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Dementia’s journey

Old Flopsy

Registered User
Sep 12, 2019
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Hi @blackmortimer - yes I realise they may no want the body- if there has been a post mortem they certainly don't. OH signed documentation years ago - but that may be irrelevant now. I have visited today for a few hours and he has perked up! Maybe shelve the issues for a later date.
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
I’ve made arrangements to see a someone regarding Bridget’s funeral preparations next Friday. They offer all sorts ranging from normal to woodland in a shroud. Might as well talk about mine at the same time.

Bridget fell again but this time it was a bit of a stumble rather than a nose drive into the carpet. She’s ok. That’s the problem now she’s walking again! My family is descending on me soon so I’ll have 8 more people staying. They’ll be a welcome distraction and take up the slack with the visiting.

Bridget’s very stubborn when it comes to meal times and doesn’t want to sit still so it’s a struggle having the meal together as I’m constantly pushing her back in her seat. Add the staff saying to others “ open your mouth” and “ please don’t do that” and coughing and sneezing, well, meal time aren’t that relaxed.

This all reinforces the fact that I couldn’t do this at home even with help. Bridget needs a team of staff around her all the time and it reminds me of her agitation wanting to escape here. I’m fooling myself repeatedly wishing her at home with me - a fools dream. I’d be on my knees in a week.🥵

Peter
 

blackmortimer

Registered User
Jan 2, 2021
285
0
Glad to hear you're seeing a funeral person, @Dutchman . i think you'll find it helpful. They do seem to offer an unexpectedly wide range of choices, which is good particularly when there are options you might not even have thought of.

I had a call from the nursing home yesterday which caused some consternation. They said the GP had been in to see Margaret and had stopped all her medication on the basis that it was becoming increasingly difficult to get her to comply and caused her distress. More troublingly, the GP has prescribed injections (I think of morphine or similar) to be used as and when necessary for pain/distress relief and they still have oral morphine for her when she has difficulty swallowing. She doesn't seem to be eating much, though she had had some soup and a spoonful or two of a liquid fruit dessert, which is something I suppose.

Anyway I'm visiting later this morning so hopefully will get a better idea. I must say I'm full of trepidation as to what I will find. My son's coming up from London this afternoon, staying overnight and visiting Margaret tomorrow on his way home. Hopefully my daughter may come too so I shall have some support. I need it just now.

God bless
 

Dutchman

Registered User
May 26, 2017
1,452
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73
Devon, Totnes
Hello @blackmortimer. My thoughts are with now knowing that Margaret is finding it difficult to swallow. Any change in the ability to eat is a worry. Please keep me up to date on developments.
I know exactly how it feels to worry as , like you, I’ve had plenty of practice. I’m glad your son and daughter can be there to support and comfort you at this awful time.

Without being actually with you I can’t do much more than giving you a virtual arm round your shoulder and just sit there with you.

Peter
 

blackmortimer

Registered User
Jan 2, 2021
285
0
Hello @blackmortimer. My thoughts are with now knowing that Margaret is finding it difficult to swallow. Any change in the ability to eat is a worry. Please keep me up to date on developments.
I know exactly how it feels to worry as , like you, I’ve had plenty of practice. I’m glad your son and daughter can be there to support and comfort you at this awful time.

Without being actually with you I can’t do much more than giving you a virtual arm round your shoulder and just sit there with you.

Peter
Thanks for that, @Dutchman . I need it. Just back from the nursing home. Margaret was still in bed, didn't seem to recognise me, just lay there half asleep occasionally muttering something unintelligible. I tried a bit of conversation mentioning names that she would instantly recognise once upon a time but drew a blank. She seems to have withdrawn into a world of dementia far far away. She's not eating very much but they do keep her hydrated which is a positive. She's lost a lot of weight. I honestly don't know how long she's got with us and neither do the nurses - it depends on how strong her system is - but I've got the distinct impression that it won't be very long so I've got to steel myself. Anyway my son is en route (stuck in traffic on the M11) and he should be here soon. He's going to visit Margaret tomorrow morning. My daughter will meet him there and then come on to see me. I'm blessed to have them both and all the friendly souls on this forum. You've certainly helped me through it. God bless you all.
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
Thanks for that, @Dutchman . I need it. Just back from the nursing home. Margaret was still in bed, didn't seem to recognise me, just lay there half asleep occasionally muttering something unintelligible. I tried a bit of conversation mentioning names that she would instantly recognise once upon a time but drew a blank. She seems to have withdrawn into a world of dementia far far away. She's not eating very much but they do keep her hydrated which is a positive. She's lost a lot of weight. I honestly don't know how long she's got with us and neither do the nurses - it depends on how strong her system is - but I've got the distinct impression that it won't be very long so I've got to steel myself. Anyway my son is en route (stuck in traffic on the M11) and he should be here soon. He's going to visit Margaret tomorrow morning. My daughter will meet him there and then come on to see me. I'm blessed to have them both and all the friendly souls on this forum. You've certainly helped me through it. God bless you all.
Hello @blackmortimer. My prayers are with you right now.
There’s probably nothing I can say that will lessen your distress at this moment. Words cannot do this level of grief justice. But as you go through this I will keep you in my thoughts all the time. I trust you will be supported by your children.
Keep posting as much as you can - anytime.

Love to you brother. Peter❤️
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
Hello @blackmortimer. My prayers are with you right now.
There’s probably nothing I can say that will lessen your distress at this moment. Words cannot do this level of grief justice. But as you go through this I will keep you in my thoughts all the time. I trust you will be supported by your children.
Keep posting as much as you can - anytime.

Love to you brother. Peter❤️
How’s it going @blackmortimer ?
 

blackmortimer

Registered User
Jan 2, 2021
285
0
Thanks for your concern, @Dutchman. I had a reasonably good evening with my son. Very grateful that he stayed over, Gave us time to talk things over and kept me from too much self-pity. Now he's gone off to the nursing home where he's meeting my daughter. Then he's going back to London and she''s coming on to see me, which is something to look forward to. She'll be able to bring me up to date on Margaret's condition. I'm hoping there might be some improvement but, realistically, don't really expect it. So all in all with the help of the children and, may I say, your help I'm just about hanging on. Will post again later.

God bless and thanks again
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
Thanks for your concern, @Dutchman. I had a reasonably good evening with my son. Very grateful that he stayed over, Gave us time to talk things over and kept me from too much self-pity. Now he's gone off to the nursing home where he's meeting my daughter. Then he's going back to London and she''s coming on to see me, which is something to look forward to. She'll be able to bring me up to date on Margaret's condition. I'm hoping there might be some improvement but, realistically, don't really expect it. So all in all with the help of the children and, may I say, your help I'm just about hanging on. Will post again later.

God bless and thanks again
Ok. Just keep me in the picture as best you can, when you want. Great that your daughter will be with you.
🙏❤️
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
I’m full of family in the house now ( 12 people) and all I can think about is how Bridget used to love big family gatherings. I’ve had to go upstairs to just look at her picture and talk to her and say how much I miss her.

I feel the family are obviously aware of her absence and are doing their best to just make things seem normal. I just feel awkward and need her back on the sofa playing with the children ( happy days).

Poor Bridget, so much life lost .
 

blackmortimer

Registered User
Jan 2, 2021
285
0
That's dementia, isn't it, @Dutchman? Tears the heart out of everything. Whenever we have any kind of family gathering there's always a Margaret sized hole in the proceedings so I know how you must feel.

My daughter's gone back to the Smoke. Although it was something of a flying visit I appreciated it none the less. She reports that Margaret was slightly (reading between the lines very slightly) better than I had found her yesterday, but was pretty incoherent, although my daughter thought there was a glimmer of recognition which is more than I detected. They had a useful chat with the nurse in charge who said what happens next is determined by how long Margaret holds out physically but because she scarcely eats anything that may not be a great while. All still depressing but I'd sooner they be candid rather than raise false hope.

I feel a little better than I did this time yesterday, probably because I've been able to talk it through and start the process of coming to terms with it.

Thanks for your on going support. It means a lot.
God bless
 

cumbria35

Registered User
Apr 24, 2017
80
0
I just want to take this opportunity to praise care homes. I went in early to Bridget’s home yesterday to drop some new clothes off before they got her dressed. They were very busy getting people up, personal care, and handover from the night before but they still had time for me and my concerns.

Later they phoned me to tell me how good she looked in her new clothes and they’d taken some pictures.

I miss my Bridget very much, and life is so much less without her, at least she’s cared for and valued in the home and it’s a comfort. I have to say that as my life alone is now the normal I feel at times very strange and awkward about it. It’s almost like me and Bridget never happened.

Three years of dementia behaviour and two years in the care home have affected my memories. All these years of Bridget not really loving and caring for me so I don’t remember what it what like to be loved by her day by day.

I had a dream last night where I was with someone else in a loving married relationship. No one I could identify. It was so real. Shows I crave this affection and I feel guilty for even dreaming it. I need Bridget in my dream and it’s impossible and like holding water.

Peter
 

cumbria35

Registered User
Apr 24, 2017
80
0
Your feelings are very much like mine, I dream but about my husband being with me. Will never get used to being on my own at home and I too feel desperate to visit but they are in Isolation at the moment and even before that we had to have an appointment. It is such a distressing situation even after twelve months to watch a loved one decline in such a way. What have we all done to deserve such a life, he was such a kind loving person.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
Thanks for that, @Dutchman . I need it. Just back from the nursing home. Margaret was still in bed, didn't seem to recognise me, just lay there half asleep occasionally muttering something unintelligible. I tried a bit of conversation mentioning names that she would instantly recognise once upon a time but drew a blank. She seems to have withdrawn into a world of dementia far far away. She's not eating very much but they do keep her hydrated which is a positive. She's lost a lot of weight. I honestly don't know how long she's got with us and neither do the nurses - it depends on how strong her system is - but I've got the distinct impression that it won't be very long so I've got to steel myself. Anyway my son is en route (stuck in traffic on the M11) and he should be here soon. He's going to visit Margaret tomorrow morning. My daughter will meet him there and then come on to see me. I'm blessed to have them both and all the friendly souls on this forum. You've certainly helped me through it. God bless you all.
It’s such a difficult time watching a loved one go through this stage. My Dad did & I remember the gut punching grief I experienced, I truly thought I’d be more prepared for the emotional turmoil when Mum went through this. Sadly not. All I can say is I know now that this is part of the natural process. To quote a lovely old fashioned phrase & probably not very PC “ Mum is away with the fairies”. The lack of recognition doesn’t distress me as much as it used to, I sit & smooth her hair or just rest my hand on her arm . Knowing I am there & radiating love is enough. I don’t talk unless Mum looks at me & tries to engage, her poor brain needs to rest as much as it can. Single words & limited vocabulary mean careful listening to attempt to understand the meaning behind. Reassurance & smiles , softly spoken are the best form of love I can provide. I blow kisses to say goodbye, if I’m lucky Mum might mirror me blowing a kiss back, a smile & blowing a kiss & im walking on air. Sadly those times become less, but knowing that I sit quietly beside a loved one resting my hand gently against them is the only way I can now show my love.
Noise distresses Mum, so I sit & read a book via Libby the library app. I make sure I am doused in my perfume so my scent reassures. There are soo many ways of showing love & I have learnt how to except that just being there is enough. Mum has no idea who I am, but sitting with her must resonate somewhere within as I make her feel safe & she sleeps. I am her person. It’s all I can now do & I have to accept that that is enough. Unconditional love. I hope my words might bring some solace to you at some point. It is enough if Mum opens her eyes & makes eye contact. Remember the eyes are the window to the souls & treasure those moments & smile , your loved one will mirror your expression. All I can be is the best version of me at that moment in time.
 

blackmortimer

Registered User
Jan 2, 2021
285
0
Thank you for those thoughts, @DesperateofDevon . It was something I needed to hear. After so long caring for Margaret at home it has become a sort of reflex reaction to have to do something whereas just being there is enough. Very wise words which I shall try to act on at my next visit. Thank you again.

God bless
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
Thank you for those thoughts, @DesperateofDevon . It was something I needed to hear. After so long caring for Margaret at home it has become a sort of reflex reaction to have to do something whereas just being there is enough. Very wise words which I shall try to act on at my next visit. Thank you again.

God bless
Oh bless you. My mum is a Margaret as well & is 90 at the end of the month. A whole generation of Margaret’s
Mum is further down her dementia journey - & now in hospital. By having the recent experience of Dad in a care home & his passing, & now Mum in hospital close to the end of her dementia journey I focus on my loved one having a peaceful transition. Sadly it’s the natural conclusion. Acceptance of this is a painful process for those who love the person on this dementia journey. Each day we loose a little more of the person we love & look for the smallest glimmer of hope. It’s hard to remember at times that dementia is a terminal illness, but accepting that fact & equating it to other more understood terminal illnesses has helped myself come to terms with some aspects.
All we the family , friends , carers can do is just be there; quiet & calm with a ready smile & a reassuring touch.

please don’t think I’ve got this situation in anyway sorted though -
I feel awful guilt as if I’ve let my loved ones down in some way . I know I haven’t but it’s in my nature to sort things out , rectify. This situation is not possible to sort or rectify & I am a passenger on my loved ones dementia journey .
Our past relationship with our loved one is prominent in our mind , meanwhile our current relationship bears no resemblance to that past. A sad fact we cannot change & have to come to terms with. Acceptance of this is heartbreakingly hard.

Personally I am the sort of person that needs to understand the intricate details of a situation. It helps me cope having that knowledge. We all deal with stress & situations in our own personal ways. Has having had an understanding of a disease made any difference to my loved ones experience - it has helped me become empathetic to the needs of the person on the dementia journey.
What ever makes this dementia journey easier for you to support your loved one as they reach the natural conclusion , that is all you can do.
Unconditional love is all the advice I can give, & it’s one of the hardest things to do.
Please know that you are never alone in this journey , the folks on this forum are all at differing stages on this journey through life. We all have different experiences & opinions.
The most helpful thing I found after Dad had passed & as Mum declines is the support of an Admiral Nurse. I can say anything & vent my anguish & frustrations without being judged. My family can see the difference that having this support has made, it’s a positive impact.
Each day I look forward in direction , not an easy thing. Each day i approach as being a blank page & it’s one of the hardest things I have ever done in my life. The support network of folks on forums , friends is needed by myself more than ever. I have made & make many mistakes, emotion overflows at times . That’s when I need to step back - again such a difficult thing to do.
Accepting that my loved one won’t remember if I visited 5 mins, 5hours , or the previous day has broken pieces of me repeatedly. The only way I can rationalise what my loved one is experiencing is by remembering when I felt soo poorly that all I did was sleep; not wanting people talking to me constantly . Just knowing that when I opened my eyes a friendly face with smiling eyes full of love was there sometimes.
Apologies for rambling on - but by sharing my own journey it might help another in some way.
You are held in a cocoon of support on this forum , this disease / illness bonds us together a unique journey for each one of us tied together by a common thread.
sending hugs xx
 

Dutchman

Registered User
May 26, 2017
1,452
0
73
Devon, Totnes
Hello @DesperateofDevon
Thanks for the post - I’m surrounded at the moment by the whole family taking a few days here as a visit and mini holiday. They’re watching Love Island ( don’t bother) and I’m angry that no one is even referring to their mum or my sadness.
Bridget would have been very vocal at this level of “don’t care” and I’m holding it in as best I can.

I appreciate that we can’t continue 24/7 with grief as that wouldn’t get me anywhere but a small gesture or remark would be nice to show that, at least, they recognise what I’m going through.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,242
0
Hello @DesperateofDevon
Thanks for the post - I’m surrounded at the moment by the whole family taking a few days here as a visit and mini holiday. They’re watching Love Island ( don’t bother) and I’m angry that no one is even referring to their mum or my sadness.
Bridget would have been very vocal at this level of “don’t care” and I’m holding it in as best I can.

I appreciate that we can’t continue 24/7 with grief as that wouldn’t get me anywhere but a small gesture or remark would be nice to show that, at least, they recognise what I’m going through.
It’s hard to accept we all have different ways of coping . Many family arguments have occurred & occur because I am struggling & every part of me aches with sadness.
Talking to my family without emotions boiling to the surface is hard. Please know that just by your family being with you is their way of supporting you. We might feel we need more from our loved ones, but can our loved ones realistically give us what we need?
Dealing with the complexity of life & emotions is hard enough, throw into this dementia a terminal disease. I personally have asked more from my family emotionally than they are able to give. My family want comfort & stability from a parent a wife, yet I want the comfort from the loss of a mother - I am the child losing my parent.
For you the loss of your marital relationship your wife, you are asking for that comfort & understanding. Your family can only understand their own emotional experiences & how they cope.
Perhaps talking to other spouses/ life partners who have similar experiences will enable you to receive the empathy & understanding. Please don’t think this is a cop out, far from it . I have friends who are “widowed “, suffered that bereavement & I listen to them talking to others experiencing the same. Honestly my own personal loss & experience of emotions doesn’t equate to these folks that have lost their partner, soul mate, husband , wife.
is this because i lack empathy, understanding or compassion ? No I just haven’t experienced that unique & life defining moment. All I was able to do when my Dad traveled the dementia journey & passed was be there for my Mum.
My Mum has never shed a year at Dads passing - her grief is soo much she’s cannot process it & now on her own dementia journey those memories are lost.
From a child’s perspective - I wanted my Mum & Dad to be my Mum & Dad. They have always been those who had experienced more of life’s ups & downs , twists & turns. As I cope with my own grief at losing Dad & now my Mum is at End of life I realise that I need to be that child again- I need to be just the daughter. It’s hard to explain - I need to sit & give my Mum that unconditional love a child shows it’s mother; make precious memories to treasure.
I cannot bear to look at photos , the pain of what I have lost is too much to bare. If I lid the lid on my emotions they spill over uncontrollably the grief of loss & losing is so intense.
My own husband cannot bare to see me torn apart , neither can my children who are adults in their own right. They want to fix , make it better; fix the unfixable .
My daughter talks about her own grief, my heart breaks for her & I want to stop her pain. I can’t , this is life & we are all heading towards this natural conclusion.
The guilt of living when a loved one is slowly fading away is a burden I deal with daily. Yet now at rock bottom emotionally , physically & mentally I look up & see that life continues around me. How to cope with your world disintegrating ? for me I garden & cook. I find gardening & cooking a way of demonstrating my love for my family .
When grief overwhelms me I push my family away as I cannot bear the physical contact knowing that if the lid is removed I am left so bereft that I cannot function, the pain so intense I cannot breathe. It’s easier to be angry at life, family , others & it’s less painful physically & mentally.
To love so deeply is a blessing & at time of loss a curse. Understanding these complex emotions doesn’t make dealing with the emotion any easier….. we are all trying to cope & deal with deeply personal complex emotions.
So my lovely , the only advice I have is be kinder to yourself. It’s one of the hardest things I’ve ever tried to do. Life continues no matter what, & as a mother I want my children to live their lives to the best of their ability. I want them to laugh with joy at my memory. A mother’s relationship with her children, a nurturing loving relationship that children are coming to terms with of losing .
I have no solution to how to deal with loss, but am able to have moments of clarity unclouded by emotion of the complexity of each persons situation .
I hope you find solace in some of these words . I my self everyday try to be kinder to myself & provide unconditional love to my nearest & dearest ; honestly I fail daily at some point but again I have to say right clean slate & try again !
Does it get easier , a little, do I feel guilty for doing so - a lot. This is the reality of life & I cannot change it but find my own pathways to cope hour to hour .
Thoughts with you all x
 

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