Dementia’s journey

[Dutchman]

Just come back from the home and helping Bridget to eat. She eats all her food up when you’re not here I’m told. I’m advised not to talk when feeding as this causes a distraction. I chatter too much. Tell her I miss her and love her, too much. I guess they were trying to be nice when they said I think she misses you. I hope she doesn’t. I can’t go in every day, I really can’t. I used to in the early days but I need the break.

 

[Wifenotcarer]

I don’t know who’s going to pick this up but I’m going crazy thinking the way I thought when the dementia took my Bridget away back in 2019
Bridget had what I believe was a couple of TIA’s back in 2014 while we were on holiday. She was breathless and fell back on the seat and apart from that seemed ok and recovered and I did nothing. Why o why didn’t I follow it up? Why didn’t I insist on a doctors appointment? She may have avoided getting brain damage and then dementia and we’d be ok now instead of her life ruined.
It’s my fault really that she’s like this, that I simply thought of the inconvenience of the situation and now I’m suffering and she’s another person to me.
So much lost and I’ve gone back all these years to a time when I did nothing and now I’ve ruined her life as well as my own.

Peter - I am going to be forthright here. I have been following your journey for years now. I have not been on the forum much since my Ian died, but when I look in, I find you in a worse place than ever. And yet you report that Bridget is happy and well cared for, not suffering in any way, which is thanks to all you have done to make this a reality for her.
Ian also had a TIA while he was still at home - he collapsed in the doorway, half in half out while we were setting off to an appointment with the GP. I rang the GP immediately and he came to our house within 5 minutes, checked him over, checked what medication he was on for High Blood pressure, which he confirmed was the appropriate dose. Then he explained that this had been a TIA, probably caused by the stress/worry of getting ready for the appointment. He went on to say that TIAs are a common feature in those suffering from Dementia.
Ian went on to have another two which resulted in a fall, while in the Care Home. The first one he was taken to hospital and monitored overnight, then back to care home. The second He fell heavily, breaking his hip, had the hip repaired successfully, was not making much progress with rehab and then developed hospital acquired sepsis, end of life care and died peacefully and pain free.
I tell you this story to emphasise that even with prompt medical attention and the appropriate medication, TIAs cannot be prevented in people with dementia.
All of us on the forum KNOW that you have nothing to blame yourself for. We all know how difficult and upsetting dementia is for the Carers but we see you torturing yourself all the time with guilt and a self diagnosis of lack of compassion. You have done an amazing job of caring for and finding the best care for Bridget. Please, please try to see yourself as we see you, find some enjoyment in the precious time you still have with her, treasure every smile and do not dwell on her lack of recognition - she does know that she is loved and that you care about her.
Forgive me if I have overstepped the mark, but it pains me to hear you still in such torment.

 

[jennifer1967]

Just come back from the home and helping Bridget to eat. She eats all her food up when you’re not here I’m told. I’m advised not to talk when feeding as this causes a distraction. I chatter too much. Tell her I miss her and love her, too much. I guess they were trying to be nice when they said I think she misses you. I hope she doesn’t. I can’t go in every day, I really can’t. I used to in the early days but I need the break.

im not sure if bridget still verbalizing, if she is, eating and talking are not a good combination. the SALT team told my husband either to eat or talk but not at the same time as an intake of breath to speak may contain food as well.

 

[Dutchman]

Peter - I am going to be forthright here. I have been following your journey for years now. I have not been on the forum much since my Ian died, but when I look in, I find you in a worse place than ever. And yet you report that Bridget is happy and well cared for, not suffering in any way, which is thanks to all you have done to make this a reality for her.
Ian also had a TIA while he was still at home - he collapsed in the doorway, half in half out while we were setting off to an appointment with the GP. I rang the GP immediately and he came to our house within 5 minutes, checked him over, checked what medication he was on for High Blood pressure, which he confirmed was the appropriate dose. Then he explained that this had been a TIA, probably caused by the stress/worry of getting ready for the appointment. He went on to say that TIAs are a common feature in those suffering from Dementia.
Ian went on to have another two which resulted in a fall, while in the Care Home. The first one he was taken to hospital and monitored overnight, then back to care home. The second He fell heavily, breaking his hip, had the hip repaired successfully, was not making much progress with rehab and then developed hospital acquired sepsis, end of life care and died peacefully and pain free.
I tell you this story to emphasise that even with prompt medical attention and the appropriate medication, TIAs cannot be prevented in people with dementia.
All of us on the forum KNOW that you have nothing to blame yourself for. We all know how difficult and upsetting dementia is for the Carers but we see you torturing yourself all the time with guilt and a self diagnosis of lack of compassion. You have done an amazing job of caring for and finding the best care for Bridget. Please, please try to see yourself as we see you, find some enjoyment in the precious time you still have with her, treasure every smile and do not dwell on her lack of recognition - she does know that she is loved and that you care about her.
Forgive me if I have overstepped the mark, but it pains me to hear you still in such torment.

Dear @Wifenotcarer. Please know that I find your comments strangely comforting because sometimes I can’t see the wood for the trees and it needs someone like yourself to, outside the situation, put me right.

It’s the quiet times, when I’m ruminating over it all, that I question everything. I suppose that’s what someone kind like you, who’s taken the trouble to write, can reassure me and try to put my mind at ease.

Let me just say that I know Bridget is in the best place for her dementia. She smiles a lot and seems content. And that’s more than I could ever offer her here at home. I’m humbled that you’ve followed me on the Forum. Thanks once again

 

[Dutchman]

Peter - I am going to be forthright here. I have been following your journey for years now. I have not been on the forum much since my Ian died, but when I look in, I find you in a worse place than ever. And yet you report that Bridget is happy and well cared for, not suffering in any way, which is thanks to all you have done to make this a reality for her.
Ian also had a TIA while he was still at home - he collapsed in the doorway, half in half out while we were setting off to an appointment with the GP. I rang the GP immediately and he came to our house within 5 minutes, checked him over, checked what medication he was on for High Blood pressure, which he confirmed was the appropriate dose. Then he explained that this had been a TIA, probably caused by the stress/worry of getting ready for the appointment. He went on to say that TIAs are a common feature in those suffering from Dementia.
Ian went on to have another two which resulted in a fall, while in the Care Home. The first one he was taken to hospital and monitored overnight, then back to care home. The second He fell heavily, breaking his hip, had the hip repaired successfully, was not making much progress with rehab and then developed hospital acquired sepsis, end of life care and died peacefully and pain free.
I tell you this story to emphasise that even with prompt medical attention and the appropriate medication, TIAs cannot be prevented in people with dementia.
All of us on the forum KNOW that you have nothing to blame yourself for. We all know how difficult and upsetting dementia is for the Carers but we see you torturing yourself all the time with guilt and a self diagnosis of lack of compassion. You have done an amazing job of caring for and finding the best care for Bridget. Please, please try to see yourself as we see you, find some enjoyment in the precious time you still have with her, treasure every smile and do not dwell on her lack of recognition - she does know that she is loved and that you care about her.
Forgive me if I have overstepped the mark, but it pains me to hear you still in such torment.

Hi again . I wanted to write again to express my thanks for your reply and to say how sorry I am that you lost Ian due to complications with dementia. You have been through so much and still have time to talk to me - thank you.,

 

[blackmortimer]

May I intrude for a moment to agree with @Wifenotcarer. A TIA is often referred to as a mini stroke and seems to have much in common the maxi version such as I have had. I was given to believe that at least one of the causes, if not the principal one, was the stress of Margaret's death and I think that was fair comment. Also while I was in hospital I had dose of pneumonia brought on by a malfunction in my swallow mechanism and like @Wifenotcarer's late husband
have been having having fairly intense therapy from the local SALT team. So it really is important, @Dutchman that you take care both not to cause Bridget stress and to make sure as far as you can that you make her meal times as peaceful as possible because if one tiny particle of food "goes down the wrong way" it can wreak havoc when it gets into the lungs. To be fair to you, I would never have believed it if I hadn't experienced it. May I, very tentatively, suggest that just being with Bridget might be enough to reassure her. You don't need to talk. She knows you love her. Just being there is enough. Try and go every day even if for a short time (I don't think dementia patients have much idea of time anyway). You may find, like me, that one day later on you might look back on those days as a sort of golden age. I certainly do. Please free to tell me , in the immortal words of the former Education Secretary, to "shut up and go away" if I'm out of order. Just bear in mind that, like so many others here, I feel for you as only one who has been through it all can feel, God bless.

 

[Dutchman]

May I intrude for a moment to agree with @Wifenotcarer. A TIA is often referred to as a mini stroke and seems to have much in common the maxi version such as I have had. I was given to believe that at least one of the causes, if not the principal one, was the stress of Margaret's death and I think that was fair comment. Also while I was in hospital I had dose of pneumonia brought on by a malfunction in my swallow mechanism and like @Wifenotcarer's late husband
have been having having fairly intense therapy from the local SALT team. So it really is important, @Dutchman that you take care both not to cause Bridget stress and to make sure as far as you can that you make her meal times as peaceful as possible because if one tiny particle of food "goes down the wrong way" it can wreak havoc when it gets into the lungs. To be fair to you, I would never have believed it if I hadn't experienced it. May I, very tentatively, suggest that just being with Bridget might be enough to reassure her. You don't need to talk. She knows you love her. Just being there is enough. Try and go every day even if for a short time (I don't think dementia patients have much idea of time anyway). You may find, like me, that one day later on you might look back on those days as a sort of golden age. I certainly do. Please free to tell me , in the immortal words of the former Education Secretary, to "shut up and go away" if I'm out of order. Just bear in mind that, like so many others here, I feel for you as only one who has been through it all can feel, God bless.

Thanks for the reply @blackmortimer. All you say is true of course and makes utter sense. I’m not going to tell you to shut up nor are you out of order.
My problem ( out of many) is that I let my mind and emotions cloud the rational side of things. She said today that “I wish”, just that, and then my mind spirals away thinking she wishes she was different, not suffering with dementia and I ache to reassure her, to make her feel secure. I want to fold her in my arms and protect her and take this anxiety away.
I could go in every day and just be there but I need a break but then I think I ought to be there. Can’t win! This indeed is torture when my mind tries to imagine her thoughts and there’s little I can do to ease her mind.

 

[Clarinda3]

I too follow your posts @Dutchman. What comes across to me is your deep love for Bridget. My wish for you is that you show yourself the same love and compassion. Forgive me if I have overstepped here. I am a relative newbie. My husband left home just over a year ago. At that stage he didn’t know who I was but I couldn’t really see that. It took the past year for me to accept that my husband has lost the past 40 years of his life. He has no recollection of our 30 years together. He doesn’t know who I am but I know who he is. We continue to show each other how much we love each other albeit from different perspectives. He is mad about me and wants to marry me and have a baby. I love him with all my heart and have reached a depth of understanding I didn’t know I was capable of. I have read your posts identifying with your feelings of heartbreak ?. You share the good and the bad and it has helped me on my own journey. I try very hard to live alongside my husband’s Alzheimer’s now because we both lived in it for so many years. I am humbled by how involved you are in Bridget’s life. How you see yourself as anything other than caring and devoted is beyond me. I mean that with the utmost kindness and respect.

 

[canary]

Hi @Clarinda3 . I think it is so touching that although your husband has lost 40 years of his life and cannot remember your life together, he wants to marry you and have a baby. It shows that the love is still there.
xx

 

[Clarinda3]

Hi @Clarinda3 . I think it is so touching that although your husband has lost 40 years of his life and cannot remember your life together, he wants to marry you and have a baby. It shows that the love is still there.
xx

Hi @canary yes it’s so touching. When we were out for lunch yesterday I looked across at him and thought ‘he is so lovely’. It’s just great to have arrived at a place where I can think that without feeling all of the loss and regret. This forum has been invaluable to me. I read here ‘Love is not love that alters when it alteration finds’. I had never come across that Shakespeare quote before and it stuck with me.

 

[Dutchman]

I too follow your posts @Dutchman. What comes across to me is your deep love for Bridget. My wish for you is that you show yourself the same love and compassion. Forgive me if I have overstepped here. I am a relative newbie. My husband left home just over a year ago. At that stage he didn’t know who I was but I couldn’t really see that. It took the past year for me to accept that my husband has lost the past 40 years of his life. He has no recollection of our 30 years together. He doesn’t know who I am but I know who he is. We continue to show each other how much we love each other albeit from different perspectives. He is mad about me and wants to marry me and have a baby. I love him with all my heart and have reached a depth of understanding I didn’t know I was capable of. I have read your posts identifying with your feelings of heartbreak ?. You share the good and the bad and it has helped me on my own journey. I try very hard to live alongside my husband’s Alzheimer’s now because we both lived in it for so many years. I am humbled by how involved you are in Bridget’s life. How you see yourself as anything other than caring and devoted is beyond me. I mean that with the utmost kindness and respect.

Thank you @Clarinda3 for those kind comments. I’ve probably said this before but I’ve never considered myself doing anything very special, just getting on with the business of loving her. Don’t get me wrong, there’s been time when at home back in 2019 I wanted to just be rid of her as it was so bad. But she’s dreadfully ill and it wasn’t long till I appreciated how ill. Now I feel a mixture of sadness for her, a need to fold in my arms against the world and I feel useless that I couldn’t protect her as a man should.

I’ve kept diaries back as far as 2013 and can pinpoint the odd occasion where just something wasn’t quite right. But we skim over these things for the sake of an easy life until you can ignore it no longer.

Thanks for taking the time to respond. I pleased that your husband ( name?) wants that intimate connection with you. Must make you feel special all over again.
Bless you. Peter

 

[Dutchman]

Another weekend.

I was altering the kitchen around yesterday just trying to create more space by getting rid of stuff I never use. And the guilt creeps in that I’m going behind her back and making it into a one person not two person kitchen. It stops me dead and there I go again missing her, remembering her cooking, collecting all the stuff a good meal. I miss this so much.

So I sit down with a coffee and cry. I think at that moment if God could grant me a wish it would be this: that she comes home, I make our bedroom really cozy, we lie wrapped in each other’s arms, she’s content and then we pass away together.

Is life for living? I’m not so sure anymore. I’m miserable most days because I miss her so much and Bridget struggles with double incontinence, can’t make herself understood, stuck in a care home, rarely goes outside because she feels the cold and leads a very diminished life.

 

[Andy54]

@Dutchman , I often find myself wondering how D feels about her life in the care home, from what you have said she would appear to be about the same stage as Bridget. Whenever I see her she does however seem quite contented and calm, this contrasts with the last year she was at home when she was often agitated, afraid and clearly distressed. So is her life diminished? I don't really know but it does appear to be easier for her in many ways, I'll cling to that small crumb of consolation. As to the emptiness of life without her I don't have an answer to that, not sure I ever will. The only thing I can say is that I feel I must stay strong for her sake, to remember all the things that she was that I loved about her - if I don't keep those memories alive who will.

 

[Dutchman]

@Dutchman , I often find myself wondering how D feels about her life in the care home, from what you have said she would appear to be about the same stage as Bridget. Whenever I see her she does however seem quite contented and calm, this contrasts with the last year she was at home when she was often agitated, afraid and clearly distressed. So is her life diminished? I don't really know but it does appear to be easier for her in many ways, I'll cling to that small crumb of consolation. As to the emptiness of life without her I don't have an answer to that, not sure I ever will. The only thing I can say is that I feel I must stay strong for her sake, to remember all the things that she was that I loved about her - if I don't keep those memories alive who will.

Thanks @Andy54. I guess there’s little we can keeping saying that alters much. I keep going over and over all the horrible stuff before she went into the home and I’m glad that the home can deal with incontinence, the need to get a doctor in and someone to monitor her constantly if required. I know I couldn’t do this myself or I fool myself Ito thinking I could but then realise I’d last no time at all.

I just sometimes I could be more level headed about it all but there’s nobody here to sit me down and just talk it through. And when I do meet people and they ask after Bridget I soon realise that Bridget is all I have to talk about. Bridget occupies most of my thoughts and I dread becoming boring because people will start to avoid me. They’re kind but there is a limit.
But there’s no alternative for me. Bridget is everything and I can’t replace that.

 

[Dutchman]

I came back this morning from seeing some people and the minute I get back in I feel isolated and lonely with a feeling of emptiness. But I compare this with the years when Bridget was at home and we did very little during the day but the little we did do we did together.

Funny how expectations are low as a couple and when you find yourself on your own you start comparing what others are doing , or not. I suppose it boils down to companionship in any shape or form.

 

[Dutchman]

I’m using this thread but I know there’s one called “family” but for the moment I’ll use this one.

Family, who needs them!! Again Bridget’s son has put his visit on hold. Some lame excuse about his daughter’s needing to go to a party. I’ve rescheduled for another two weeks. If I insist I’ll have a sulking teenager here for a couple of days. It’s all so obvious that he doesn’t want to come ( one visit on 2 years ) and I understand from the family thread that family visits are rare and if Bridget didn’t have me she’d have no one.

Oh, we have so much to do, our little family unit is so busy, don’t let nasty care homes intrude into our comfortable lives, mums looked after so why should I bother. I mean, give me strength!

Why should I care? But I do.

 

[canary]

It is very sad when family dont visit. My brother visited mum when she first moved into her care home and then never visited again in the whole three years she was there - not even when she was at end of life.
He just couldnt cope with seeing his mum as she was then and it frightened him (not that he would have admitted it!), so he never went.

 

[Dutchman]

What annoys me is that it was all planned for a visit this weekend and then the parents bow to the pressure of the daughter whining that she wants to go to this party. And I’m expected to alter my time to accommodate this. So little parental backbone.

But on the other hand if they had of insisted the child would be sulking and moping around and I can’t be doing with that. If they cancel again I’ll realise that it’s just another excuse and they can shove it. Better they want to come than be here with on sufferance. Bridget deserves better than that from her son.

 

[canary]

But on the other hand if they had of insisted the child would be sulking and moping around and I can’t be doing with that. If they cancel again I’ll realise that it’s just another excuse and they can shove it. Better they want to come than be here with on sufferance. Bridget deserves better than that from her son.

Thats probably the best way of looking at it
xx

 

[CAL Y]

It is very sad when family dont visit. My brother visited mum when she first moved into her care home and then never visited again in the whole three years she was there - not even when she was at end of life.
He just couldnt cope with seeing his mum as she was then and it frightened him (not that he would have admitted it!), so he never went.

@canary . It makes me so angry when I hear about people like your brother.
He couldn’t cope ? He was frightened?
How does he think you were feeling.

One day he might have to deal with something awful happening to someone even closer or even to himself.
It just makes me want to say to him “Grow up and grow a pair.??