My wonderful husband : Hi everyone Led was... - Care Community

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My wonderful husband

Baileyboo
Baileyboo

Hi everyone

Led was buried on Friday 15th. The service and internment were beautiful- if that is a word to use - regarding such an occasion. It was very personal to Les and how much he was loved by his family.

Now I have to try to continue my life without him.

I have never felt so alone as I do now. I am no longer part of a couple, I am just me. I am sure others must have felt this way. After 41 years of marriage and a further 2 years before we married making 43 years of loving the man I buried.

I must sound very selfish but I miss being able to get a cuddle from the person who was my world. I don't want him back to suffer this vile disease but as he was prior to PSP.

I am lucky in that I have family and friends. Why do I still feel so alone? Losing a partner is hard enough without watching them struggle to fight PSP.

Sorry for rambling on. Our beautiful middle granddaughter (she is 1 of 5) asked at school if she could write a Christmas card to grandpa, it read "to grandpa, Merry Christmas - I wish you were still here - lots of love Lakota". I hoped she would be able to accept that grandpa was with the angels now. Guess I am wrong about that.

Love

Pat x

49 Replies
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sassy59
sassy59Ambassador

Hello Pat, sorry for your terrible loss but dear Les is at peace now, no longer suffering.

Grief is such a personal thing and everyone, young and old, deals with it in their own way. Take each day as it comes and be glad of all the wonderful years you had together.

Wishing you better days ahead. Xxxxx

Baileyboo
Baileyboo in reply to sassy59

Thank you. I just can't see a time limit that my employer thinks there is. I feel that he is heartless. I have worked for him for 10 years and never took time off unnecessarily. I know he has a business to run but my feelings now don't appear to be his concern.

I guess life would be boring if we all lived in a world without feeling. I believe the people with the most love, care, understanding and being there for one another are on this fantastic site. We are all up against PSP but do out best to help each other. I am so grateful to everyone here for their virtual hugs and kisses. These mean the world to me and I am sure you all agree.

Lots of hugs and love to each and every one of you.

Pat x

sassy59
sassy59Ambassador in reply to Baileyboo

Love and hugs to you too. Your employer needs to think long and hard about how great you are and how lucky he is to have you working for him. Xxxxxx

princess1518
princess1518 in reply to sassy59

so sorry to hear about your loss i know what you mean wanting your husband as he was before his illness took over my husband has so many brain problems so changed but he is here cant imagine what you are going through just take each minute as it comes glad you have people to support you but you haent got what you really want sending you kind thoughts x

Thank you

Hello Baileyboo,

I am so so sorry for your loss and for the loneliness you feel.

Please accept my sincere condolences and sympathies to you.

It cannot be an easy time for you and of course you are going to miss Les, you were together a long time .But he will always be by your side and with you in spirit.

There is no time limit in which to grieve , so take as long as it takes and don't feel that you should be feeling a certain way in a certain length of time, your feelings and thoughts are yours and personal to you.

I am glad that you have your family and friends to comfort you, and what a lovely Christmas thought by your granddaughter, they too will need time to grieve for their grandpa.

Take things easy as you must be exhausted by all that you have gone through recently and the important thing to remember is that you were there for Les throughout his illness. That would have been a source of great comfort to him.

Be kind to yourself now and we will all be thinking of you and wishing you as well as you can be.

with all our sympathies to you,

best wishes and kindest regards to you

mas nurse

Baileyboo
Baileyboo in reply to MAS_Nurse

Thank you so much xx

Sending you love and strength xxx

Baileyboo
Baileyboo in reply to 1poppie1

Thank you so much xx

Hello Pat, sorry to here of your loss, and the funeral so close to Christmas. I recall that feeling myself when I lost my husband some years back. Sadly Christmas does not get any easier as years go by, however coping does get better. Allow yourself to greive , pamper yourself, at first you will have many things to cope with. Always allow yourself time to talk about your feelings we are here to listen xx

I'm sorry for your loss so hard especially at this time of year, but so aware from own experiences that it leaves such a heartache that no one can heal, but aware how the love you have will have created very special memories that no one can take away from you, treasure and celebrate these when you are able

Sorry for your loss. I too have been on that road it is a rocky road where at first the bad bits come racing ahead, but when you are ready you will find all the best bits take over and you can remember all the love and the good times the most.

There is no right or wrong to grieving you never get over it but you learn to cope with it.

Be kind to yourself, just take baby steps at your own pace

Take care

Xx

Hi pat i lost my husband 2 years ago .to cancer he was 62.it was absolutely heart breaking. I talk to him every day. I know he is with me .i know he can see me. And the family. I also would like a big cuddle.i gust take it day by day. I know one day we will be together. I know how you are feeling. God bless you

Sending my deepest sympathy to you and your family at this very sad time, take care

Baileyboo
Baileyboo in reply to Mydexter

Thank you

Pat x

Hidden
Hidden

Im so very sorry for your loss, no one can even begin to prepare you for losing someone so close and dear to yourself.

My thoughts and love are with you all..

Xxx

Thank you Lisa

Losing Les is the worst thing in the world. It is only 6 weeks since he left me and I feel so lonely. I have a son and daughter-in-law as well as my daughter Fiona who still lives at home. I am also lucky to have 5 beautiful grandchildren. I feel selfish to say I feel alone but to have someone in your life who you love with every fibre of your being after 43 years together it's so hard. I had something happen to me on 4th January and broke down completely as I couldn't get a hug from Les. He was always there and I was on my own. PSP is the most vile disease. It damages your loved one and then, just to ensure you are aware that PSP is the boss it takes them. I so want him back, pre PSP. I love this site as everyone understands this horrific journey we are taking and we try to comfort each other and just to be there to listen.

I told Les that he would just be a whisper away. At the moment I am struggling but we all are on here.

Thank you so much for your reply.

Love and hugs

Pat x

I'm so sorry for you, I can't begin to understand what your going through. My husband has been ill for so long now I can't remember when he was well any more. I offen wonder what I would do if he was n't here with me any more. My heart goes out to you, but you have friends on this site that you can leave messages to anytime. Only time ,family and friends will help You get through this period of time. Keep hold of all your memories and treasure them always.

Hi Shirley. Thanks for your reply. I know it will take a very long time to attempt my life without Les. I received a gift by post yesterday and my reaction was immediately to say to our daughter "I wonder what your dad will think of this". I was brought back to, what is normality now, and remembered he isn't here anymore. It is the most emotional rollercoaster you could ever be on.

You must try to make memories and hug your husband as you just don't know what is around each corner.

Take care and I am sending hugs and love to you both

Pat x

God bless you.

Dear Pat

I do not know why I missed your post initially or why it suddenly popped up in front of me yesterday but it hit me exactly where it hurts and took me right back to how I felt when my 1st husband died of asbetsos related cancer. I hope that a couple of months on that the pain is not as raw as it was when you wrote this post and that if it is, that you have saught help from a bereavement councellor or your GP. It is not weak to ask for help.

Your reference to your Grandaughter took me back to how our grandaughter also wrote a card to her Grandpa. Lakkota may well accept that he is happy with the angels now but it is lovely that she felt that if she wrote and told him that she missed him, somehow he would know about it.

When my husband died I would have given anything to have him back, but not suffering, as I felt that I had not only lost my husband but my very best friend. Just after he died I started writing poems about how I was feeling. I guess it was my way of releasing pain that I could not cope with. It ended up with 5 books of poems which I have sold in aid of Macmillan.

Your pain will eventually ease off and happy memories will start to take over from the painful ones. This is one of my poems. I hope that it will help. In the meantime accept all the love that you can from your family and friends as they will need to support you. x

Life

A hole.

A well of regret,

triggered by something

when I least expect.

A hurt.

A physical pain,

which fades more gently

than when it first came.

A loneliness

which can’t be redeemed,

for life has killed

the life I dreamed.

A loving memory.

A magic beam,

which gives me strength

to build new dreams.

Baileyboo
Baileyboo in reply to AliBee1

Thank you for your reply to my post.

Your poem shows how you felt deep within yourself. It is really beautiful. I am sorry you have lost 2 partners. I know asbestos related illness is difficult to treat.

Sadly I am not finding it any easier at this point in time. I find myself waking at night and reaching for Les. It is strange as I didn't do this when he was in the nursing home. My friend said it was probably that I knew where he was.

This is a hard road to navigate. I loved him so much. At some point I will hopefully find my way again.

I thought getting back to work would help. I returned on 2 January and my boss made me redundant on 4 January as I had taken time off to be with my husband. I have a solicitor looking into this. Maybe I will be able to do something about it. That occupies some of my time.

I thought my mood was low and wouldn't or couldn't get any lower. This was a time when I would have gone to Les and I had a total meltdown knowing he isn't here to share things any more.

PSP is the most vile disease and there is no way of knowing what is around each corner. It just takes over and there is nothing to stop it.

I am trying to cope but feel so bitter.

I haven't been to my doctor as I don't know what there is to help me. I don't want to pester her as I have never been someone who visits a doctor just for the sake of going. That sounds really ungrateful and I don't mean to be as I am open to any help or advice if I can discuss it without crying.

Love and hugs

Pat x

Dear Pat

I have only lost one husband through death. My current husband has a rare form of dementia so I have lost some of him but it is not the same. There is a poem somewhere inside me as someone asked me if dementia is like bereavement but I will have to work it out in my head before I put pen to paper. It will be to do with having a 'hole' inside you.

I am sorry that you are still not coping and that you are reaching for Les at night. I still did that frequently for sometime and one night I swear I smelt beetroot and cheese sandwiches being made downstairs (his favourite sandwich). I presume that you believe that there is an afterlife as you talked of angels. Maybe you feel as if he is there because he is there in spirit trying to help you. Do you talk to him? It may sound daft but maybe it would help. I certainly talked to Chris. No one is there to see you do it but I did realise that if anyone had seen, or heard me, they would probably have thought that I had lost my marbles !!

What are you bitter about, the PSP or the fact that he has died? Part of the bereavement process is feeling angry. My current husband wrote poetry too. That is how we met as my parents in law gave him my first book of poems to help him when his wife died aged 47 of ovarian cancer. He wrote a very good poem about being angry.

You would not be bothering your doctor if you went and saw her and it would not matter if you cried but she may be able to give you something to help you over the winter or to get a sleep pattern back. You would certainly not be 'bothering her for nothing'. I eventually had to admit I needed help and it did help. Loosing your job too certainly did not help. I hope your solicitor can help you. If you do not want to see your GP you could contact Cruise? They have good counsellors who could help you and would be quite used to someone crying through most of their first session.

It is still early days and it will ease off and one day you will realise that you are having happy memories not sad ones but in the meantime I beg you to seek some help.

Love and hugs

Ali

Baileyboo
Baileyboo in reply to AliBee1

Thank you for your reply Ali

I am so sorry that you are losing your husband bit by bit. That is hard. Les seemed to leave me in a similar way. He was insistent the I had a lover at one point and no matter how much I tried to explain that I didn't he couldn't grasp the fact that I didn't. I tried to make him understand that I would never do that and there was no time to spare in my day. I repeated the same conversation daily to him. PSP gradually took over his brain. Unfortunately if he had an infection of any sort it galloped ahead and there was no way to get that part back.

I am sorry if I sound angry. I don't think I am angry. I am struggling to cope with Les leaving but in no way would I be angry that he has gone. The end was horrible and I would hate to think he would have to go through that again. I am not angry just hurt that I am alone. We talked in the early days of our marriage about dying. Never thinking it would be at 62, we decided that I would leave first as I didn't want to be the one left missing him so much. It sounds silly now and I was being selfish.

Love

Pat x

Dear Pat

I only asked about you being angry as you said that you were feeling so bitter. I can quite understand that you are hurt at being left behind at a younger age than you had expected. Life can feel so cruel.

The one thing that I would say about you not leaving first is that is you had left first you could not have been there, caring for Les when he started to suffer from PSP. Although this vile disease took his brain and made him suspicious of things, before that, when he was still aware he must have been so glad of your love and support even if he could not express it.

Love Ali xx

Baileyboo
Baileyboo in reply to AliBee1

Thank you Ali

You make perfect sense. I was there when he needed me and the things he said weren't like him at all. At least I tried to reassure him.

I like to think there is another life after this one. I am pretty sure there is and I have been talking to Les the past 2 days. I believe he hears me but he didn't like pancakes and is probably chuckling at me. Although it's a day late Fiona and I enjoy them. Les would eat them as he never complained. In fact during our life together he didn't complain about much. I miss him but at some point I will be able to continue loving him and find myself again.

Thank you so much for you kindness Ali you have helped me so much.

Love and hugs

Pat x

AliBee1
AliBee1 in reply to Baileyboo

Dear Pat

How lovely to hear that you have been talking to Les and that you could imagine him chuckling at you because of the pancakes. It made me smile deep down inside.

I told you there was a poem bubbling up. Please see below.

Love and hugs and lovely happy memories.

Ali xx

Dementia and Bereavement

Dementia changes a life which becomes an ordeal.

Bereavement leaves a wound which cannot be healed.

But Love leaves a memory which no one can steal.

Dementia results in life change that becomes surreal.

Bereavement results in a hole which cannot be sealed.

But Love results in a memory which no one can steal.

Dementia steals your loved one and there is no repeal.

Bereavement takes a loved one and you have no appeal.

But Love holds your memories which no one can steal.

Baileyboo
Baileyboo in reply to AliBee1

That is so beautiful. Our daughter works in a care home near to where we live. She loves her job and helping to improve anything she can for the residents. Les and I are so proud of her. She works with residents who have dementia and more than anything else she talks to and takes time to try to understand them. Some even laugh at times and it makes me almost burst with pride when she comes in after a 13 hour shift and days she has enjoyed her day. She can't give any detail as it would be breach of confidentiality but she plays music and just improves their day.

Thank you for sending the poem. I will show it to Fiona.

Love

Pat x

Dear Pat

It was lovely to hear about Fiona. She sounds like a lovely lady and you have every right to be very proud of her. After the next papragraph I will add in my poem about dementia that she may like.

In the meantime I just want to say a huge thank you to you. I wanted to find ot more about PSP because of you and when I did I found that the CBD from which my husband suffers is very closely related to PSP and that there is a website and a community on Health Unlocked. It has been very lonely up till now because I knew no one else with it and even the consultants at the hospital had not encountered it. I feel as if I have been thrown a lifeline because of my contact with you so thank you again. xx

Dementia Care

Caring for one with dementia is a lonely affair

because of ‘you as a person’ they’re no longer aware.

They’re living their life in their own little bubble,

unaware you have needs, and might need a cuddle.

It’s not that they’re selfish but they’re very self-centred

as their view of living has become very blinkered.

But, when you’re not in sight they’ll become quite bombastic,

it’s as if you’re attached to a piece of elastic,

and if you cannot comply with what they are needing

you can be accused of being unfeeling.

They lose all awareness of the concept of time

so can live in the past, or repeat the same sentence time after time,

and if they want lunch in the middle of night

you cannot convince them that the time isn’t right.

There are times when you can’t understand what they’re seeing,

that they’re not where they are, or ‘there’s a cat on the ceiling’,

and if you don’t understand, they can say something hurtful,

and you want to walk out as it’s all far too stressful,

but you cannot do that: you have to stay calm

to act for you both as the steadying arm.

You take on the money; the cooking; the care

so there’s no time for the ‘you’ that’s hiding in there.

BUT, having said all these things, it can also be sunny

when they suddenly smile, or do something funny.

Baileyboo
Baileyboo in reply to AliBee1

Hi AliBee1

There is no reason to thank me I found this website and I am so grateful that I did. The folk on here are so supportive and caring. I am pleased that you no longer feel alone. There are so many on this site that can help with most things and I gained so much from them and will be eternally grateful for their support and kindness.

Your poem is beautiful. I read it to my 14 year old granddaughter and she was very moved by it. Fiona would like to take it into work. I think it would be nice if it was in a frame and placed where people can see it. Just a thought that it could inspire carers and families to think more kindly of the residents.

Love and hugs to you

Pat x

AliBee1
AliBee1 in reply to Baileyboo

Hi Pat

I would be very happy if Fiona did that with the poem. We certainly need to look behind the facade that we are being presented with as that is not the real person and it would be lovely if carers and families could gain something like that from the poem. xx

I had a call today from the UK PSP helpline so even more information coming my way. It was so good to talk to someone who really knew what I was talking about.

Love and hugs

Ali B

Baileyboo
Baileyboo in reply to AliBee1

Fiona has copied it into her diary. Sadly she has had a meltdown missing her dad and isn't at work this week. Fiona was Les's main carer for 3 years and I took over after work. I am not much use to her and just listen to her in the hope that she will feel better.

The main thing she struggles with is that dad is cold and so alone since he was buried. Les didn't want to be cremated but in following his wishes, I have caused Fiona more pain.

Hopefully she will feel more able to go back to work soon.

Love

Pat x

AliBee1
AliBee1 in reply to Baileyboo

Dear Pat

I am sorry to hear that Fiona is feeling like that. You must not feel guilty that you followed Les's wishes. You could not have explained it to him if you had not, whereas you can expalin it to Fiona. Can you convince her that although his body is in the ground he is not inside it so he is not cold and alone. I remember my Gran dying many many years ago. She was a cockney and was a wonderful character and she was worrying about us all right up to the end. When we were in that Church I just looked at the coffin and thought 'There is absolutely no way that she is in there'. 'Her spirit is out here in the church making sure we are all ok and sitting with someone who can give us support'.

It must be very hard for her being without him when she was his main carer and cannot now 'make him feel better'. She has to hang on to the fact that she did so much for him when he was alive and that is what his spirt will be remembering.

Big hugs to you both

Ali B xx

When I’m gone

My life on earth is going to an end:

for my body is poorly and will not mend.

Come and see me – say ‘hello’.

I won’t hear your greeting when I’m gone.

I love to sit in the garden with the flowers and bees:

is this is how heaven is likely to be?

Come and see me – bring me some flowers.

I won’t see their beauty when I’m gone.

I love to talk, recalling the past:

I love to smile when my strength doesn’t last.

Come and see me – have a laugh.

I can’t laugh with you when I’m gone.

Don’t be afraid of me because I’m dying:

I’ll hold your hand if you start crying.

Come and see me – give me a hug.

I won’t be there for a hug when I’m gone.

Baileyboo
Baileyboo in reply to AliBee1

Hi Ali B

It's certainly tough. I told her at the hospital that it was just Les' body he had left us during Monday. Yes dad was there in the bed and I hugged him and told him it was okay to go (it wasn't really) but he was still suffering but his spirit had left.

I need him today for a cuddle. I have pneumonia and the dr said my immune system has crashed. I feel so low and don't know how to help Fiona. Apart from what I have done already. Grieving is so hard without feeling lousy. This is when Les would have hugged me and been here for me. He probably is but I am not feeling it. He will hate this too as he can't come back to reassure Fiona and she has put up shutters that I can't get through.

Perhaps after this week we could feel a bit better. It seems to be "see what tomorrow brings". I know it will be the same but perhaps we might find something to laugh at and that usually makes a good day.

I can't fight to find reasons any more it's too hard and I never give up usually. I just don't know what to do.

PSP leaves the most horrible memories and leaves us empty.

I need to find my positive head tomorrow.

Love and hugs

Pat x

AliBee1
AliBee1 in reply to Baileyboo

Dear Pat

I am so sorry to hear that you are so unwell. You sound as if you have a very wise doctor who looks at the bigger picture.

I don't know if you know the Serenity Prayer but it says 'God grant me the serenity to accept the things I cannot change, Courage to change the things I can and Wisdom to know the difference.' Right now you have to concentrate on you and looking after yourself so that you get better. For a little while try not to worry about Fiona. Her shutters will come down when they are ready to do so. You cannot get through them until she wants to let them down and as long as she knows you love her they will come down. They are just protecting her at the moment.

Grieving is very painful and it is really horrid and it hurts. It is asking too much of yourself to be strong and hopeful for the future all the time. I promise it will ease off and the horrible PSP memories will fade, although not be forgotten. One Day at a Time is a good way to live right now although at present it may need to be One Hour at a Time instead. Try and concentrate on something lovely such as new spring flowers shooting their heads out into the cold weather or something that will make you smile.

I know that a virtual hug from me cannot even compare to one from Les but I am sending one anyway and will be sending one every hour in my mind. I hope that Lakota can give you a proper hug or one of your other wonderful grandchildren.

Love and hugs

Ali B

Baileyboo
Baileyboo in reply to AliBee1

Thank you so much Ali B. A virtual hug is good so thank you for that too.

Fiona has come out of her bedroom this morning. Only for a short time but it's something. I am surrounded by my cats this morning, my son tells me it's because I am a witch. I don't believe that they just know when I need company.

Thankfully I am feeling a little better today so my antibiotics are kicking in. I am going to take time to recover from this. I have little choice as I feel weakened by it. Self pity is something I have little time for but on this occasion I need to take time.

I don't usually moan about myself and what is happening to me. On this occasion I need to take time out.

You are so right about the spring flowers they are poking through and they are beautiful. We have had a hard frost overnight so they are braver than me to keep going and not retreating back to bulbs. The sun is shining and it's a lovely day.

I am sorry my message was all about my life when you are going through a tough time too. The quote you sent is true but it's a lot to ask from one person.

Thank you for your reply and advice.

Love and hugs

Pat x

AliBee1
AliBee1 in reply to Baileyboo

Hi Pat

No need for 'Sorry'. It helps me to take me out of myself if I am thinking of someone else. Nigel has a UTI at present so we had had a funny night with him hallucinating that there were little old ladies jumping on him. He was very glad when I told them very firmly to go away !! (CBD has a Lewy Body element). His antibiotics have kicked in today and he is not now so confused thankgoodness.

I am glad you are feeling a bit better today. Good for you being a bit self centred. It is not self pity.

You sound as if you have a lovely family. Suggesting you are a witch is the sort of daft comment my lot would throw at me !! I am sure cats are very empathic. Chris died at home in the hall and our cat lay on that spot all the time he was in the house from the day Chris died to the day of his funeral. We now have a lovely little female cat who thinks Nigel's lack of mobility is wonderful as she has a lap to sit on most of the day!

Virtual hugs still being sent. Love Ali B xx

Baileyboo
Baileyboo in reply to AliBee1

Hi, UTIs are weird in the way they cause dillusion. I hated it when Les had them as I had to tell the nursing home to check his urine for me. I don't understand why I had to tell them as it was their job. Les was a very quiet man and wouldn't bother anybody. They said he was so easy to care for as he never asked for anything. The 14 months he was there they did so little for him. Thankfully Fiona and I were not so quiet. It cost a fortune for the care he didn't get. I feel very bitter.

On 24th September Les broke his little finger. When I arrived to take him out he was in the office while they tried to work out what had caused. At the hospital we sat talking about it and he explained it very clearly to me. To cut a long story short they had to arrange for him to go to another hospital on the next day. As I couldn't go with him a care assistant went. I felt guilty but my boss was not very understanding. When I went in that evening I asked them to reschedule his appt at the chest clinic as I felt he had had enough. This resulted in me being lectured by the deputy manager saying he had to go. So the appt stood. Les was given a cough assist to use every morning to help move some of the secretions from his chest. After my lecture and the hospital visit the cough assist was used only when Sarah Jane was on shift as she was shown by the hospital how to use. This equipment was very good and had it been used he probably wouldn't have contracted a chest infection. On the 22nd October the home rang me to say would I not take him out as planned because his chest seemed congested. I asked the head carer to use the equipment but she said she didn't know how to use it. As Sarah Jane was coming in at 2 pm she was going to ask her to do it. I told her to go to Les and he would show her.

The next day he was admitted to hospital with pneumonia. The consultant said had the equipment been used as prescribed it may not have become so serious. Unfortunately he also had sepsis from an injury caused by the splint on his little finger. They hadn't noticed it was rubbing the skin on his ring finger which meant they had not washed his hand in the week he had it bandaged. It's too long to tell this but I took Les back to the hospital 6 days after it had been dressed and they were so concerned they thought it may have damaged the bone on his ring finger. I had told the lead carer that Les had pulled the bandage from between his fingers on 25th September. This could have been prevented had they washed his hand for the 4 days the dressing had been in place. Hygiene was obviously not followed stringently enough.

Ali B I apologise for giving you this rant. I would have possibly had Les a little longer. I would have still lost him and I didn't like watching him suffer but the home didn't do much caring.

I hope you have had a good day with Nigel.

Love and hugs to you both

Pat xx

PS: Fiona has sat chatting to me this afternoon not about anything special but chatting so that is a good sign

Morning Pat

We had a deep frost this morning but now the sun is shining which always makes things better.

I quite understand your rant. I think you have every right to be angry at the lack of care that Les received. In the UK we have something called CQC (Care Quality Commission) who monitor care in homes and other services provided. They give ratings to homes and one can advise them of poor quality care. Do you have anything like that? If you have you could tell them what happened even though it is too late now for Les, but it may make you feel better and it may stop it happening again to someone else.

I am so glad that Fiona is coming out of her crysalis. Your lovely daughter will soon be a beautiful butterfly again.

I hope that you too are feeling a bit better.

It is my sister's birthday today so we are planning to meet up with her and her husband for lunch at a halfway point so I am letting Nigel sleep in his recliner all morning till it is nearly time to go out so that he can cope with getting into the car and sitting at a table in his wheelchair for an hour.

Love and hugs

Ali B

ps. I am really appreciating our chats. Thank you xx

Baileyboo
Baileyboo in reply to AliBee1

Good morning

The weather up here is good too.

I live close to Newcastle upon Tyne and I did inform the CQC and they did very little. I know that they are no longer stearing people towards the home.

I think I found my angry last night.

I am feeling much better today thank you. I won't be killed into thinking I am better completely. Fiona is still sleeping and seemed happy talking to her friend on her mobile last night. Today has s positive feel.

I hope you have a lovely lunch with your sister. I hope Nigel enjoys being out too. There is only a slight breeze here. The sun does make things look better and without the wind and lots of layers of clothing it's good to get out.

I enjoy our chats too. It is nice speaking to someone in a slightly similar position and I appreciate the virtual hugs.

Have a good day and take care.

Love and hugs to you both

Pat xx

Hi Pat

Don't know why I thought that you were in Canada !! Hope you are not snowed under.

Life has been a bit difficult last few days due to Nigel's UTI. When they got the path results back today it turns out today that the antibiotics he was put on on Thursday evening are not the right ones so started the correct ones few minutes ago so just keeping everything crossed that things will start to get better now with less hallucinations and rigidity. Nigel has CBD not PSP.

Hope you are feeling better

Love Ali B x

Baileyboo
Baileyboo in reply to AliBee1

Hi Ali B

I hope the right antibiotics kick in quickly for Nigel. Both of you in fact as it's tricky with these.

I am feeling a lot better thank you but popped into town today to get a couple of things and my legs feel like jelly. I didn't walk very far either.

We have had flurries of snow today but as yet nothing too bad. I am approximately 1 mile from the beach and I believe we are going to get quite bad snow. I will wait to see what we have in the morning. It usually doesn't lie because of the salt air so perhaps we will see some. I, for some stupid reason, love snow. I will probably be checking throughout the night. Sadly I am disappointed when we are promised snow and it doesn't arrive.

Love and hugs to you both

Pat xx

Hi Pat

Nigel seems slightly better today so I am keeping everything crossed.

Your comment about looking at the snow made me laugh - snap !! Although I do not want it this week as our road is impossible after snow as it is on a steep hill with bends and not a major road so not treated and we are supposed to be going on a Respite holiday on Saturday which I really need.

Anyway 'snap' bit - Poem follpowing. Thanks for a lovely memory xx

Last Christmas

I remember last Christmas, when I woke at dawn

and looked out of the window at a snow-covered lawn.

I woke up Chris with a shout of glee:

I wanted to wake him so that he could see.

He looked at his watch and said I was mad,

but got up to look – which cannot be bad!

And now that that cannot happen again

I have to hang on to that time in my brain,

For it’s those sort of memories, that belong to the past:

I’ve got to hang on to, to make them last

Hope you and family are ok and not still snowed in. Guess you did get your snow in the end. We got snowed in but our wonderful neighbours dug the snow out of the road so we could get to our respite holiday 18 hours late, which us where we are now. Xx

Baileyboo
Baileyboo in reply to AliBee1

Hi AliBee1

Yes we did get bad snow which is unusual for the coast and I am pleased it has gone now as I was getting bored.

We are all fine thank you.

I am pleased you managed to get to your respite care. This is incrediblyimportant for you both.

I have been looking on here each day as I am under the impression that Cuttercat was losing her husband last week. I don't want to ask her as it is a horrendous time and I may be wrong. This is a tough site.

It's lovely to hear from you and enjoy your respite break.

Love and hugs to you both

Pat xx

AliBee1
AliBee1 in reply to Baileyboo

Hi Pat. Lovely to be here. Like taking a heavy rucksack off my back when we got here. Nigel had a bad choking fit at lunchtime but nurses and carers here so not as scarey.

There were 2 deaths but I do not recollect one being Cuttercat.

Could you not find one from her and just ask how she is or how things are going?

Ali B 💙

Baileyboo
Baileyboo in reply to AliBee1

Good thinking I'll try that and see. It sounded so like Les and my heart went out to whoever it was. We get to know some lovely people on this site. As most of us are going through similar things it's heart breaking. We all are a part of a very big almost-family and feel the hurt for each other.

I will take a look. I hate knowing somebody is going through the same as I did. It's probably inevitable but I feel their pain.

Love

Pat x

Pat,i feel your unbridled grief,and when we lose a loving partner of many years,it becomes very hard to carry on,as its in those quite times when you can feel very much alone,even though one has friends and family,they dont always understand how harrowing the loss is.

it is slow but purposeful steps you must take,some of those steps may falter,and some steps will make you determined to succeed.

Right now your pain is very raw,it will get easier,but it will take time,and of course the pain never entirely goes away,and nor would you want it to.

I have questioned my faith on many occasions ,but its still there,as I do believe in a greater power,and we will be reunited with our loved ones,and you must remember that Les is only a whisper away.x

Baileyboo
Baileyboo in reply to secrets22

Hi

I used those very words on this forum. I know Les is only a whisper away as I talk to him every day.

I loved him for 44 years and we had been married 41.1/2 of those. I honestly can't see this grief becoming any easier. I feel pain each day and I still love him every day. I was asked yesterday if he had been a good husband, my reply was yes, we had ups and downs as most couples do but my love for him never faded.

I admit this struggle is incredibly hard. I do feel alone even though I was with m6 daughter at a classic car show. I was lost even though most of my daughter's friends are single and ranging in age. I borrowed a baby from a friend and pushed her along. It helped a little but I was pleased to come home. Fiona knows I am struggling, as is she, it's so painful losing someone from PSP it's such a vile disease. To watch someone you love suffering and knowing they are dying is a memory that stays. I would give the world just to see him one more time.

I had a complete meltdown on Thursday last week. I didn't want to go on. That doesn't make me weak in any way but it was frightening. Fortunately my friend lives across the road and she came over. This road doesn't get any easier.

I will do my best to plod on, as that is all I am doing.

Thank you for your reply.

Pat

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