It's been two weeks. A new year starts tom... - PSP Association

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It's been two weeks. A new year starts tomorrow.

journeyofjoy
journeyofjoy

Hello Friends,

New Year's Eve afternoon here. Sandy has been gone two weeks as of yesterday. I am planning a church service, followed by Celebration of Life, with good food and good wine. He would like that.

This is such a confusing time. I miss him so much. I want him back. I wouldn't gripe about the caregiving this time. I wish I could shut my mind off because I keep trying to sort this out - how did this happen so fast? Yet, when I think back, we have been through so many phases of this disease. And it gave him such trouble, even years ago. He had lost so much as far as abilities. And he was a shining example of someone who appreciated the simple things in life. No matter how badly this disease treated him, he found joy and was grateful for every little good thing. Right up until the last few days when he became non-responsive.

I feel guilty because I actually l looked forward to having a new life, without the disease, and the exhausting care giving. I also knew that it would be so difficult when it actually happened. I know he is seeing Jesus face to face, and loved ones that have gone ahead. And, even if I live to be old, these next years will still fly by.

I've been surrounded by loving family and friends but now need some quiet time to myself. I'll have some of that time tonight, only I'm pretending it's not New Year's Eve.

If anyone has any tips on how to do this life, alone, after caring for someone with this damn disease, please let the rest of us know. I will seek out a grief support group and probably a therapist as well. I know I needed one months ago but never had time to make the appointment.,

Sorry to sound so melancholy. There are also good times and laughter still going on. I have our baby granddaughter who is proof that life goes on.

Love and blessings to all you warriors out there. Joy

43 Replies
oldestnewest

Such a wonderful thing to do.

Commemorate him, celebrate him and let all present share in holding him their hearts, with you.

I am not a Christian, but no matter, we share the knowing that he lives on.

So are you alone? Really? Think about that. I think you are not.

Love reaches accross all high walls and distances.

I do hope you will light a big and bright candle in the midle of the gathering so that he can, in folks imaginations, be there in symbolic bright burning Spirit.

As to how to continue?

Hold him in your heart. Keep that place where he can be close to you and talk with you. Throughout your days.

Then, with him in your heart, ask what is it that would complete your life whilst you wait to rejoin with him.

Warmly and in commiseration

Kevin

xx

Thank you, Kevin. You are right. I'm not alone. And, life is still good and I will enjoy it. We talked quite a bit about what I would do when he was gone. He wanted the best for me as I would have wanted for him.

As I have followed your posts through your journey I have been blessed by your positive approach. There is no way you should feel guilty, you have helped me and I am sure you have encouraged many others. I sang your praises when I was talking of Health unlocked at the Liverpool PSPA group meeting.

I am convinced you will continue to eliminate the negative and accentuate the positive.

As I approach the new year my whisky is poured and I am raising my glass to all you caring saints. May God bless you all.

Love. Ken.

First I got sick then a sense of relief took over when my health got a little better. I was so worn out by the end when Larry went into respite care. Eight weeks on I have very mixed emotions. The major crying I think is over. The sense of lost isn’t as bad as I thought it was going to be. It seems so very odd. Everyone experiences grief differently. I don’t have the luxury of decades to get over Larry’s death. I sort of thought I would be the last man standing and here I am. Now what? We’ll see.

I don't think any of us have decades to get over losing loved ones. And I don't really know that we get over it. It just becomes part of us, but in time, it will be easier...I hope. It makes me realize even more how quickly time is going by. Do things that you enjoy, with people you want to be with. We'll carry our grief with us no matter where we go so it might as well come along on a good adventure.

Dear Joy

Take care of yourself , there is so much to do and organise plus grief is exhausting. I have no pearls of wisdom, but your positive nature will be a big asset as you learn to live a new life

I hope 2020 will treat you kindly

Love and hugs Tippy

Joy--and Jeff--

There are people thinking about you on every holiday. How strange it must be to have them gone. But we are thinking about you. You're not alone.

Dear Joy

There are so many of us here who know, understand and have been through what you have gone through!

There is no answer fits all, no similar timeframe. In a month you will feel different. You will have sorted some feelings, others will take their place. In another month or two, you will be working out how to be alone and how to make that feel better than a big hole. I have not found that hole goes away, just that the cushion inside gets gradually a little more comfy!

Sit back and take the grieving at your pace! I went to a grief counselor because I thought it would help. It didn't! She had bright red hair, wore black, was 'well built', and half my age. I went once, cried and told her everything at length, and then came back here!

This is where you will find most support, because we know what you have been through because we have shared that journey with you! Without that knowledge counsellors tend to be a waste of time (in my opinion) - apart from talking to a pastor or church leader, who can help you deal with the feelings of loss that he understands.

Other than that, it has been said often here - DITCH THE GUILT! You have nothing to feel guilty about. You lasted the distance, gave him loving care throughout the ordeal, and made him comfy, happy and he was able to bear the pains with your help.

You began to lose him as the illness progressed and so your grief also began then as you slowly saw who he was fade to a shadow of himself. If your grief now seems shorter than you think it should be, that is 'normal'; if your grief is intense for a while, it will not stay that way for ever and it will recede, that is also 'normal'.

When you are ready, think about what you enjoy doing, particularly things you have missed, or wanted to do but never did, and join groups that are like minded. Arrange an organized trip or 2 with a tour company, to get used to being out and about as an individual. Find friends who will go to films and lunch with you, etc. Join a walking group! I find that a lovely way to exercise and relax and talk things through.

I found myself initially frightened of being alone, not in the house, but in the centre of town in the car on my own - something I was quite used to - but now had no "backup".

So there will be little things that will rock stability from time to time. Knowing this may help you get through.

Pat yourself on the back when you overcome things like that, work your way through the milestones, and the monthly anniversaries. Have quiet times if you need them.

Learn to relax!! To live for yourself! To please yourself! To do something just for you! Pamper yourself a little. Live from day to day, dont expect things to change suddenly, but looking back, you will see there are subtle changes. Mark them and move forward! That is the only way - and you are strong and determined!

Will be watching!

Big hug!

Jen XXX

Nanny857
Nanny857
in reply to honjen43

Dear Jen,

It's just over 3 weeks since Will passed away and I am in the process of getting utility bills changed into my name and bank accounts sorted. It feels awful seeing Will's name being erased from everything.

However I just wanted to let you know your reply to Joy is comforting and encouraging to me too, especially ditching the guilt. My friends and family tell me I did an amazing job looking after Will but I feel I could have done better and had more patience. But thankfully I kept telling him I loved him and best of all he to ld me me he loved me too.

So thanks again Jen.

Love

Marion xx

Jeff166
Jeff166
in reply to Nanny857

You couldn’t have done a better job. All of us pretty much gave it 110% for years. Paid care givers come in for an 8 hour shift then leave. They also leave any concerns at the door as they walk out to go on with their lives. We all lived with the anxiety and hyper alertness 24 hours a day for years.

Nanny857
Nanny857
in reply to Jeff166

Very true Jeff.. Thanks xx

Dear Marion,

My friends and family told me that I was doing an amazing job too. I know I took very good care of Sandy but I made lots of mistakes along the way. We are human. So, you did an amazing job and you couldn't have done it any better. You let your emotions come through and that is so much better than just going through the motions of caregiving.

I am sorry it hurts to see Will's name erased from everything. I can imagine how hard that is. I always liked seeing Sandy's name (his real name wasn't Sandy) on our accounts, utility bills, and everything. It was just one more thing that made us a team.

Love and Hugs, Joy

Thanks Joy, love and hugs back. Marion

honjen43
honjen43
in reply to Nanny857

Yes! That was what I found so distressing too!

Right in the middle of messages of condolence, bunches of flowers, you also have to do these other things!

The one that affected me most was the letter from Transport people, 'sorry for your loss and can we have his driver's licence back, please'!

I was sole executor and found I had no advice from lawyer. I had been in touch re POA earlier on so they must have been aware he had passed, but maybe I should have let them know! Even when I asked them what my duties were I had no real feedback! Needless to say, I changed lawyers asap! So I boxed on and learned from mistakes! Most helpful was my financial adviser. They advised IRD when I got a letter to say my love had not sent in a tax return!! He had been gone 18 months then!!

We had joint accounts most of our married life so it was not difficult to continue finances. I found the Bank styled us 'me and the "late hubby"' for a whole year after his passing as I had to finish the financial year.

Then there are those I had forgotten to advise, and the letters for him, or addressed to us both. Christmas cards a year later were not good! Especially when they had been told!

When he was sick, I had got him to put my name on various accounts, phone, power, etc. Some are extremely difficult to change without knowing the password or 'magic answer'!

Am pleased my comments above were helpful. I found my most helpful conversations were with a new acquaintance who was on the same (widow) journey.

Big hug

Jen XXX

Heady
Heady
in reply to Nanny857

Marion, nothing has to be done straight away, unless you want it to! I have only just changed my TV details and mobile phone over. That was the last, it hurt like mad, three years on.

Please ditch the guilt, as Jen has said. I know Will died on your watch, that's something none of us finds easy, but you did do your best, of course you could of done better, please name one??? Bet you can't! Of course you lost your temper at times, he was your husband, did you ever do that before PSP???? I am thinking YES! So where is this guilt coming from???

Marion, what you are suffering from is called grief, not guilt. Please start thinking of all the things you did do right, like keeping him fed, clothed, clean, safe and all the rest. Without you, he would have died, in not a very nice way, years ago. Instead he died in your arms, with you telling him you loved him. Sorry, in my book, that is a huge success. We all have to die at some stage, it's the one guarantee of life, you made Will's passing beautiful. What person could ask for more?

Sending big hug and much love

Lots of love

Anne

Nanny857
Nanny857
in reply to Heady

Anne yes you are right, I can't think of anything more I could have done for him, and yes I did lose my temper prior to PSP. So yes, I will ditch the guilt, and instead feel proud that I got to take good care of him right to the end. Thank you.

Thinking of you as you peel away that last bit. I still have the PSP leaflet with you and Steve on the front cover, lovely photo.

Sending big hugs and wishing you happiness in 2020. Marion xx

Jen,

Thank you for these words of wisdom and experience. I might be able to handle a counselor with bright red hair, wearing black, and well built...but half my age would be a big problem. I'd need someone with a lot of life experience.

I don't know that I've grieved along the way. I have seen Sandy go from being healthy to a shadow of himself, this is true. But I think I was so busy running as fast as I could to keep up with the disease that I don't know if I was grieving. It's certainly a lot different than losing someone suddenly, without warning.

I had lots of things in mind that I wanted to do once I was "free" to do them. Once I get this memorial service finished and have had some rest, I'll plan a short trip.

I am glad to hear you say that the big hole gets more cushy. That's a good description and encouraging.

Big hugs to you too.

kenh1
kenh1
in reply to journeyofjoy

I've booked my short trip. In 11 days time I fly off to Lanzarote for a week's break. I am staying in a luxurious hotel, highly recommended by my sister who is a widow and had a break there a few weeks ago and thought it would be good for me. Let you know when I get back.

Ken.

doglington
doglington
in reply to kenh1

Good luck.

Are you going on your own ?

I wait to hear. Love Jean xx

kenh1
kenh1
in reply to doglington

Yes, I am going on my own, but I am going on a package holiday so will be travelling with strangers. My sister went on her own and was very impressed by the reps of the tour company which is why she persuaded me to book the holiday.

I am taking a step into the unknown so will let you know how I get on when I come back. Love Ken xx

Nanny857
Nanny857
in reply to kenh1

Looking forward to hearing of your experience. Hope you have a relaxing time.

Lots of love Nanny857xx Ps

kenh1
kenh1
in reply to Nanny857

I arrived ok at Lanzarote. Hotel is lovely food and welcome has been marvellous. I have booked myself a couple of trips. Going this evening up the volcano which is still active😟and on Friday sailing round the island in a catamaran.

Nanny857
Nanny857
in reply to kenh1

Like the idea of sailing round the island. Sounds like you are having a wonderful busy holiday, but don't forget to relax. Take care.

Lots of love, Nanny857xx

doglington
doglington
in reply to kenh1

Sounds wonderful. Well done. Jean xxx

AliBee1
AliBee1
in reply to kenh1

Good luck. Enjoy xx

Oh Joy

It is such an odd time isn't it?

I feel I've grieved so much as PSP took hold of my darling husband. He isn't here, there's none of the bustle of carers coming and going and life is no longer governed by his routine.

His death was registered within the requisite time, just! And his service booked and wake planned so now it is just a case of waiting for the 20th January when we will finally say goodbye to him. Dying at Christmas inevitably causes delays.

We had a lovely doctor when Chris was diagnosed in 2015 who asked what I did with my time. I told him of my activities and he gave me a piece of advice which I've stuck to. Whatever you do keep on doing it, which is in part of where my mantra keep on keeping on comes from.

So my dear as we start this New Year, new decade I send you love and best wishes. You can do it and you are definitely not on your own.

Anne xx

Dearest Joy,

I can't pass on words of wisdom for your situation because Ian is still battling bravely, but I share your faith and I know that you, too, are in the everlasting arms of the Father and there is always joy and purpose ahead. Romans 8v28.

May God bless you in this new year.

Much love, Juliet. x

I have some problems with your description of guilt. It might help to reframe it as regrets. We all have those. We could never be perfect or ever-loving. This is real life ! All of us have lost it at times. I remember Chris saying " you don't really love me ". I replied through clenched teeth, as I cleaned his personal bits , " This is love. I'm choosing to be here . This is love. " Then we laughed and laughed.

Those memories help to keep a sense of perspective.

So, allow regrets but recognise you did your very best in a nightmare situation.

Like you I thought I would feel free but find it hard to adjust to single-ness !

You are doing so well and will continue to do so because you have a positive attitude.

Love Jean xx

kenh1
kenh1
in reply to doglington

As the song says 'regrets I have a few but then again to few to mention'

Your sentiments about love and loss must resonate with many of us here, it certainly does with me. I chose to spend the New Year alone with Ben's photos candle light and the music from his Farewell Celebration (and a glass of wine of course.) I'm finding this morning more sad and lonely as I think about the year ahead, can't say it fills me with much joy, it will be 2 yrs in May since he died and I still can't get past remembering him during his illness. I'm having more counselling in January to see if it can help to dispel those memories and my overriding memories will be of him before this terrible illness took its grip. I hope Sandy's funeral and life celebration is all you hope for him as its such an important part of saying goodbye. I wish you well in your journey ahead, you seem a very positive lady and that should stand you in good stead.

Sending love

Kate 😘

a very reflective post, you seem to have a great awareness of all the emotions and thoughts running through you. take care of yourself now anddo whatever seems right for you xx wishing you strength and sunrise after sunrise

The Church service sounds like an excellent idea. You will never stop missing Sandy, as it should be, but with time the pain of missing him will lessen. Never think of yourself as being alone, you have family, friends and even us to lean on as needed. Seeking out a group and/or professional to talk about what you are feeling is a positive step.

Ron

Joy, what a poignant reflection on your life right now. Sometime within the next year I expect to be where you are, as I'd have to be clueless not to see how much my husband of 52 years is deteriorating. I grieve every day because I can see how much he has lost and how different his life is from the life he had hoped for in retirement. But then, also every day, I take my cue from him and enjoy what I can about what remains of him and our life together. Like Sandy, Robert is deeply appreciative of the simple joys of life, and his outlook has made me much stronger. I think you are "doing" it just about right at this point -- your thoughts are mixed, loving and philosophical as you try to image what the "big picture" is supposed to look like. The big picture, as we are watching our loved ones suffer, is caregiving and keeping them alive and comfortable and engaged in life. What the big picture is going to look like now is anyone's guess. As so many have said, it is different for everyone. I long for a time when I won't have to watch him suffer, but know that I will miss him terribly. Really feel for Nanny857 as she hurts, watching Will's name erased from everything. My love to both of you.

Marilyn

Thanks Marilyn for your kind thoughts. I feel for you and others on this terrible journey knowing there is no good outcome.

Congratulations on 52 years of marriage, plenty of memories made I'm.sure.

Lots of love, Nanny857 xx

Dear Joy, I know this sounds like a cliche, which we all hate with a vengeance, but, this is very early days for you. I am guessing you are still in that wonderful surreal bubble. Life will, unfortunately get worse before you start to find your way. That's what family, friends and of course us, are here for. Use anyone you can. We have all felt exactly the same as you, looking forward to life again, relief when our loved ones finally depart, then the dreaded guilt, when we realise what that actually means. It's totally normal, hard I know, but try not to beat yourself up too much!

You ask for tips on how to get through. We are all individuals, the only way is YOUR way. Be that, hiding on the sofa, under a blanket, shopping until your card screams, no more! Or painting the town every colour under the rainbow. The only advise I can pass on, something my sister taught me, many years ago when she lost her husband at 30. Accept every invitation going. Nothing will make you feel better, equally, nothing can make you feel worse, one day you will be ready to start enjoying, but if you keep saying no now, the invites might not be there anymore.

My mistake was to try and force the healing process. Joined loads of groups, expecting them to be the answer, which of course, they weren't, but eventually, that horrible word, time, did kick in. I enjoy my time with the Jolly Dollies now. (A group for widows) I have been on loads of holidays, a few with specialised solo people. Even went to China, with NannaB, we had a wonderful time, most where in exactly the same place as us, even another lady, who's husband had died years ago of PSP.

One thing is for certain, life won't come and find you. Only you can find it, that will take a lot of positive attitude and gritted teeth and guaranteed, it will not be tomorrow! Sorry if that sound negative, but I know the last thing you want from us, is bull...t.

Now, three years on, I am in the process of finding love again, (I hope, looking good so far!!!) I actually met him on the trip to China. A Life is out there for you, when you are ready to join the world again.

Enjoy (if that's the right word) planning the celebration of Sandy's life. Thinking back to Steve' funeral, I was proud of what we did, it still gives me comfort today, knowing he would have approved. Since then, I have done a lot he definitely wouldn't have, equally, I know he would be so proud of how I have survived.

You can and will make Sandy very proud of you.

Sending big hug and much love

Lots of love

Anne

Tippyleaf
Tippyleaf
in reply to Heady

Dear Anne

Wise words as always, incredibly comforting and helpful - thank you

Wishing you every happiness in 2020

Love Tippy xxx

Heady
Heady
in reply to Tippyleaf

Thanks Tippy. How are you? Hope you managed the festive season as well as you could.

Sending big hug and much love, hope to see you soon.

Lots of love

Anne

Tippyleaf
Tippyleaf
in reply to Heady

Hi Heady

The dread and the thought of these special days is so much worse than the reality - which is just another day. Caught up with lots of old friends shared laughter ( and a few tears)

The last decade was all about symptoms, then diagnosis, living with PSP and this year starting to learn to live without it. Who knows what the next decade will bring for all of us - 🤞

Love Tippy xxx

Heady
Heady
in reply to Tippyleaf

Let's hope, lots of love and happiness, think we have all earnt it!!!

Lots of love

Anne

Tx for sharing. I can so relate to what you’ve written as Paul my husband passed away on 18 Dec.

Dear Joy

You have had some amazing answers. It's like having an inbuilt family who understand and I agree with Jen that I come back to this site as it is here that I get so much love and support, even if it someone replying to someone esle.

I too spent New Year alone as I came down with a rotten virus on the 28th which has still not gone, but I think I would have chosen to be alone anyway as I feel closer to Nigel here than anywhere else .

I think that memories of Sandy's joy in life will keep you afloat. It's 7 months since Nigel died and I have found recently that although I remember how awful it was for us both and how tired I was, I am remembering more and more the wonderful, laughter filled, happy times that we shared before he was ill when I was his wife and partner and companion rather than primarily his carer.

God bless. My thoughts and prayers are with you.

AliBee xx

Not easy. I went to half of grief counseling which helped. One group called cooperators caring hearts grief counseling I have issues with my leg . Well I asked for helping hand at top of second flight stairs told i liability. Never in my life so hurt besides death of hubby. I went to Lutheran chirch group kindest people out. It has helped somewhat but I do have my moments. I try to look for positive affirmations which I read daily and pray it has helped. I have friend we go for coffee several times a week. It has helped. I have been to 7 funerals since hubby passed and 3 rd in 2020. We are not alone. I have pet cat it helps. Slowly I not crying as much. I plan to go again grief counseling. It’s the being lonely hard but I getting there. I back to my music too.

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