• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Going on alone

Nan2seven

Registered User
Apr 11, 2009
2,525
Dorset
Dear noisette,

I see that you have been a member of TP for fifteen months, that this is your first ever post and that in your Profile you tell us only that you are "a carer". For a parent? For a husband? And for how long?

Many of us at TP have shared a lifetime, fifty years or more, with the person we cared for and the final (and inevitable) loss of them to dementia more than obliterates any "upside" of freedom from caring.

Although one has done a great deal of grieving during the relentless course of the illness, when death finally comes, it becomes a different kind of grieving.

You are not so much hearing here the "negative reactions to ceasing to be a carer", more the perfectly natural reactions to the death of someone very much loved.

The freedom you speak of is not sought at this stage. It can, of course, be taken advantage of later. It may take over a year before one even begins to WANT to take advantage of it.

Your post may have somewhat "taken the breath away" of some, perhaps admittedly older, members of TP. We all have to learn, on our own, the best way of dealing with death. When your time comes to deal with it, your posts may sound a little different to your first one.

I do hope that you are getting help with caring and getting regular breaks. Both can be arranged if you need them.

With love,
Nan
 

TinaT

Registered User
Sep 27, 2006
7,095
Bolton
I miss the shared memories which only belong to my husband and myself. A song, an incident, something which triggers off memories, and I have no one to share them with. After being together for so very long, this is one thing I miss so badly.

xxTinaT
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
I do agree so much with what Nan has written. (Nice to see you back, Nan.)
We, who still have our spouses or partners, even though the person they once were is no longer, are in a different position from those who have lost their loved ones completely.

We still have a focus for our lives and I can only imagine how hard it must be when that focus is no more. I visit my husband most days and still am involved in his life, his pain, his medication etc. If and when I no longer have that, I know I will be lost for a very long time because the person upon whom I am spending most of my waking thoughts upon will be gone. As will the person with whom I have shared over 51 years of married life and so very many memories.
Nan is right. It is the final parting and as such it takes time to recover.
 

sunray

Registered User
Sep 21, 2008
1,436
East Coast of Australia
being alone is so different

I had one year on my own before Ray died as he has in a nursing home, but I saw him every day for three or four hours so that was the core of my day and it was almost as if he were home. Although he couldn't hold a conversation I still told him all my doings for the day, who I saw, who phoned, what I did. That vanished with his death. Now there is no-one to tell. It is a really lonely feeling.

Ray and I were 44 years married and rarely apart prior to that. Like a lot of you I have family, three adult children, seven grandchildren, but they all have their own lives and none checks in regularly. If they do check in I summarise my week to them as my news! But it is not the same as having someone special to talk to, who knows the person you are talking about as a friend.

My days are not structured as they had to be the 12 years I was a caregiver and so it is easy to go from day to day without really registering what is happening so I will have to keep a diary to make sure I remember what happened each day.

I did long for freedom when Ray was at his worst, that last hard year at home before his mobility disappeared and he had to go to the nursing home for his own safety. I understand that that is the way a person still caring might see the widow's life. I hope for things to get better and a new routine to emerge but I am not pushing it. I still have a lot of paperwork to do both for Ray's estate and Mum's and until all that is settled I will not know where I am at financially so can't put any plans into action right now.

Noisette, it is differnt being a widow, one day we all find out what that is like. There is a feeling of isolation, rather like you have left the familiar shore and are now in a rather frightening place. It will become okay, I know that, but at the moment I am still in limbo.

Sue.
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,529
Dundee
These negative reactions to ceasing to be a carer amaze me. There are so many things I long to do; so many other family members and friends I would like to spend time with; so many local events going on;so many places yet unvisited.My list of things to do one day is so long that it will take a good few years to accomplish. Are all other carers so much nicer tha n me that no one shares my longing for freedom?
I for one do not long for freedom from my husband. Yes when my mum died there was a sense of release. Partly because she was 93 and her suffering was over. Partly because my husband I got back some of our old life and could do things we couldn't do while caring for my mum.

My husband has Alzheimers and yes we had a list of things we wanted to do and accomplish. These will never be now. I certainly don't want release from this so I can do them on my on.
 

Nutty Nan

Registered User
Nov 2, 2003
788
Buckinghamshire
Dear Noisette,
You seem to be having a really rough time, and I hope you are getting some support in your role as carer.
However, I do not feel that previous posts were particularly negative, just honest in their resignation to a situation we still are not able to change: none of us would have chosen to be carers for our spouses (or parents/friends etc), and likewise, none of us would have chosen to be widows, even during the stressful times when we simply wished for an easier ride.
Izzy hit the nail on the head: "I certainly don't want release from this so I can do them on my on". The freedom we once craved is rather hollow without anyone to share it.
Best wishes, C.
 

winda

Registered User
Oct 17, 2011
2,037
Nottinghamshire
There is a feeling of isolation, rather like you have left the familiar shore and are now in a rather frightening place. It will become okay, I know that, but at the moment I am still in limbo.
You put this so eloquently Sue - it is exactly how it is.

It is just over two months since I lost my husband and I still feel quite lost.
Some days are better than others in that I am less emotional but I then feel quite numb.

Like you I enjoy being with my grandchildren who help me to take my mind off things and I have family nearby, but they all have their own lives.

I also feel the need to talk about my husband but like others here I find that I am the only one who does amongst the family. It is easier to talk about him to people who knew him but who were less emotionally involved.

I also have lots of paperwork to do and this keeps me occupied but can also be distressing because of what it represents. I will be glad when it is all done.

I am thinking of returning to the U3A which recommences this coming week but as I haven't been since September and only joined in August, I don't know how this will feel.
I only met a few people who all knew that my husband was in a NH and now I will have to tell them that he has died. I don't know if I can face it.
I will see how I feel on the day.

Best wishes xx
 

Nutty Nan

Registered User
Nov 2, 2003
788
Buckinghamshire
Winda, your plan sounds good to me: U3A will provide a focus for you, a social setting which did not, in the past, include your late husband, which means you won't feel quite so odd going along without him, but you do already know a few of the members. The whole group will have had a break over Christmas, and will be embarking on a new 2013 programme which you will be able to take an active part in.
I know you will have to be very brave and mention your husband's death. But you know that you will have to do this over and over again wherever you go, and at least your new acquaintances may be a little less inquisitive because they do not know a great deal about you yet. They may feel less awkward towards you than old friends, who know both you and your husband.
Thumbs up and best wishes! Carmen
 

stikwik

Registered User
Oct 31, 2007
109
Nottingham
glad of tp

thank you to everyone who has spoken on this thread. i am so glad i get the monthly reminder emails from alz soc to remind me to check tp as this thread is very relevant to me just now, when i've been asking friends for advice on such similar matters, and they have no direct experience like us here. i think i forget to visit here just through busyness, but thank everyone for being here for when i do come.

if anyone's interested, me and my hubby should be in a national newspaper article on wednesday (not quoted in case i'm not allowed to by tp?). if someone says i can, i'll post which one, or if not then pm me, if you're interested of course.
 

sunray

Registered User
Sep 21, 2008
1,436
East Coast of Australia
hi Nikola

Nikola you might start your own thread with this post as I am sure you have a lot of friends on TP who will miss it here on mine. Your journey at such a young age has been a hard one and I looked at your site which is very good and hope that you find others do too and post their stories there.

I found going through the nursing home stage the hardest. I had all my ideas on what should happen to Ray and it was hard to know that he nmight be one of a dozen people who needed to be toiletted etc at the same time and was just a number on that list.

Luckily the facility he was in welcomed imput from families and was always co-operative with suggestions and requests and I quickly made friends with some of the other relatives who came there regularly and with some of the staff members. I think between us we gave Ray the best life he could have for the last twelve months of his life.

Now for me it is time for a change. Too early yet to do much but I want to make myself comfortable here now. I am not that well off financially but it is a matter of getting paperwork done and finding out what I need to do to make changes to my home etc to make me comfortable with life as it is now - on my own.

Sue.
 

sandracallum

Registered User
Dec 13, 2011
5
Gatley Cheshire
I can recommend a book I am currently reading called "Past Caring" by Audrey Jenkinson. It is a collection of stories written by former carers on how they rebuilt their lives after their loved ones had gone.
My husband has now been in hospital and a nursing home for the past 9 months and although he has in one way already been taken from me by Alzheimers I still get enormous bittersweet comfort from his physical presence and dread the day when that may be taken from me.
I don't know how to be anything other than a wife and carer
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
Hi Stikwik (Nikola)
As Sunray has mentioned I do suggest you start a Thread of your own and you can post the link to your newspaper article (providing it is not a contentious issue :rolleyes: - which I am sure it is not).
When you do I suggest you go to the main section of the Forum - you will find it here

To start a new Thread find the grey button at the top left.

I look forward to seeing your link there.
 

stikwik

Registered User
Oct 31, 2007
109
Nottingham
article date moved

Thanks Sue, Sandra and Jan - lovely to hear from you. I heard earlier today that the article has had to be moved to next Wed instead (16 Jan) but I will post in the section you suggest when it does occur. It certainly won't be contentious - just about our living with the illness, I guess. It's the Daily Mirror fyi, anyway. And I have already started looking up that book Sandra - seems good by the reviews.
 

sunray

Registered User
Sep 21, 2008
1,436
East Coast of Australia
going to meetings etc since the two deaths

I went to Ray's stroke recovery meeting today, the committee members asked me to continue there as I can talk to others whose cared for person is most likely going into a nursing home. I am no longer a carer so rarely give advice on caring issues as I believe that comes better from someone who is still handling day to day stress and frustration.

On Wednesday I go to the Carer's meeting at Mum's nursing home as they like you to continue to come till the end of twelve months after the death of your loved one to make sure you are travelling oaky. I will go to a few, not sure it will be for twelve months though.

January has a relaxed beginning but soon meetings start up again and there are, believe it or not, still people coming up and saying they have only just heard of my loss, usually Mum not Ray though some are still finding out about Ray's death last September. Maybe news doesn't travel as fast as it used to.

I find life feels sometimes as if I am running with all my might and not getting anywhere. It makes it harder now we don't have an official mourning period as people do expect that you have "got over it and moved on" now.

Sue.
 

sunray

Registered User
Sep 21, 2008
1,436
East Coast of Australia
starting to come out of the fog

I have eaten out alone, I have arranged a meet up with a couple of other widows, I have made some phone calls to get quotes for a couple of things to be fixed on the house. In other worlds I am starting to come out of the fog.

I don't know why it has taken me this long to get from the emotional into the logical side of my brain but it has. I still wake up muddled and not wanting to go on with the day some mornings but others I swing my feet over the edge of the bed and stand up determined to do some little things around the house and garden, to make a difference and fill my day instead of just managing to get through it.

I have been organised and busy, as a caregiver, for so many years it amazes me that I got to be this jelly woman instead of the strong woman I always used to be. Hope I "get over it" soon.

Sue.
 

Nanak

Registered User
Mar 25, 2010
1,973
60
Brisbane Australia
I have eaten out alone, I have arranged a meet up with a couple of other widows, I have made some phone calls to get quotes for a couple of things to be fixed on the house. In other worlds I am starting to come out of the fog.

I don't know why it has taken me this long to get from the emotional into the logical side of my brain but it has. I still wake up muddled and not wanting to go on with the day some mornings but others I swing my feet over the edge of the bed and stand up determined to do some little things around the house and garden, to make a difference and fill my day instead of just managing to get through it.

I have been organised and busy, as a caregiver, for so many years it amazes me that I got to be this jelly woman instead of the strong woman I always used to be. Hope I "get over it" soon.

Sue.
Its a whole change of pace. You now can put yourself first and that is scary. For so long both Rays and your Mums needs primarily came before yours.
I don't feel you need to 'get over it' you just need to learn to work through it. You are doing admirably :D
Nanak
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,529
Dundee
Well done Sue. It can't be easy but it sounds like you're going in the right direction. Well done. x
 

stikwik

Registered User
Oct 31, 2007
109
Nottingham
article on other thread

hi all

just to say i've just posted the daily mirror article that finally showed up on friday, in the main forum. i think that was suggested as the best place.

nikola x
 

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