Dementia’s journey

[Shedrech]

hi @Dutchman
speak with the staff rather than the man himself... you don't know his background and it's important that the atmosphere within the home is kept stable for all the residents ... you wouldn't, I'm sure. want a resident's relative having a 'private word' with your wife ... the residents can't control their responses,; those around them are still able to do so
your wife's reaction sounds to me like an extension of hostess mode ie be friendly to visitors ... you are a given in her life so hostess mode doesn't come into play; actually that's a (backhanded) compliment

 

[Violet Jane]

Dutchman, your wife is not responsible for her behaviour; her brain is severely damaged and she lacks awareness and insight. You, however, do have insight and awareness and it would be entirely inappropriate for you to have a 'private word' with this man and, effectively, warn him off. If this man is behaving in a sexual way or harassing your wife that is a different matter, which you should raise with the home so that they can take any necessary action. I understand that you are a volunteer at the home. Your privileges will be withdrawn if you are seen as threatening a resident or behaving in a way which is construed as an abuse of power over a vulnerable man.

 

[Dutchman]

That’s why I need this forum. Sensible advice. Dementia has affected my way of looking at things dramatically.
I’ll have a word with the home and see what they say.

 

[blackmortimer]

May I add my six penn'orth, @Dutchman? When you speak to the home, which I agree with the others is absolutely the right way to go, keep it light - along the lines of "so and so seems to have taken a shine to Bridget" or maybe vice versa, and see what the response is. The last thing you want to do is to put the home on the defensive and feel in any way threatened - both for Bridget's sake and, ultimately, yours. Good luck and God bless

 

[Violet Jane]

That’s good advice, blackmortimer. After all, nothing has actually happened.

 

[Dutchman]

Like many of us here I so hate the mornings. It reminds me of Bridget’s behaviour first thing and my tiredness trying to navigate the rest of the day. Also, now, it so so quiet,and some would say peaceful ( I call it deafening), that there’s no life in the house. The cat’s fed and asleep and it just me and a house. What’s the point?

I spoke yesterday of this incident at the home and have received good advice from you all which I’ll follow. Don’t worry, I won’t put my foot in it and I’ll be sensitive and sensible. I’m a bloke with protective feelings.

But it makes me think that my relationship with Bridget is now very fragile and I want to cling on to whatever is left of her old self. And that’s hard work. Whenever that relationship is threatened it makes me feel I’m in a unsafe world and I need to feel secure and at peace. It only takes the smallest of things to rock my boat.
So that’s where I’m at today. I suspect we’re all fragile in some way because dementia does that to us. It’s evil, cruel and like a terrible plague that affects everything and everyone it has touched.
Peter

 

[blackmortimer]

I try hard not to think of dementia as a "thing" with any kind of personality since this tends to lead us into a medieval frame of mind - the concept that our loved one has been "taken over" by evil spirits or something similar - and that in turn tends to make us think either (a) that we're in some way responsible or are being punished or (b) that if only we van find the magical incantation (or in modern terms the miracle drug) somehow this occupying entity can be driven out and our loved one returned to "normality" rather like Sleeping Beauty being awoken by the handsome prince's kiss or whatever. Instead I think we have to accept that our loved one has undergone a physical change in the functioning of the brain which, in the present state of medical science, can't be reversed and is no one's fault - not ours, not theirs, certainly not demons'. So, what to do? First accept, second don't blame anyone especially yourself, third do what you can to ensure that they're comfortable, well cared for and free from pain.

Here endeth the lesson - sorry for being a bit pompous but I hope the results of a day off from visiting and thinking things through while doing the housework may help you, @Dutchman and other fellow sufferers trudging along on Dementia's Journey.
God bless all of you.

 

[Dutchman]

No, I think you’re more or less right @blackmortimer. More probably.

it’s very hard to see things in black and white terms though and I react to Bridget’s manner without that clear understanding of how dementia has affected her especially when I’m trying to communicate my love for her. A weakness I have to live with.

God blessing

 

[big l]

Dutchman, sorry, I know, well, here goes - what happened to the counselling? What happened to the little cat? You yourself put these things in place to support you, let them do their job. I feel you are in danger of seeking out, then honing in on happenings that haven't happened and awarding yourself further grief by expecting logical thoughts and behaviour from a person overcome by dementia. Poor woman smiles at some soul and you feel animosity towards both of them. That's very simply a non starter, for your mental health. Be pleased that she can still smile, but accept these smiles aren't given to us exclusively.

 

[kindred]

Peter, when Keith was in the nursing home, there was one e specially beautiful Polish carer. She seemed to like to flirt with him in front of me. He would respond, eyes lighting up, big smile. You can imagine how it felt about this.
On the end I decided that so long as someone could bring him to life like this, it was better than not.
Broke my grieving heart into even smaller pieces.
With love Kindredx

 

[notsogooddtr]

Peter, when Keith was in the nursing home, there was one e specially beautiful Polish carer. She seemed to like to flirt with him in front of me. He would respond, eyes lighting up, big smile. You can imagine how it felt about this.
On the end I decided that so long as someone could bring him to life like this, it was better than not.
Broke my grieving heart into even smaller pieces.
With love Kindredx

So wise Kindred. And so kind. PWD often have little pleasure in their lives, much better if we can allow them to enjoy special moments even if it hurts

 

[kindred]

So wise Kindred. And so kind. PWD often have little pleasure in their lives, much better if we can allow them to enjoy special moments even if it hurts

Oh thank you, thank you with all heart. Kindredx

 

[Violet Jane]

Reading these recent posts has got me asking myself some very difficult and sensitive questions which I hope will not offend if I ask them here.

When should a carer start to let go of a loved one? By that, I meant start to detach physically and emotionally (eg by not visiting as often, not having detailed knowledge of the loved one's day to day life).

Does the relationship end when the dementia reaches a certain stage?

I'm not quite sure why but I think that relationships between spouses / partners are different from those between, say, parents and children.

I can only speak for myself but I know that I started to detach emotionally from my mother as her AD progressed. Towards the end of her life she did not speak, smile or show any indication that she recognised me, and during most of my visits - which required a round trip of at least three hours - she would be asleep. She appeared to have no quality of life at all. Frankly, I was horrified by what had become of her and I know that she would have been horrified too, having had experience of dementia with her own mother. I had to psych myself up before every visit. When she died, after over four years in the care home, what I felt mostly was relief, for her and for me (and for the rest of the family). I felt that she had endured enough and was glad that the indignities that she had suffered were at an end. Did I think that my mother was still my mother as the disease progressed? Yes, in the sense that she was still living and I had certain responsibilities towards her but no in the sense that there was any connection between us.

 

[Dutchman]

Reading these recent posts has got me asking myself some very difficult and sensitive questions which I hope will not offend if I ask them here.

When should a carer start to let go of a loved one? By that, I meant start to detach physically and emotionally (eg by not visiting as often, not having detailed knowledge of the loved one's day to day life).

Does the relationship end when the dementia reaches a certain stage?

I'm not quite sure why but I think that relationships between spouses / partners are different from those between, say, parents and children.

I can only speak for myself but I know that I started to detach emotionally from my mother as her AD progressed. Towards the end of her life she did not speak, smile or show any indication that she recognised me, and during most of my visits - which required a round trip of at least three hours - she would be asleep. She appeared to have no quality of life at all. Frankly, I was horrified by what had become of her and I know that she would have been horrified too, having had experience of dementia with her own mother. I had to psych myself up before every visit. When she died, after over four years in the care home, what I felt mostly was relief, for her and for me (and for the rest of the family). I felt that she had endured enough and was glad that the indignities that she had suffered were at an end. Did I think that my mother was still my mother as the disease progressed? Yes, in the sense that she was still living and I had certain responsibilities towards her but no in the sense that there was any connection between us.

I don’t think I will ever detach emotionally from Bridget. Even if she is completely unable to respond I believe I will love her for her own sake.
I have too much love invested in her to draw back.

just my thoughts

 

[blackmortimer]

I think you make a good point, @Violet Jane . There is a difference between spouses/partners ad other family members. I came to this forum posing the question "is it time to let go?" That was when Margaret transferred from hospital to nursing home and Covid was at its height, effectively preventing visits and I was thinking along the lines she is now well cared fro, I can't do anything useful, can't even visit so is this a time to reevaluate? Even when we were allowed visiting it was only for 2 named relatives and at that time I thought it only right for our 2 adult children to be those named relatives. They could do the visiting, come on to see me and report the situation. Which worked well fora while but the children's visits became less frequent and I realised that given that by this stage their Mother wasn't really the Mother they remembered, they probably preferred to remember as she had been rather than as she was now. So when visiting restrictions were eased and I could start visiting I began to do so partly because we had a wake up call when Margaret's health took a sudden downturn and we had to make a decision to agree to "palliative care only" because we knew Margaret wouldn't have wanted to be transferred to hospital for "investigations" which was the only alternative. Because she had been refusing to eat or drink and the nursing home couldn't force the issue they suggested that we visit at any time and use the visits to get Margaret to at least drink. So, my original question was answered by events - it wasn't time to let go. I was needed and I realised that even though Margaret no longer seems to recognise me, she does respond when I offer her drinks and the "calorie shots" prescribed by the dietitian which substitute for normal meals. As a result the "marbling" to her legs which had been alarming, receded and then vanished, her complexion improved and I was made aware that I was still useful, necessary maybe, so I didn't let go and am grateful I didn't.

On the other side of the coin, because I'm going every day, things are now under an even keel and Margaret is away in a sort of dream-world of her own, I have the feeling that my son and my daughter, particularly the daughter don't want to see their Mother as she now is and are reluctant to visit unless I press the issue which, to be frank, I am reluctant to do, partly because I know how they feel and partly because I would prefer that their memories of their Mother are of the person who was always central to their lives for so many years.

All of which is, I think, a convoluted way of answering your question "Yes and No"!! God bless,

 

[Dutchman]

Peter, when Keith was in the nursing home, there was one e specially beautiful Polish carer. She seemed to like to flirt with him in front of me. He would respond, eyes lighting up, big smile. You can imagine how it felt about this.
On the end I decided that so long as someone could bring him to life like this, it was better than not.
Broke my grieving heart into even smaller pieces.
With love Kindredx

Hello @kindred . I wouldn’t want Bridget to be miserable due to a lack of happy interaction. The staff are mostly bright and cheerful. I suppose it’s that green eyed monster of jealousy that upsets.

I’m her husband, I’m trying to hold on to past feelings (illogical I know) and trying to show love to her every time I go. The smallest thing that intrudes on that makes me uncomfortable and on the defensive.

That’s me, can’t help it

 

[Dutchman]

I’ve kept diaries for a number years right back to 2013 as well as holiday journals we both added to when we went on camping trips.

I find it interesting, in a sad way, to pinpoint when dementia started to have an effect. Back in 2014 I suspect, judging by various little strange behaviours that she displayed. Obviously at the beginning I ignored things putting it down to moods. So it been 5 years of just me living and caring at home and 2 years in the care home.

I still try to see, if by looking at the diary entries, I had any impact at all in the development of her dementia. You can tell me till the cows come home that I didn’t but when I hear in my head her saying “ you’re horrible to me “ and “ I want to leave you”, then I feel she wanted to escape me for how I was treating and had treated her. This is still strong in my mind.
Please forgive this repetition of old worries but it’s constantly on my mind.

 

[Dutchman]

I’m reading a book by Zoe Clark - Coates called Beyond Goodbye. It deals with loss , surviving grief and practical help. One of many books I devour. She says “ I found the only way to survive this was not to torture myself with seeking the answers”. This is what I don’t do - I seek answers to square the circle , to make sense of all this mayhem in my life.

My minds so messed with it all that my dreams are beyond describing. Last night I dreamt I was being executed by electric chair and they wouldn’t get on with it. Another was me asking Bridget to get back into bed for a cuddle but she stomped off in a dementia tantrum. You couldn’t get more extreme if you made it up. It’s fear I suppose. As C S Lewis wrote “ Nothing prepared me for the fact that grief looks so like fear”.

Anyway, I’ll visit today and rest in her company.
God bless - Peter

 

[kindred]

I’m reading a book by Zoe Clark - Coates called Beyond Goodbye. It deals with loss , surviving grief and practical help. One of many books I devour. She says “ I found the only way to survive this was not to torture myself with seeking the answers”. This is what I don’t do - I seek answers to square the circle , to make sense of all this mayhem in my life.

My minds so messed with it all that my dreams are beyond describing. Last night I dreamt I was being executed by electric chair and they wouldn’t get on with it. Another was me asking Bridget to get back into bed for a cuddle but she stomped off in a dementia tantrum. You couldn’t get more extreme if you made it up. It’s fear I suppose. As C S Lewis wrote “ Nothing prepared me for the fact that grief looks so like fear”.

Anyway, I’ll visit today and rest in her company.
God bless - Peter

God bless you too and thank you for the cs Lewis quote, so true. I am afraid of just about everything. Makes life so hard. Kindredx

 

[Violet Jane]

It must be interesting (although sad) to re-read old diaries and journals to see when subtle signs of dementia began to appear in your wife. When I think back there were some oddities and lapses in my mother which I'm pretty sure were early signs of her AD. For example:
-misinterpreting hearty stamping and applause by other pupils for a soloist entering the hall to play in a school concert as hostile rather than supportive (this was very early on)
- apathy on a garden tour when my mother had always been very interested in, and knowledgeable about, plants and gardens
- not remembering to meet me back at a particular place in the Royal Albert Hall after going to the lavatory (I had to search for her in that huge place)
- saying that she did not know how to turn the central heating on after complaining that she was cold
- not remembering to pick my daughter up from somewhere
- not being able to find her way to my daughter's drama class even though I had shown her the route
- not understanding that her passport had not expired (could not understand that because the expiry year was 2012 it was still in date although it was April which was after January)
- getting so agitated at the airport about a journey to Belfast that she had done multiple times that she had to be put in a wheelchair (when she was perfectly fit) and accompanied to the plane

I explained these things away or got annoyed with my mother. It did not occur to me that these might be early signs of dementia. I was slow to face up to the situation until things had become quite unsatisfactory. If my brother and sister had not been living abroad at the time perhaps we would have got together and recognised that my mother had a problem earlier.

Another way of tracking my mother's decline is to remember how her journey to and from our home required more and more involvement by us (eg walking her to the station at our end, dropping her off at Kings Cross station for her journey to her home town) until, eventually, she could not make the journey at all.

It is the inability to problem solve at even a basic level which is a red flag for me.

Peter, I can't see that anything that you did or said accelerated your wife's decline. She has an illness which has its own trajectory in terms of progression. Try not to torture yourself. The changes in the very early stages are often subtle and not recognisable to anyone who does not already have an intimate knowledge of dementia and, therefore, the person can seem moody, anxious, self-absorbed, 'selfish' 'lazy', neglectful of his or her personal appearance and hygiene or unaccountably 'stupid'; clear evidence of actual memory problems may not be apparent. If the person lives with a partner the partner may, without realising it, do more / take over / prompt or remind and the problems are masked to some or a large extent until the changes in behaviour become too great to ignore or explain away. People who live alone can't really cope with the demands of day-to-day life and can become extremely anxious even when the dementia is at an early stage.