Going on alone

sunray

Registered User
Sep 21, 2008
1,486
0
East Coast of Australia
good article

I saw the article Nikola and bless you for all you have done and do to make his journey better. You really took on something that a lot of people would have walked away from. The nursing home visits are bitter sweet aren't they? I used to cry on the way home sometimes, had a few regula spots I pulled over into while I dried my tears.

The question I still ask is "WHY?????", why him, why us, why when no-one else in the family is affected did my good man have strokes, TIAs, seizures , fits and dementia? And why because of all of that did we lose the support of his family and so many of our friends? The lifestyle changes, the challenges of caring for a loved one with dementia all take their toll and some days I feel 100.

He has been gone for four months and yet those same questions wake me in the night. I know I cannot do anything about it now but I mourn the loss not just of him but of so many parts of our lives that were good and slowly left us with so little defence against the stigma of dementia. When is our society going to be inclusive and not lock out of their lives those whose diease is marked as a "mental illness" and therefor taboo?

I am slowly trying to get my life back together but doubt I will be able to restart those friendships I have lost. I will make an effort eventually to do so as I loved that circle of friends but after 13 years of caring for Ray I doubt I can bridge the gap and reach out to them again. Okay I may be able to make new friends but I would like to resume old friendships too.

Sue.
 

Nutty Nan

Registered User
Nov 2, 2003
801
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Buckinghamshire
Old friends and new

".............with so little defence against the stigma of dementia. When is our society going to be inclusive and not lock out of their lives those whose diease is marked as a "mental illness" and therefor taboo?"

Sue, people generally tend to shy away from anything that's odd/different/uncomfortable. They don't know how to handle someone with dementia (or someone who has lost a loved one), and rather than getting it wrong, they turn away. It is difficult. I didn't confide sufficiently in many friends/acquaintances/family members, as I did not want to betray my husband. Alzheimer's robbed him of his gentle, charming personality. Very few were able to understand that and keep us company on our bumpy, lonely ride.

There is a big push from the Alzheimer's Society to raise awareness and to educate people. Dementia Challenge. Dementia Friendly Society. Let's hope it leads to breaking down the stigma and reducing the isolation felt by all who live with this disease.

Ramble over. You will get there, little by little, even if you occasionally stumble along the way. Just don't expect too much, too soon. Best wishes! C.
 

sunray

Registered User
Sep 21, 2008
1,486
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East Coast of Australia
some good days, some....

I am really concentrating on trying to get up happy. I know that sounds silly but recovery has got to start somewhere. Some days I can't even do that. I do however find myself smiling sometimes at nothing in particular, so maybe my sense of humour is sneaking back.

We've just had some days of heavy rain, floods north 700 miles or so, bushfires the same distance south of us. Those of us in between just suffered the rain damage. I need to redig some of the gutters that stop the rain flooding under the house. It is the same old story, if it has to be done it has to be done by me. I tackled some of the weeds today, in the humid weather it is work for half an hour, come back inside, go out two hours later, repeat the process.

I have been trying to make slight changes, re-arranged pictures on the walls, put away some ornaments, get out others, seems such a lot of triviality though. I want to do something like repaint the walls but don't want to do anything drastic. Even small changes make me feel uncomfortable, as if Ray might walk back in one day....:(

It still feels as if nothing is really important any more and I am still marching on the spot.

Sue.
 

BeckyJan

Registered User
Nov 28, 2005
18,971
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Derbyshire
Hello Sue,
Still keeping up with your Thread even though I do not post much.
Even small changes make me feel uncomfortable, as if Ray might walk back in one day....
Last evening I had a small dinner party here - lovely folk some of whom have been with me through David's illness. One of our friends now has the onset of dementia so there is even more understanding between us.

So last evening was a small change - me having a not too formal meal here with a group of friends. It felt good but still strange in that I felt (wanted) David to walk back in - but we have to KBO.
 

sunray

Registered User
Sep 21, 2008
1,486
0
East Coast of Australia
I understand how hard it is to change

Thanks Jan, I understand how hard it is to change, but change we must even when the slightest thing seems a sacrilege sometimes. If I move his things will I forget his smile? If I throw away his clothes will I be throwing away our life together?

Congratulations on the dinner party. It is hard to do the "things we used to do" without the ones we used to do them with and I understand thta feeling that of course David will walk in and be in his usual plce again - if only!

I know it is silly but every new thing I do without Ray feels like betrayal. It is survivor guilt, I know that, and hopefully knowing that can do something about it. I am hoping that is what the grief counselling will help me with.

Sue.
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
I really feel for you. I haven't read the whole thread before posting this so please excuse any duplication.

I think loneliness must be one of the worst feelings in the world; it's something I absolutely dread. I love having my husband to share my life with and would be devastated if I had to live my life without him.

It's the reason that I can partially understand my dad's unwillingness to let my mam go into a home even though things are very difficult for him and they don't have much of a life (in my opinion, of course. They may feel differently.)

With regards to your family not mentioning your husband's name on Christmas Day, that must have been very sad and hurtful. To be fair, I would imagine that they were probably doing it for the best of reasons - not to upset you, not to "spoil" Christmas by gran being upset, upsetting the children for Christmas Day, etc., but such a shame for you.

How much better to have acknowledged that he wasn't there, to have talked about how that made you all feel, and to then go on and recall happier Christmases.

My two elderly neighbours have lost both of their husbands in the past couple of years. When I visit them I always talk about their hubbies, and they seem happy to do so. If I was in their shoes I'd want to talk about my husband, to remember the happy life we've had together, to have a bit of a weep if necessary, but mainly to laugh and remember the warmth and the good times.

Sorry to have rambled on. I've not given you much advice, have I ;) but your post seemed so poignant I felt I had to say something.

I hope you have found ways of dealing with your loneliness a little bit. And there are lots of friends here on TP to chat to.

Hugs x
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
I have now read the rest of this thread.

Thank you.

I'm sitting here with tears in my eyes. Suddenly I can see things from my dad's perspective. I have been concentrating too much on dad's physical well being and ignoring his emotional well being. The fact that he has often been in physical danger (from mam's violence, from stress, from his own considerable health problems) has always been paramount in my eyes and I've wanted them to be separated one way or another to try to get my dad back.

My parents have been married 50 years in October. I was seeing mam going into a nursing home as a chance for dad to have a life again, without realising that his life without her by his side would not necessarily kick start his own life.

This thread has made it easier for me to understand.

If my mam does ever go into a nursing home, or dies, I won't be buying dad a suitcase on wheels.

You have given me a lot to think about. Thank you, all you special widows, for sharing your experiences and thoughts about your lives without your husbands.

Take care of yourselves xxx
 

sunray

Registered User
Sep 21, 2008
1,486
0
East Coast of Australia
Thanks College Girl

Thanks College girl. It is not easy to put yourself into your parents shoees. I have been blessed in many ways as I have spent the past thirty years living close to my parents. That also meant I saw the worst of their lives together, including Mum being violent towards Dad who had prostate and bone cancer. Living close to them did mean I was able to help. I look back and realise that as long as four years before they came to live with me I had been working plus helping them with shopping, gardening and housekeepeing on my "days off". But I don't regret one day of it!

I was able yesterday to ask my older son (the one who never volunteers help) to take me to a medical centre as I had encountered a biting insect, possibly a spider during my gardening efforts on Wednesday afternoon. The resulting bite was ballooning and had a very red raised centre and was very sore, too painful for me to sleep. So I reached out for help.

We went to a medical centre and waited two hours, had a three miniute interview with a strange doctor and now with topical cream and an antibiotic I am tackling the problem. Already 24 hours later it looks so much better. My son had his six year old with him and they walked the shopping centre from one end to the other. Good father and son time for both.

I do appreciate what my children do for me, I don't think they realise what I am going through on my own but I appreciate they do care about me, each in their own way, and don't mind me asking for their help when I really need it.

Sue.
 

sunray

Registered User
Sep 21, 2008
1,486
0
East Coast of Australia
the longer you leave it

I had a long talk at our Lions Club meeting with one of the other widows. She asked if I had probated Ray's estate yet? I said no, I was alright till January and then seemed to be overcome by grief for a while. She told me I had better get on with it as the longer I left it the harder it would get.

I hate that I have so much to do and at the moment no will to do it.

Sue.
 

Helen33

Registered User
Jul 20, 2008
14,697
0
Dear Sue,

I will be sending you positive vibes and prayer that you will be given both the will and the strength to get it re-started. I think your friend might be right - it could get harder the longer it is left.

This year I left my accounts right up until the last minute. The accountant was frantic as they didn't want me to incur a fine from the tax office. It was the urgency of the matter that forced me to motivate myself.

Love
 

gringo

Registered User
Feb 1, 2012
1,188
0
UK.
College Girl,
I trust sunray will excuse me diverting her thread just a little bit, but I would like to reinforce your new understanding of your Father’s situation. My wife and I have been together for 63 years. (to-day I got out the valentine’s day card I sent her 63 years ago which we have kept and get out every year). She has now been in a CH. for one year, and to-night asked if we were married.
If you read my ‘Retribution’ that was a very accurate account of my present life. I would expect your Father’s life to be similar if your Mother has to be go into a CH.
At the time, I wished I hadn’t posted it. It cuts too deep. But if it helps you or anybody else to an understanding. I shall feel it served a purpose.
Please excuse me sunray.
 

Nutty Nan

Registered User
Nov 2, 2003
801
0
Buckinghamshire
Advice

Sue, it is not compulsory to follow any advice - however well meant it is. We are all different: you have already shown great courage and determination to 'move on' and embrace new things. Don't put yourself under any unnecessary pressure, just do it in your own time. You will have ups and downs, and you will know when the time is right to take certain steps, or tackle tasks which seem overwhelming. You have every right to feel sad some of the time.
I am sending you virtual hugs and a smile for good luck :).
 

sunray

Registered User
Sep 21, 2008
1,486
0
East Coast of Australia
marching on the spot

I have to learn to live in the moment, in the present. I seem to be re-living days forever gone and not the happier memories either. Because we have had rainy days I think I am spending too much time alone now, giving me too much time to mope.

Our summer is slipping away and I have not built up any happy summer memories so summer 2013 will be a blank in my mind. Saying I must move forward isn't a lot of help.I want to make some changes in life but lack direction. It is too soon to be throwing myself feverishly into new activities, supposing that I did know what I wanted to do.

I wish sometimes I could lay down and sleep and I would wake up brand new, eager to go on in life instead of getting out of bed and wondering how I will get through the week. I am not depressed but on the other hand I am not happy either.

Sue.
 

Helen33

Registered User
Jul 20, 2008
14,697
0
Dear Sue,

I have no memories of last year from May onwards:eek: I have no idea what I did or did not do. It is like trying to look through fog. It is unlike any time I have had in my life. It doesn't feel as though it was bad and it doesn't feel as though it was good. It feels like a blank.

I am so glad that I had no pressure to start making a life:eek::eek: It would have been impossible. I think I must have needed to float aimlessly through it. I would have lived in the moment though because that is what I do best. The difficult thing about living in the moment is when the moment is not good and those moments continue to be not good.

It seems to me that you are living in the moment actually but that the moment is not happy and the moment contains memories of the unhappier times. I wonder whether, like me, you need to find a way of altering 'the moment' at times. I am beginning to learn ways of altering the very difficult 'moments' but I am at the very baby stages of it. These things are so hard to do alone and disconnected from the wider world. You mention that you are finding yourself more isolated because of the rains. I find it often helps to talk things through with someone who can 'hear' or someone who is 'interested'.

TP also helped me a lot even if it was by blogging.

I do hope you will forgive me for chatting to you about myself but it is in an attempt to 'connect' as I remember how very hard it is when finding oneself bereft and alone after all those years. It is very hard. It can get better but the process cannot be bypassed and the process is different for everyone.

For my part I will only wish you the very best. I will hope that you will one day wake feeling more energised. I will hope that you have the strength to cope with 'the present' which is a very unhappy time. I will hope that you will be helped by whatever may be greater than ourselves.

Love and a (HUG)
 

sunray

Registered User
Sep 21, 2008
1,486
0
East Coast of Australia
disconnected

Helen, I think you hit the nail on the head when you used the word disconnected. That is exactly how I feel. I feel as if all the networks are down and although people still do connect with me it is tentatively and not with our old easy comraderie.

Thank you for sharing your own experiences, it is the most worthwhile way of explaining everything to do so honestly from your own point of view. I hate those third person stories, where people pass on wisdom from a friend of a friend (although I am sometimes guilty of that too).

I know I have to weather this and whatever happens happens but I surely am looking for that sunshine ahead.

Sue.
 

winda

Registered User
Oct 17, 2011
2,037
0
Nottinghamshire
Hi Sue, it is now over three months since I lost my husband.

I go through periods of having loads of energy followed by times when I feel like doing nothing. It is during these periods when I am overcome with grief.
I have resumed some activities with the U3A but at the moment have only chosen to do aerobics and a once a month walk. I never look forward to going as I don't yet really know anyone.
I am considering joining a self-help group formed by widows who provide mutual support. I am also going to have bereavement counselling with Cruse.

I am sure all of these things will help, but nothing replaces the husband you have lost does it?

Fortunately I have now probated my husband's estate. I enlisted the help of a solicitor to get the probate for me as I didn't have the strength. It is just as well that I did it quickly as the house needed to be put into trust and so doesn't belong to me as such. When it came to renewing the home insurance I wouldn't have been able to change the insurers if I hadn't received the probate. (The old insurers wanted almost £1000 for building and contents).

I am looking forward to spring as I hope it will help, at least I will be able to get out and work in the garden and I find that quite therapeutic.

I hope you are having a good day and that you don't have too much rain at the moment.

Take care xx
 

sunray

Registered User
Sep 21, 2008
1,486
0
East Coast of Australia
rain!

We had four inches of rain in 12 hours overnight. On top of all the rain we had already had it caused low lying areas on the Central Coast to flood so traffic chaos this morning. I did get some rain in, got up during the night, went to the "little girls room" and splashed through... it was not a disaster,towels soon soaked it up. I will have my son look at the roof at the weekend to see if he can find out where it got through.

I have to keep remembering I am lucky to have a roof over my head, food on the table and some in the cupboard too. It is too easy to curse the bad things in life and not feel blessed by all the good things we have.

I am alone but I don't HAVE to feel lonely and once I get through the initial stages I am sure I will be able to fill my life with things that are useful and things I enjoy.

Sue.
 

sunray

Registered User
Sep 21, 2008
1,486
0
East Coast of Australia
widows wisdom

I have been reading a lot on a widows site widowedvillage.org and I realise there is a lot of wisdom there as there is here. I have been reading a discussion about friendships and what a lot of those say who looked after someone long term, as a lot of us have here, is that friends just slip away and go on with their lives. So much truth in that for us. And although it seems as if you should be able to go back to those old friends when the one you are caring for died, that does not seem to happen either except in a few cases.

It is so sad to think that in the main we will simply have to go on alone, rebuilding our lives and our friendship base as best we can and hopefully finding new friends who can relate to us in our new situation. Now I know why we had groups like Civilian Widows and War Widows form as self-help groups after the War. Widows need support that sometimes friends and family are unable to give.

Sue.
 

danny

Registered User
Sep 9, 2009
3,342
0
cornwall/real name is Angela
Hi Sue, thinking of you and hope that the future is good for you and that you meet new friends whom you can relate to. If your old friends don`t call by then they were never really true friends. Wishing you all the best.
 

Helen33

Registered User
Jul 20, 2008
14,697
0
Dear Sue,

It is too easy to curse the bad things in life and not feel blessed by all the good things we have.
This reminds me of someone's signature which says "don't curse the darkness, light a candle".

I read somewhere on TP that you reached out to a friend on Valentine's day and I thought that was marvellous. It is so good to read that you are also benefitting from the widows site. You will find your way step by step and I do hope each step leads towards a life that feels happy and fulfilled:)

Love