Finality

[Ratcliffe]

I don't even know if that is a word, but I'm feeling it right now.

As many of you know David died a couple of months ago, and the last two months have been hectic, the first month sorting our the funeral, and the last Month sorting out the will etc, and slowly getting my life back to some semblance of normal. (The final "new normal"?)

One thing I did was get all the medical kit like the bed and the rotunda etc etc removed. This was good because it removed the things that reminded me of Davids illness and I felt it was getting in the way of me remembering the good times.

This left the wet room, which I love anyway, so it's staying, and the through floor lift and ceiling hoists. The hoists had only been fitted a month before he died so this didn't bother me, but yesterday they were removed, so that someone else can benefit from them, and also the through floor lift was removed, and a builder came to fill the hole, and put new floorboards and ceiling in. The lift going has affected me in a strange way.

Firstly, it was the first bit of kit put in, and probably the item which was the biggest godsend, as it meant David could still go to bed every night, and come downstairs every morning. Secondly, it was the final bit of kit to be removed, which brings a sort of closure, as I have my house back to normal, apart from a bit of decoration, and some carpet. However, seeing the lift removed was sort of the final link with David apart from his possessions which are still around, and I was surprised to find I felt quite tearful as it was being dismantled.

I don't really understand that, but it was really weird. I guess it's just another step in the grieving process, and I take good heart in that the lift will be reinstalled somewhere else, and hopefully give the, the same benefit that it gave to us for two years.

Sorry, one of those weird I need to talk about this moments... Thanks for being there everyone, you're all wonderful!

[easterncedar]

When his daughter closed his post office box this week, I felt such a pang. Today I shredded the unused checks from the account of his I was managing, and that felt proper but still painful. I need to make better progress, but it all seems too much. Good for you for taking care of things as you have. I still have all the equipment. I don't know what to do with it.

[Ratcliffe in reply to easterncedar]

One thing I am in life is organised.

This has proved necessary, as up until Davids death I was handling my own and my houses affairs, Davids affairs and all the medical financial and other affairs that come with PSP, and also my mothers house and affairs as she is in a home with dementia. This teaches you to be organised! Oh and the full time job, lol

For me, sorting all the medical things was a number one item, as it removed clutter, and potential bad memories. There is no way that I could get rid of clothes and personal items that quick though!

For you, it may well be different, easterncedar. You will probably know when the time is right. If you ever want to talk about things, or how I did stuff, just drop me a note, I am happy to chat or let you have a phone number.

Quite simply though, I think we do things in different ways, and for me, trying to organise things and "get on with it" is sort of how I work. Strangely though, although I have sorted most things, I don't feel ready to go out and socialise etc yet, so I am just sitting at home in the evenings at the moment, and just going out for work and a couple of other things.

[easterncedar in reply to Ratcliffe]

yes, work keeps me busy and tired. And gives me the excuse not to do more with the house. Thanks for the offer. That means a lot.

[abirke in reply to easterncedar]

hahah...shove it in the corner , and if it's good enough, maybe I can regift it...thats my take on this household stuff....

[easterncedar in reply to Ratcliffe]

And I'm wearing his clothes quite a bit. I figure I will spend my own retirement dressed like a retired Maine wildlife biologist - lots of plaid flannel!

[Althea-c in reply to easterncedar]

🙏💛

[abirke in reply to easterncedar]

hahah

Now thats quite an inheritance

[honjen43 in reply to Ratcliffe]

That is how I felt too! Although I had a good range of places and people to go to, I spent most of that time on my own at home with no great desire to go out. Think it is the socializing bit!

I spent a lot of time with a widowed friend who is a bit further along the track than me. We understood each other.

I also spent a lot of time listening to music, reading which I never found time for before, and pulling weeds out of the garden!

Learning how to relax was the key, as well as looking back on life in general. Weeding was easier than tidying up inside as there was only one thing to do with the weeds. Clearing up inside meant making decisions.

Now, 15 months on, I have reached an impasse! I am surrounded by papers, photos, and obsolete photographic gear - and the place is a mess again! Me too!

Hugs

Jen xxx

[easterncedar in reply to honjen43]

So much the same, except music hurts, too, and my concentration is shot, so I'm just trying to learn how to read again, thrilled when I manage something with substance, Weeding is very satisfying!

[Althea-c in reply to honjen43]

💛🙏

[Katiebow in reply to easterncedar]

I can sense things still feels very painful for you, as you deal with the consequences of loosing a loved one. In the UK most equipment is provided by the state and removed when no longer necessary which makes it easier.

Take care

Love Kate

[easterncedar in reply to Katiebow]

We were given an amazing amount of equipment by our Veterans Administration. I can't imagine how we would have coped without that help; there is nothing like it for the general public. Still, I do wish they would take it back!

[Tippyleaf]

So incredibly brave to grasp the nettle. Grief is strange and often catches us unexpectedly .

I was shopping recently and saw trousers just like ones I used to buy for my hubby. Out of nowhere a fliod of tears , he will never wear trousers like that again. If a pair of trousers can do that I can only begin to imagine the sense of loss when your home lift was removed. Hoping your new normal is light on these moments.

Sending love and hugs

Tippy

[Althea-c in reply to Tippyleaf]

💛🙏

[Hidden]

I would think it might be like trying to put a puzzle back together with major piece missing.I can't imagine how tough it is.

Hugs to all who are dealing with this stage of life.

Dee

[Katiebow in reply to Hidden]

That is a very apt description of how it must feel, knowing the missing piece will never be found.

Kate xxx

[Robbo1]

Dear Radcliffe, Yes, yes, do share. That is what this site is about in my opinion. Your experiences are not mine yet, but I am so appreciative of you sharing yours with us.

B. has been in Palliative Care for a few weeks and we are hoping to get him into a nearby nursing home shortly. I have been looking at all the paraphernalia, carers shoe covers by the door, hospital bed in the front room ,alongside a little one I put together, to be with him. Hoist, wheelchair, shower chair, commode, peg food, medications, carers books. The list goes on. I feel, that despite knowing in my heart he won’t come home again, I can’t get rid of them, as somehow I am being disloyal and cutting off any chance of this happening.

Thank you for sharing. I hope all the good times that you and David had together will fill your heart with happy memories.

Sending a big hug. Rx

[Katiebow in reply to Robbo1]

Oh dear R, all the silly little things that are there to remind you and the horrible sense of guilt deciding if they should go. Sending my support and love

Kate xxx

[Katiebow]

Totally totally understandable, although these are probably memories you would rather put to bed, they are nevertheless part of life spent with David and your most raw memories no doubt. I was very tearful when we had the dining table taken into the lounge to make way for Bens bed, it held memories of family sitting round, talking, laughing. I now find comfort laying on Ben's bed in the evening whilst he is in his recliner chair either listening to the radio or watching tv. I know when it is taken away I will feel a great sense of loss as it will be a reminder that I will be on my own and have to make my own way in the world after all of the years spent together. These are things I often contemplate on quiet moments, imagining how it will be and guess you are now living that reality. Take good care of yourself, be kind to yourself and greive in your own way. Time is a healer and for some it takes longer than others.

Love kate xxxx

[Cuttercat in reply to Katiebow]

Me too Kate. I sit with him and don't want to say goodbye yet. But the rest of my life is dark. Hopefully I'll be able to handle it.

Cutter cat

[Katiebow in reply to Cuttercat]

Xxxx

[homesupport223 in reply to Katiebow]

I remember when they came to collect Bs chair,I was fine with the chair being dismantled and taken to the van.I even remember helping the lad lift stuff into the van.I know Health and Safety but any way. Ran the vacume over the carpet.I thought I was OK.I was until the next morning. When I came into the lounge the empty space hit me. I felt I betrayed her. Then I went into denial mode thinking aloud what if she comes home....... My son just said in a low voice " dad mum is in glory she has gone......"

Well the empty space has only just been filled with my chair, which I actually found very difficult to enjoy.

Henry

[Katiebow in reply to homesupport223]

Dear Henry. Sometimes you want to feel numb because the alternative is too painful. I hope your chair eventually becomes a place of comfort.

Love Kate xxx

[Althea-c]

Dear Ratcliffe,

Mourn your David deeply ....as you try to get your life sorted.

I can't imagine the pain you are in.

Wishing you strength.

Althea

[laila123]

your moments remind me of myself each day still is the same for me when they took all johns stuff closed the door i felt so alone waiting for someone to knock on door and ask me how i am 2 years has passed still have my moments keep talking i do i wish you peace in your life

[Heady]

Hi, I know exactly how you feel. Within hours of Steve dying, I scoured the house and put every bit of equipment into the spare room. Put the house back how it use to be, before PSP. It took me about four months before I started on his wardrobe, but that's clear now. In fact this week, 9,1/2 months down the line, I sorted out my clothes and have started to fill the empty spaces. His glasses are still in the exactly same place as when he died. For some reason I can't put them away. That's fine, I am happy with that.

We all do things at our own pace. Don't let others dictate when and how the time scale of your grief runs.

You said one extremely important thing in your post. "I guess it's another step in the grieving process" please be very proud of yourself. It is all about taking those steps, be they big or small. As long as steps are be taken, you are on the right path, I know some are backwards, but you are moving. It's when that stops, you have a problem.

We are always here to help hold your hand over the trickier parts of the journey.

Sending big hug and much love

Anne

[Robbo1 in reply to Heady]

Oh Anne, I can't believe its nine and a half months!

Glasses are such a personal thing aren't they? I remember holding them and crying when B was having some medical procedure. Mum was the same about Dad's.

Once again, your wisdom is much appreciated.

Thanks and hugs. Rx

[JantheNana]

It seems unexplainable what makes the tears come and what doesn't.This grieving process is unpredictable.Three months now into my loss I am slowly going through Don's things deciding what to keep(and like you ec,deciding what to wear myself.)Some days I feel like I am just moving things around from one place to another.

Yesterday I had the first good laugh and it was healing.

Some moments I forget he is not still here-do others do that?

[Heady in reply to JantheNana]

Of course!!! Often hear a car pull up and wait for the front door to open and him come bounding in. It must be seven years at least, since that happened.

Lots of love

Anne

[Kylie4951 in reply to JantheNana]

That is the hardest part I think! I just cannot believe he is still not here.

Sue

[abirke]

Your post brought painful memories.... I so know how you feel. Getting things back into "order"....The first thing to go was his recliner...that wasn't so bad. but when they took his enteral back I was left breathless as the closure really hit me.

It sounds like you are really forging on, creating your new normal. You really got your house set up for your husband with all sorts of lifts and a wet room and what not! Poor B, the best he got was a ramp and some warning tape on corners of walls! He still had to climb over side of tub, walk up and stairs save for the last 1 1/2 years.... oh God bless us all!

Oh and finality is a word....as we all (PSP patients and carers) lived it for so many years.

Love ya

Andrea

[Katiebow in reply to abirke]

Don't know how you managed without the crucial aids Andrea, guess we just manage with what we have but I suspect Ben would have to be in a home without the suds we have.

Kate xxxx

[Cuttercat]

You sweet girl. I understand completely. I'm here with the oxygen machine whirring in the background. It comforts me now but it will someday be gone and quiet remain. That's the sad part.

Take care.

Cuttercat

[Karynleitner]

What a lovely post. There are so many emotions. It seems when we go through such tragedy, we may all respond differently. It’s great that you know what’s best for you. My sister-in-law wanted everything that reminded her of her husbands illness gone immediately when he died from brain cancer.

Can you please tell me what a through lift is. Would you happen to have a picture. It sounds like something that might help us,

Best wishes to you. May you find peace in knowing your love is no longer struggling.

Karyn

[Ratcliffe in reply to Karynleitner]

It's a through floor lift. It is a rectangular shaped lift to get a wheelchair in, and it literally goes up from in our case the living room, through the ceiling where they have made a hole, into the room above, in my case the box room. Then you just open the door and can wheel the chair out into the room and then around the upstairs. I don't have a picture to hand, but if you google Wessex through floor lift you wil find the one we had here.

[Karynleitner]

Thank you very much. We hope to move soon, up if we do not, it would be perfect. I am looking it up right now. I can understand why you were pleased to have it.

[Karynleitner]

I found it on the internet. It looks amazing. Can you give me some idea of cost,

Thanks again.

[Ratcliffe in reply to Karynleitner]

It was provided by the local authority here as part of their adaptations team. They provide the serious kit in order for people to stay at home and now t me vet into care homes as it is better and cheaper. I think the lift cost about 8000 pounds and then fitting costs which I think were about 1500 pounds to have a builder make the hole and the electrician do the power..

Being as we very incredibly lucky to have it fitted for us, we didn't have to pay the bills, which is why it had to be removed afterwards, so it can be reused somewhere else.

[Karynleitner]

Thanks for the information. It is very helpful.