Tme standing still

[Kmacgamwell]

Struggling tonight looking back a the day... same as the one before. Not looking forward to the end... just wondering if it ever will.

[easterncedar]

I know how you feel, truly. You aren't alone. It does end, of course, but it's impossible to know that when you are in the middle of the fight that is taking everything you've got. Hugs and sympathy. Hang on. Love, ec

[Kmacgamwell in reply to easterncedar]

Thanks for listening. It helps to write about it.

[Katiebow]

The struggle and emotions that this disease inflicts on sufferer and carer are immense, feeling trapped even when you get respite time. I too long to get to visit friends and family who live miles away but am fearful that something would happen when away. I Ben goes on to a nursing home for respite in three weeks and I'm already get anxious about leaving him there. I wouldn't blame anyone for finally having to let the professionals step in to nurse but I'm determined to try to care for Ben myself until the end. There may come a time when I can no longer cope so never say never. Sending a big warm hug.

Kate xxx

[Kmacgamwell in reply to Katiebow]

I have a week of respite coming soon. I too am anxious.

[LuisRodicioRodicio in reply to Katiebow]

Hi Katiebow!

I feel identified with your message.

The next paragraphs are to remember that the main caregiver jobs and occupations grow at the same time as age..... without an important help it is very difficult to carry out all these activities without suffering a severe wear down.

From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least, ten days of holiday each six month are advisable.

Finally and reproducing the phrase of Anne-Heady (active participant in PSP-HealthUnlocked):

"Never forget to get plenty of rest, ask for help and most of all "ditch the guilt!"

I hope and I wish these notes are useful.

Hugs.

Luis

[Katiebow in reply to LuisRodicioRodicio]

I keep telling myself that he will be fine in the home for a week and I know that I am very protective of his dignity as he is a very proud man and worries about friends and family witnessing him having his personal needs attended to. I also have this horrible nag at the back of my mind that he had a difficult childhood and feel he deserves to have a more loving end to his life. I realise I should listen to Heady's advise but that feeling just won't leave me and I find it more stressful than caring for him. I am my mothers daughter and she was just the same with my Father when he was ill. Are there any guilt pills I could take to get rid of these emotions! He is going to a different nursing home this time and I have been reassured that the nursing care is a notch up from most local homes, maybe I will feel differently if I see he has had kind and loving care, fingers crossed.

Thanks for the post and I am hoping that I will feel more confid not in his care after the week in March.

Warm wishes

Kate xxx

[doglington in reply to Katiebow]

I really empathise, Kate. As Chris got more ill I found it more difficult to leave him. I couldn't believe anyone else would understand his needs. He fell when with me so I worried. The truth is that, however good the care , he preferred being with me. Its also true that you need a break. So you must have it !!!

Big hug from Jean xx

[Katiebow in reply to doglington]

Another double edges sword Jean, friends and professionals keep saying I must have a break but I'm not totally sure they understand the deep emotions and turmoil that you feel when you actually take that advise. Here's hoping I feel better after this break.

Much love

Kate xx

[NannaB]

Unfortunately/fortunately it will end. I survived by trying to make it so every day wasn’t the same. I had things to look forward to. Can you both get out? Not everyone with PSP wants to go out but I was fortunate that my darling wanted to right until the end. So twice a week we would go to a NT place or the coast or local park. Using a full hoist and mobility vehicle it wasn’t easy but it was well worth all the effort to keep my sanity. Before his PEG was fitted I’d take his food with me or order a jacket potato and soup and mash the soup into the potato for him. At least once a month I’d have a takeaway evening with friends. I’d invite them, they would bring the Chinese/Indian and we would share the cost. It was good for C to hear the chatter and it was good for me to hear his funny grunting laugh when something was said that amused him. There are agencies that provide sitters, Crossroads and others depending on where you live. Have you contacted them? It gives you time to meet with friends. I used my darling’s condition as a challenge, I couldn’t cure him so how could I make life better. I have a plaque hanging in my hall,

“Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain”. I did as much “dancing” as possible.

I’m in my 60’s and physically fit so I know I was in a better position than many carers but I found very early on that if I was going to survive that nightmare, I was the only one who could do anything about it. I made it my mission to improve both of our lives. So if you haven’t done so, please get help, and a few hours to do things with friends and get out of the house, with or without your loved one as much as possible. Can you ring a friend today and invite them for a coffee? Every day needn’t be the same.

Sending you a big hug.

❤️ XxxX

[AliBee1 in reply to NannaB]

I really like your repy. Thank you.

You may like to read the poem that I have relpied to Kmacgamwell.

I have the same plaque. It is lovely. I have another one that says 'When it is raining look for the rainbow. When it is dark look for the stars'

Ali B

[NannaB in reply to AliBee1]

Oh AliBee,

That hits the nail on the head. Amazing! Thank you for sharing and I hope it helps Kmacgamwell and all others who are caring for their loved ones.

XxxX

[AliBee1 in reply to NannaB]

Thank you. I do hope that it will help people.

I am very lucky to have been given the gift of being able to put my thoughts on paper.

xxx Ali B

[Megabrew88 in reply to NannaB]

Well said Bev, you’re a real inspiration!

I hope and aspire to be as tough and humorous as you, as I face the challenge of the “new normal” with my dear T.

[NannaB in reply to Megabrew88]

Thinking of you both Megabrew and praying your house will soon have everything you need for T to go home.

Lots of love

XxxX

[Megabrew88 in reply to NannaB]

Thanks NannaB it’s just frustrating waiting

[AliBee1]

Hi. I agree that it is very hard but I hope that just expressing how you are feeling on this site and the wonderful replies that you have had have helped. I hope that you will like the poem I wrote a while back on one of my 'down' days. 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.

Dementia 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 vanish, 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 ones 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.

[Katiebow in reply to AliBee1]

That totally sums it up they way things are, thanks for posting.

Love kate xx

[Kmacgamwell in reply to Katiebow]

I have decided I want him in a nursing home. My adult children want their mother back.

[Katiebow in reply to Kmacgamwell]

I'm so pleased that you have made the big decision and I'm sure it will be the right one for you. I feel so bad about not being able to be a supportive mother to our two adult sons and our two beautiful grandchildren. Which ever way you chose someone will miss out on the love and support, sometimes feels like tossing a coin but something inside me Impells me to have Ben at home. Its heart rending to have to make that choice, there is no easy answer. I wish you all well and am sure it will all work out for you all as a family.

Lots of love

Kate xxx

[Kmacgamwell in reply to Katiebow]

Understanding. Greatest support and love.

[Kmacgamwell in reply to Katiebow]

Life is strange.

Just when I decided to free myself, so is my son.

His wife is taking a job requiring them to move.

Opening a new chapter in their life.

Thank God I freed myself first.

It was a joyous celebration for all of us.

As a family now we will all breathe more freely... further apart yet closer.

I will allow myself to be in both worlds, therefore right where I want to be.

[Katiebow in reply to Kmacgamwell]

I wish you all well in a new chapter in your life where you have allowed yourself the freedom to support both your husband and son. It very much sounds the right decision for you.

Love Kate xxx

[Kmacgamwell in reply to Katiebow]

Thanks. It is the first time in a long time that I am doing a courageous thing.

[AliBee1 in reply to Katiebow]

Dear Kate

Thanks. I do hope it will help others too. It is a lonely place we find ourselves in.

Love Ali B

[raincitygirl in reply to AliBee1]

i just love your poems..!

anne g.

[Kmacgamwell]

Beautiful... I'm just so tired.

[raincitygirl]

You sound at the end of your rope K. I wish there was a way we could transfer energy and not just words to our cohort on this site. However you move forward, ..(I see you said it's time for a nursing home..) I hope the way becomes easier and clearer. I believe it isn't a pain-free route (reading Kevin and many more whose loved ones are professionally cared for) but it may allow you over time to come back from the depths. Please take care and let us know how you're doing.

Anne G. XXX

[Megabrew88]

Its good to share your thoughts and feelings and know that you have good listeners and support in this group, as I’ve found out myself recently.

Hugs

[johns65]

It has been over three months since the decision to put Jim in the nursing home was made by our son and daughter and reinforced by his VA doctor because they could see clearly that after I had a heart attack. I was not able to care for him at home Since that time I feel so relieved and have returned to "living" again. I don't tolerate drama. so I keep smiling and thanking every nurse and CNA that helps Jim with his daily care. Surprisingly, they smile back and tell us Thank You! I don't know how I did this by myself before. Just me, Joyce in Minnesota

[Kmacgamwell]

Thank you Joyce. Sending you a piece of my heart.