when I sat beside him with my head on his chest.

You feel lonely and I understand that but you are not alone yet, so do try to include your loved one who is no doubt feeling very lonely.

Very best wishes and I’m sending you a hug for you to pass on to your loved one as well, a virtual group hug.

❤️ XxxX

[Westerngirl in reply to NannaB]

Thank you so much for the replies.I feel less alone knowing you really get it.I will try harder.

[NannaB in reply to Westerngirl]

❤️ 💐 XxxX

[Ratcliffe in reply to Westerngirl]

It’s not that you need to try harder, more realising and learning what is going on, and finding productive ways around it.

It is such a learning curve, caring for someone and you’ll never stop learning.

Good luck, and everyone here is here for you when you need it, never be afraid to ask anything.

Hugs

Derek

[Motts]

Dear Westerngirl

I am glad you have found this site. . . everyone here is so insightful and caring.

I classify folks here as my new best friends because they understand. Others may love us but they do not fully understand nor would I want them to. Sending Hugs - Granni B

[JCRy in reply to Motts]

I love your reply, Granni B! There is something very intimate, personal and beautiful about caring for someone. And yet there is wisdom in protecting loved ones from the agonies and heartache that go alongside it. Those things we can share here.

God bless you, lovely lady!

Juliet.xx

[Brenive]

Ivor is having more and more trouble speaking now, so I do all the talking.may be I drive him mad who knows, but yesterday he was trying to say some thing to me and I couldn't understand all of the words he said, then the phone rang , I left my pen and shopping list on the table near him , Best bit now , when I went back to the table and looked at the list.in shakey small writing he had written ( I love you ) ......so dont give up....Brenda xxx

[Marie_14 in reply to Brenive]

Oh Brenda that has brought tears to my eyes. He must have really struggled to do that. What a lovely man! Give him a big hug and one from me too! You are doing a good job.

Marie x x

[Brenive in reply to Marie_14]

Thank you . I try to keep positive, ..Brenda xxx

[AliBee1]

Hi. I wrote this a while back. I hope it will help. Love Ali B

Feeling Sorry for My Self Syndrome (FS4MS)

I’ve found a new syndrome, called FS4MS:

it can hit with a vengeance, and is hard to suppress.

Thos who are carers are often afflicted:

their inner reserves being severely restricted.

It most often hits when life’s at its hardest

and the person it hits, is not at their strongest.

The effects of this syndrome are very disruptive

as how it affects normal functioning is quite unconstructive.

It can make one want to be spoilt, and cared for, and be number one,

to stop being responsible, and go out and have fun.

It can make one desire not to ‘get out of bed’

or to open the door, and take flight instead.

Patience can varnish, and a scream erupt,

or frustration take over and tears bubble up.

However, once one’s a carer, one must be reliable

but sadly this syndrome can make one feel friable.

So it’s very important to face up to one’s feelings

for, not letting them go will prevent any healing.

Accept, that the way one is feeling is quite justifiable:

and that once one's a carer, one is very susceptible.

Accept that, there will be a degree of resentment,

and believe it’s no failure to feel discontentment.

It is sad that this syndrome can be so destructive

for once one’s a carer one must be productive.

The solution to the problem must come from within

but, being a carer it’s hard to begin,

for one’s very restricted in what one can do,

so the possible options one will need to review.

One will need to accept that there’s things one can’t change

but there will be some things, that one can rearrange.

Don’t let this syndrome control the life that is yours,

so listen to music whilst you’re doing your chores.

Go out into the garden for a breath of fresh air

or, if you have faith, you can say a prayer.

You cannot go out on your own, for a drive, or a walk,

but you can use the phone, to have a good talk;

But, if you need to be careful, or it’s the wrong time of day,

use email, or text, to let your thoughts ebb away.

Share how you’re feeling with friends you can trust:

letting go of your feelings is really a ‘must’.

Controlling this syndrome, your life will refashion,

so you can live it with love and compassion,

for the person for whom you are caring:

knowing –

that it is not their fault, it’s their burden you’re bearing.

[AJK2001 in reply to AliBee1]

How very true and so well put

[DeDeDickson in reply to AliBee1]

So so true!

[Lincoln247 in reply to AliBee1]

Thank you for your insightful writing. I’m struggling to come to terms with new husband’s diagnosis of PSP. It’s an all consuming disease that requires me to proceed with love & compassion.

[AliBee1 in reply to Lincoln247]

Good luck and big hugs. It is not an easy journeybut at least on this site you can release feelings and share and not being alone is such a lifeline. Love AliBeeXX

[Hidden]

Welcome to the site. Neither Larry nor I were ever particularly chatty. We talked every day throughout the day. His speech has gotten harder for him. He says it is tiring to talk. The physical and mental effort to do so uses up his energy quickly. I’ve been making a point of talking more. That’s not easy for me. He has told me he doesn’t feel sick. He just can’t walk or talk very easily anymore.

[Marie_14 in reply to Hidden]

Poor Larry. He has put it very well? He has also been able to let you know how he feels? Poor you too. If you are not a talker it is difficult. I have always been one so I am sure it made life easier when G was ill. However I did miss him talking to me. It is a very isolating experience. Sad but as others have said this is not about us. It's about our loved ones and helping them get through this awful condition.

Marie x x

[Javan]

I just carry on talking my usual rubbish untill I get that glance which says it all. Our telephone is always on loudspeaker so that she hears everything.

[Dickenson2]

I find it hard as well. Everyday I tell John what I have done and who I have spoken to and talk about the news and get virtually no response and he just looks the other way. If I ask him does he want to go into the garden he usually says no and then A minute later I ask him again and he says yes. He does sometimes try to tell me something but I cannot make out anything hen all if a sudden he will say a few words. Often I come away from the care home in tears but he also gets so frustrated. I am sure to him he says the correct words to me but he never starts a conversation. x

[Allan924]

I have the same thing so I just drive him mad and talk non stop

[Yoga-helps]

I feel the same x

[lilsis9]

Hi,

I totally understand what you're going through. The silence is maddening. My sister stopped trying to communicate this past week. I think she has given up or the disease is creating her silence. I have such a hard time determining which reason is the real cause. In the past, when she was mad or upset, her silence was a form of punishment.

So yes, part of the non-communication is the disease, but I believe with my sister, she has chosen not to communicate with me or anyone else. It's really sad.

Keep talking and keep trying to find different ways to communicate. Hang tough for you, like the rest of us, are a warrior against this horrific disease. Sending (((((Hugs)))))

Lil sis

[Westerngirl]

Thank you everyone.All your replies have helped this week.I have been more able to cope and stay kind.My poor guy can hardly stay awake the last few days.Seems profoundly exhausted even after a good night's sleep.