Set me free - for just five minutes!

[kindred]

I know that I am now seen through a dementia filter, the woman whose husband is in a nursing home. Yes, he is and I am with him at least 5 days a week, and it's what I want to do. But outside this, I find two things, that dementia seems to have invaded my mind - I think it's addictive and the nurses who work at Keith's home say the same thing, it's what they think about, their patients, how they reacted, what they can do to help.
My story, in a nutshell is that after a pretty appalling ordeal being sole carer for my husband at home, he is now in a loving nursing home and I am trying, just trying to get five or ten minutes of joy, fun, oh you name it, all that stuff that now seems impossible.
Are we going to be affected by dementia for the rest of our lives? Being a mental health professional myself, I think this may be the case.
Other thing is, my friends, colleagues, neighbours bring all conversations, e mails every thing around to dementia and what is going on with Keith, how far deteriorated he is now … and I feel I am imprisoned in a tower of uninvited words such as: tragic, sad, appalling, devastating, terrible, lonely, miserable, poor quality of life, unbelievable, horrible, etc etc etc. I can e mail them about my sweet peas coming into flower and back comes a reply asking about poor dear Keith and how sad all this is and what a comfort my sweet peas must be to me ...

Those who kindly follow my thread about life in a nursing home (which I will resume when I have the energy!) will know it is almost unheard of for me to rant. I would so like to know if others of you feel this way.
Love and best, Kindred. xxxx

 

[Rach1985]

I know that I am now seen through a dementia filter, the woman whose husband is in a nursing home. Yes, he is and I am with him at least 5 days a week, and it's what I want to do. But outside this, I find two things, that dementia seems to have invaded my mind - I think it's addictive and the nurses who work at Keith's home say the same thing, it's what they think about, their patients, how they reacted, what they can do to help.
My story, in a nutshell is that after a pretty appalling ordeal being sole carer for my husband at home, he is now in a loving nursing home and I am trying, just trying to get five or ten minutes of joy, fun, oh you name it, all that stuff that now seems impossible.
Are we going to be affected by dementia for the rest of our lives? Being a mental health professional myself, I think this may be the case.
Other thing is, my friends, colleagues, neighbours bring all conversations, e mails every thing around to dementia and what is going on with Keith, how far deteriorated he is now … and I feel I am imprisoned in a tower of uninvited words such as: tragic, sad, appalling, devastating, terrible, lonely, miserable, poor quality of life, unbelievable, horrible, etc etc etc. I can e mail them about my sweet peas coming into flower and back comes a reply asking about poor dear Keith and how sad all this is and what a comfort my sweet peas must be to me ...

Those who kindly follow my thread about life in a nursing home (which I will resume when I have the energy!) will know it is almost unheard of for me to rant. I would so like to know if others of you feel this way.
Love and best, Kindred. xxxx

Yes I agree, I feel every decision I make now is based around Alzheimer’s. will this food be eaten, will I have enough time to do that, getting a text from someone asking how things are, knowing what they mean.
I have a holiday booked for end of November and I’m actually now dreading it and wish I hadn’t booked it. It’s only for 4 nights, but all I can think is I’m going to be worried the whole time, why am I bothering?!

 

[Grannie G]

When my husband was in residential care I visited every alternate day and our son visited him at the weekend.

My free days were for me.

I knew he was being well cared for. I knew he was contented. I knew his health was deteriorating.

I refused to enter long explanations with anyone other than our son and a couple of very close friends about his condition.

All we can do is try to get the balance right if we can.

There`s no harm in a rant. It`s a big part of what DTP is for. We can rant away here to strangers who have become virtual friends and know they understand. I didn`t need to rant to friends and family who could only respond with platitudes. I made it clear I did not want to hear unsolicited advice.

Care homes are a half way house between 24/7 home care and sharing the care with professionals. I found our care home gave me respite from full time caring and to some extent from dementia and I have heard the same from others.

Of course I made myself available when necessary, when he had infections, when he was hospitalised and when we had meetings but on the whole I managed some outings, some short breaks and some peace and quiet at home.

I`m sure I`ll be affected by dementia for the rest of my life @kindred. I`m sure anyone who has lost someone dear to them who had other illnesses will be affected in the same way.

I hope the rant helped and I hope the support I know you will get will help too.

 

[Izzy]

Dementia has been part of my life for 18 years and I think it will always be part of my life.

How it has affected me has been different at different times within these 18 years. My husband was diagnosed with Alzheimer's in 2001 - around the time of my 50th birthday. He died in July 2016. My mother had vascular dementia and lived with us for the last 5 years of her life. She died in August 2011. During these years I coped many things others on the forum are coping with. In 2016 I had to cope with my husband's death. There are now questions about whether my brother has vascular dementia.

Many of my current friends I have met through dementia. A good number of them have lost their husbands to the disease. More often than not the conversation turns to dementia when we are together. Once a week 8 of us meet for coffee. Two of the group come with their spouses who have dementia. The rest of us have lost their husbands. We're a mini support group. My husband and I were in a choir for people with dementia and their carers. I'm now the secretary of that choir so of course dementia is central to that part of my life. I've chosen to stay on this forum since my husband died so again dementia is with me every day.

I'm taking part in a dementia research project called EPAD so of course thoughts of whether I may develop dementia are often with me.

Life is not how I would want it to be. I wish more than anything that my husband was still with me. Having said that the silver lining for me is the fact that I've made some very good friends over the 18 years and I know they will always be there for me.

In short although it's different to when I was living with dementia it still has a big impact on my life.

Sorry for the ramble.

 

[marionq]

@Izzy you have been exceptional to your family and I felt myself reeling at the news that your brother may now have Vas Dem. There is no fairness or justice with this dratted disease. I am glad you have made friends though as you deserve something out of this horror story we are all in to greater or lesser degrees.

Best regards.

 

[Izzy]

@Izzy you have been exceptional to your family and I felt myself reeling at the news that your brother may now have Vas Dem. There is no fairness or justice with this dratted disease. I am glad you have made friends though as you deserve something out of this horror story we are all in to greater or lesser degrees.

Best regards.

That's so kind Marion. Thank you. He has lots of other health issues but I think because of our experience with our mum he and his wife are thinking he might be facing that too.

 

[dancer12]

I know that I am now seen through a dementia filter, the woman whose husband is in a nursing home. Yes, he is and I am with him at least 5 days a week, and it's what I want to do. But outside this, I find two things, that dementia seems to have invaded my mind - I think it's addictive and the nurses who work at Keith's home say the same thing, it's what they think about, their patients, how they reacted, what they can do to help.
My story, in a nutshell is that after a pretty appalling ordeal being sole carer for my husband at home, he is now in a loving nursing home and I am trying, just trying to get five or ten minutes of joy, fun, oh you name it, all that stuff that now seems impossible.
Are we going to be affected by dementia for the rest of our lives? Being a mental health professional myself, I think this may be the case.
Other thing is, my friends, colleagues, neighbours bring all conversations, e mails every thing around to dementia and what is going on with Keith, how far deteriorated he is now … and I feel I am imprisoned in a tower of uninvited words such as: tragic, sad, appalling, devastating, terrible, lonely, miserable, poor quality of life, unbelievable, horrible, etc etc etc. I can e mail them about my sweet peas coming into flower and back comes a reply asking about poor dear Keith and how sad all this is and what a comfort my sweet peas must be to me ...

Those who kindly follow my thread about life in a nursing home (which I will resume when I have the energy!) will know it is almost unheard of for me to rant. I would so like to know if others of you feel this way.
Love and best, Kindred. xxxx

Hi Kindred:

Know exactly how you feel. Once we become carers it's like we give up our role as people. Everything is about them, we don't get to have feelings anymore, if we do it's secondary to how they feel. I once spoke to a friend and she asked how I was feeling, I said I felt like I was existing not living. Having said that HOW ARE YOU DEAR KINDRED?

 

[kindred]

Crumbs, guys, I am so humbled and grateful for your replies, feel so appreciative. Thank you with all heart. with love, Kindred.xx

 

[kindred]

Hi Kindred:

Know exactly how you feel. Once we become carers it's like we give up our role as people. Everything is about them, we don't get to have feelings anymore, if we do it's secondary to how they feel. I once spoke to a friend and she asked how I was feeling, I said I felt like I was existing not living. Having said that HOW ARE YOU DEAR KINDRED?

Oh thank you so much dancer. Apart from all this, I'm OK. Looking forward to being with Keith tomorrow, I was at work today and even there am not immune from the tower of words!! I should not have to explain this to fellow psychotherapists. Oh my dear, I know, you feel like you are existing not living. I have cared for people with multiple sclerosis and cancer and it does not have, or it did not on me, have the effect of making me give up my role as a person in the way that this does. One of my low spots was when I was exhausted from caring and repairing the house after yet another destructive episode, I begged K (OH) just to be nice to me for a minute or two, and of course, he had no idea what I was asking. Realised I had become a beggar. And I used to feel that outside with other people: please smile at me, please say something nice, please don't rub my situation in … don't make me feel worse than I already do ...
I am learning to hold my chin up again, TP has helped so much with this. Thank YOU for asking about me, dancer. Thank you. with love, Geraldinexxx

 

[Jaded'n'faded]

I think I'd liken to it to the way I felt when I first had children. People asked me about nappies or cleaning products or what milestones my kids had reached (funny how their kids always started solids/walked/talked before mine...). No one ever asked what I thought of the chancellor's latest speech or about their work projects. (They had proper jobs, I was just a new mother so no longer had a brain.) I felt like a Stepford Wife at times.

Now I have an 87 year old 'child' I'm responsible for. I'm sure if I were to go to a party (fat chance!) and the host introduced me to people, it would not be, 'This is JnF - she runs a small business,' or, 'she loves Agnes Obel like you do!' or, 'she loves ancient history and alpine plants,' etc. Oh no! It would be, 'this is JnF - her mother has dementia.'

 

[AliceA]

Strange I had been thinking of you and when I opened this you were there. The short answer is, yes. Dementia has shaped us like every other experience, but I do not need to tell YOU that.
As always it is other people that almost seem to gloat with concern for us, almost if it will protect them.
I am now on a few forums that know nothing of my private life, just my contributions. These help me hold to the other part of me.
I get tired when told how well I am doing, even brilliantly!!!
Anything rather than hold my hand in case I drown them in tears! So rant on in a place you are loved. alice xx

 

[Grahamstown]

It was great to ‘see’ you as you G. I know exactly what you mean and I have set Tuesday mornings as no dementia talk mornings. I go to a book club and not much time for other chat, although you do find out the serious problems that other people suffer bit by bit. Then I go to U3A and it’s not at all about dementia, but learning to use an iPad and I can see which people have a bit of MCI but they are making an effort. Even so it’s very difficult to escape because it’s present all the time in your head and very all consuming. No more talk of that now on this thread!

 

[dancer12]

Oh thank you so much dancer. Apart from all this, I'm OK. Looking forward to being with Keith tomorrow, I was at work today and even there am not immune from the tower of words!! I should not have to explain this to fellow psychotherapists. Oh my dear, I know, you feel like you are existing not living. I have cared for people with multiple sclerosis and cancer and it does not have, or it did not on me, have the effect of making me give up my role as a person in the way that this does. One of my low spots was when I was exhausted from caring and repairing the house after yet another destructive episode, I begged K (OH) just to be nice to me for a minute or two, and of course, he had no idea what I was asking. Realised I had become a beggar. And I used to feel that outside with other people: please smile at me, please say something nice, please don't rub my situation in … don't make me feel worse than I already do ...
I am learning to hold my chin up again, TP has helped so much with this. Thank YOU for asking about me, dancer. Thank you. with love, Geraldinexxx

Hi Kindred:

No problem, we are all in this together..I loved going out just browsing in the stores, now I am home 24/7 and get all life's problems blamed on me, his support workers who are here for an hour at most get all the laughs & smiles. I just get the anger & frustrations. Where is the fairness. But I'll keep my chin up too & try to cope with all the craziness and every so often enjoy a glass of wine..

 

[dancer12]

It was great to ‘see’ you as you G. I know exactly what you mean and I have set Tuesday mornings as no dementia talk mornings. I go to a book club and not much time for other chat, although you do find out the serious problems that other people suffer bit by bit. Then I go to U3A and it’s not at all about dementia, but learning to use an iPad and I can see which people have a bit of MCI but they are making an effort. Even so it’s very difficult to escape because it’s present all the time in your head and very all consuming. No more talk of that now on this thread!

Hi Grahamstown:

Sounds lovely, how I miss it all.

 

[Grahamstown]

Hi Kindred:

No problem, we are all in this together..I loved going out just browsing in the stores, now I am home 24/7 and get all life's problems blamed on me, his support workers who are here for an hour at most get all the laughs & smiles. I just get the anger & frustrations. Where is the fairness. But I'll keep my chin up too & try to cope with all the craziness and every so often enjoy a glass of wine..

You are cheerful here for a brief moment and enjoy that glass of wine, you deserve it in spades with your experience of dementia. Cheers!

 

[dancer12]

You are cheerful here for a brief moment and enjoy that glass of wine, you deserve it in spades with your experience of dementia. Cheers!

Hi Grahamstown:
I keep trying to learn about dementia (taking Alzheimer courses & reading books) but the more I learn the less I know & understand, but the wine is easier to swallow.

 

[Lawson58]

Dementia of course has affected my life and my role as a carer. People do ask me how my husband is but I always try to find something funny to relate and as they are all aware that my husband still plays bridge, I tend not to get the 'how sad' commentary.

However, my friends have spouses or relatives who have a range of health issue too. - diabetes, heart problems, heart transplant, cancer so so we express our concern but we are all in the same boat.

 

[AliceA]

I concur with you all, I was in book clubs, active in the U3a and going to lectures. Now as a 24/7 my iPad is my window on the world. I am brisk with conversations that sound negative, I subdue 'experts' on my life with a few technical terms. I try to nourish the me inside. Sometimes with great difficulty. Friends have dropped off either through age or illness.
My quirky sense of humour helps.

 

[Palerider]

Mmm -I am constantly reminded of it, everyone asks about mum, from work colleagues, to friends on FB and family..and even the guys in Sainsbury's (yup), no one asks about me, yet they make the assumption that I do a 'brilliant job' of caring for her and I'm not allowed to respond with what I really want to say.

The conversation is always negative as you have highlighted KIndred. People forget its not all bad, we do have good days and even though the vail of dementia is closing in, mum still shines through. Something some people would realise if they listened to me when I spoke to them.

Will it affect us for the rest of our lives? I don't think this is something we can walk away from easily, having gone through this journey with someone we love be that a life partner, parent, brother/sister or good friend. I never used to think of dementia, now everyday I think of it, either about mum or something else surrounding it.

I do firmly believe in a saying that a MH nurse once said to me many years ago:

"you can't work in a paint shop without getting splashed"​

No matter how hard I try to wash away the splashes, they just won't budge

 

[2jays]

Will it affect us for the rest of our lives? I don't think this is something we can walk away from easily, having gone through this journey with someone we love be that a life partner, parent, brother/sister or good friend. I never used to think of dementia, now everyday I think of it, either about mum or something else surrounding it.

It’s something that is affecting me in a negative way at the moment

Someone on TP likened it to PTSD and the person I talk to - not a counsellor by might as well be - has considered I’m not in deep depression per se, they consider it PTSD grief

Its 2 years 6 months since mum died. I cared for her for around 10 years in one shape or form. Her last three years were in care

The first year after her death I continued going through the motions of life in a kind of numb state. The second year, I started to grieve after a fashion. It’s during the last six months that I have been helped to understand that I am deeply grieving - with a sort of understanding but the un said implication being “why suddenly now? It’s been nearly 3 years you should be used to it now”

I do feel shell shocked, so the ptsd scenario feels apt. And the depth of grieving is so intense that I feel I’m feeling the 10 years of grieving all I one go

Hopefully these deep feelings won’t affect me for the rest of my life, but the dementia experience will always be with me

At the moment I don’t feel able to give anyone support, but hopefully with the experience of my dementia journey (hate that word but only one I can think of) I will be able to in the future