Bereavement

[plum]

Oh, another sad event came your way :=(. Sending more hugs to you, my friend!

And you are so right about dying and death not being discussed! Should be another big thread here on the forum: how to die without anxiety, fear and pain.

I feel this is such an important topic.

On a practical front, given that I’ve spent the last month dealing with the estate, I’ve come to have a very high regard for Swedish Death Cleaning. (I have an audio book called ‘The Gentle Art of Swedish Death Cleaning’ by Margareta Magnusson). It’s basically sorting out all your stuff so that once your gone it’s very easy for those left behind to let your stuff go. I think it would help emotionally too.

But certainly, to die with dignity, grace and peace is beautiful.

 

[plum]

Hi Plum,

I am glad to hear from you. It seems like you've been through a lot. I am sorry.

I feel the emotional suffering we have is worse than TMS itself, and hearing your story I can feel the depth of your inner work right now.

In my experience, the regret about what I did in relationship to those passed is really unbearable. You used the word perfectionism, and I guess that's a good call. It seems there is no way to "take the bad away" from the situation. The imperfect way I've treated others cannot be 'undone' and it sticks in my craw. Yet the identification of being "less than," deficient, not enough ----this is a familiar experience of the ego for me. Like an inner flavor which is looking for evidence and confirmation from the outside. Seen this way, I might help myself to see that whatever regret and guilt I have is part of a long-standing pattern. Something which I hope I can see through and not always identify with.

So I want to recognize with you the depth of work which I imagine is arising.

For me there can often be complete release from those identifications, but the ego is tenacious and prefers a familiar, deficient, guilty ID. It does not actually perceive the truth in a situation like this. It sees what it wants to see.

In this, I wish us both kindness to ourselves, and I wish for us the kind of understanding we often give others, and I mean by that what I've seen in you over the years. May we know this loving nature which is us! I believe this to be our deeper truth. And the loving caretaker in us is a reflection of this truth too. Perhaps not "true and perfect," but an action which embodies our loving nature as best it can. May you know your loving self.

Andy

Andy, this is a beautiful reply and one I’ve taken to heart. I see that long-standing pattern you identify within myself too. It’s lost a lot of force over the years, as I’ve gently worked on my self-esteem and belief that who I am is simply enough but it has been rattled by her passing and by other losses and what I guess one could call anticipatory grief.

I mentioned one of my brother-in-laws who has late stage dementia. After my mother-in-law died my husband contacted his other brother from whom we’d been estranged for the last three years only to learn he has terminal cancer. His prognosis is that he’ll die in September. As you can imagine my husband is reeling but all things considered, coping incredibly well. At the wake his whole family showed him immense love and compassion and that kindness has made a difference. Old wounds healed. Stuff from the past forgiven.

For my part, yes…much deep and inner work. Thank you for seeing and honouring this. My husband will talk openly about such things but most people around me seem more stoic and less inclined towards shadowy explorations. ‘‘Twas ever thus.

May we know our loving natures and our loving selves is an exquisite place to rest for now.

Bless you x

 

[BloodMoon]

Aye. My brother-in-law has been moved from his nursing home of three years via hospital to a new place that specialises in the late stages of dementia (he’s a casualty of the lockdown accelerating his condition, like so many, too many souls). It’s a long way from us and we’re musing on whether or not to go and see him one last time. I saw his son at yesterday’s funeral and the poor lad openly broke down when I spoke to him about his dad.

There is no right or wrong decision about this imho. My experience, and that of a friend of mine whose mum also had dementia, is that although it can be upsetting, we didn't regret visiting even though our respective mums didn't remember we'd been to see them. While I was there my mum did sometimes recognise me as being her daughter, but she couldn't remember my name, and my friend's mum thought she was one of the nurses. After my visits the care home staff talked to my mum about me and she told them that she hadn't seem me for years. In the late stages of dementia I'm not sure how much difference it really/actually makes to them, but in the moments where, for instance, I held my mum's hand or gently stroked her face, I could see that she liked and appreciated the attention and tenderness.

Should you decide to visit I would suggest asking the staff when your BIL is likely to be in his room. I say this because my dad had a very distressing experience when he visited my mum when she was first in the nursing home. She was sitting in an armchair in a communal lounge with others who also had dementia and when she saw him she immediately started shouting "I want to go home!" over and over again and then all of the other residents chimed in aggressively shouting that they too wanted to go home. He said it was like a scene from the film One Flew Over the Cuckoo's Nest. I learned that it is typical for people with dementia, with Alzheimer's in particular, to keep saying "I want to go home" and that, even when they are taken home, they say the same thing because they don't recognise their last residence as being 'home'...they are often wanting to go to their childhood home or to where they lived when they first got married or whatever.

I wish dying and death were more openly discussed and acknowledged. It’s almost a cultural taboo. Some people are wonderful but I’m astonished at the number of adults who still metaphorically cross the road rather than speak to you. That has to be a major TMS bugaboo.

Yes, I too think it should be more openly discussed. With my mum no doctor or nurse caring for her would tell me how long they thought she had left. I had to look up the stages of death on the Internet to understand her behaviour. She kept reaching up as if to pick apples from a tree, so I thought she was probably hallucinating and her breathing was becoming noisy. The article I found helped allay my concerns that she might be in pain and suffering and gave me an idea of when she might pass, so that I could prepare my dad. It comes to something when you have to rely on the Internet to find out these things. I was in the same boat as @Baseball65 when he says, "No one prepared me for that, I was largely alone, and I only could do what I could do with the tools I had."

I am glad to hear that you now have a garden. When you sit in your garden and your mind strays from the present to the past (as our 'monkey' minds more than tend to do!) try to remember the plethora of good things that you have done for people.

 

[Cap'n Spanky]

That's like the Ringling Bros. Barnum and Bailey circus of TMS.

I nominate this for quote of the week!

 

[plum]

There is no right or wrong decision about this imho…In the late stages of dementia I'm not sure how much difference it really/actually makes to them, but in the moments where, for instance, I held my mum's hand or gently stroked her face, I could see that she liked and appreciated the attention and tenderness.

This chimes perfectly with what my BIL’s son said to me. He spent quite a bit of time with his dad while he was in hospital and he noticed how oftentimes his dad would try to smile or acknowledge his presence. The poor sweet soul is at the point where he can no longer talk so these subtle non-verbal cues are all we have. His son did say he knew his dad was still in there somewhere and so these moments matter. I’d like to see him but the nursing home is on the east coast so a long drive from our Midlands town, doable but wearing for my husband. I’m going to let him decide I think.

Should you decide to visit I would suggest asking the staff when your BIL is likely to be in his room. I say this because my dad had a very distressing experience…I learned that it is typical for people with dementia, with Alzheimer's in particular, to keep saying "I want to go home" and that, even when they are taken home, they say the same thing because they don't recognise their last residence as being 'home'...they are often wanting to go to their childhood home or to where they lived when they first got married or whatever.

Oh your poor dad. I can’t imagine how distressing and heartbreaking that must have been yet I am very grateful you mention this. During the first couple of years he was in his first nursing home, we would speak to him on the phone and he always talked about wanting to go home. I had absolutely no idea this was a common thing and I’ve just told my husband about it, which has given him a measure of comfort. My husband used to get quite upset by it and frequently spoke of bringing his brother to a place nearer to us and his roots. But now you have given me the wider context and I’m heartened to reflect on how those conversations often moved into happy reminiscence and singing! He did like to sing on the phone (my husband is a singer and they shared a great passion for music).

Yes, I too think it should be more openly discussed. With my mum no doctor or nurse caring for her would tell me how long they thought she had left. I had to look up the stages of death on the Internet to understand her behaviour. She kept reaching up as if to pick apples from a tree, so I thought she was probably hallucinating and her breathing was becoming noisy.

I truly feel for you and have to say my experience echoes this exactly. I don’t understand why this is the case. It only makes everything harder. I’m reading about the stages at the moment.

When my grandmother was dying, my dad spent a lot of time with her and she was insistent that there were birds in her room. She would only calm down if my dad went through the pretence of catching and releasing them.

The article I found helped allay my concerns that she might be in pain and suffering and gave me an idea of when she might pass, so that I could prepare my dad. It comes to something when you have to rely on the Internet to find out these things. I was in the same boat as @Baseball65 when he says, "No one prepared me for that, I was largely alone, and I only could do what I could do with the tools I had."

Sadly this is how I am learning about what to expect. I tried to talk to someone at his new home and they have promised to add me to the family updates (via WhatsApp) but thus far I’ve heard nothing. I do know he’s bed bound although they have dressed and taken him outside to enjoy some nature (which he would do). He’s been fed so no IV (yet). And while he can’t talk, he can be quite vocal (I heard him screaming in the hospital, dear Lord that was upsetting). So I don’t think he has long but as you so painfully note, the reluctance to talk about what is happening leaves you completely in the dark and feeling helpless (which you are anyway but it helps to have some bearings).

I hope you don’t mind me talking about this with you because your words in this thread have really helped. Most people either shrug, express some sympathy and quickly move on to something more comfortable or close the subject down immediately. Yes, it’s uncomfortable and frightening but it’s happening and pretending it isn’t helps no one, especially the sufferer themselves. So thank you for your generosity in this regard. It means a lot.

I am glad to hear that you now have a garden. When you sit in your garden and your mind strays from the present to the past (as our 'monkey' minds more than tend to do!) try to remember the plethora of good things that you have done for people.

Bless you
That is so kind. I believe the garden is going to be my favourite place and sanctuary.

 

[plum]

Oh, hon, that is some shit storm you are weathering. Sending loving kindness.

How goes with you sweetheart?
Is life being kinder?

I pray so. Let me know x

 

[plum]

Hugs and positive vibes to you Plum. Remember, you will be okay. Xo

Thank you honey. Are you alright? xx

 

[plum]

Plum, you have been the most amazing, warm, loving and kind contributor and I just want to let you know that I am sending warm vibes of love, peace and healing to you!

I feel those beautiful vibes, thank you so much. I send you oodles of love in return xx

 

[Andy Bayliss]

I love reading this thread, seeing the kind support offered here for each other. Kindness exists, and I am grateful.

 

[yb44]

How goes with you sweetheart?
Is life being kinder?

I pray so. Let me know x

The lockdowns have been hard. I have struggled with isolation. I am still kicking about nevertheless. Thank you for asking. So glad you are moving to a house with a garden.

 

[plum]

The lockdowns have been hard. I have struggled with isolation. I am still kicking about nevertheless. Thank you for asking. So glad you are moving to a house with a garden.

But we’re still standing and that’s good. Fall down five times, rise up six and all that. It’s true, even if we have to lie there a while feeling like shit.

The lockdowns have been tough. We’ve been shielding for the most part, in a blooming flat, which was ok during the warmer months but not so much during Winter. However I had himself for company so I do feel for you and I hope you’re fairing better in the opening up of the world.

Sending you love x

 

[BloodMoon]

During the first couple of years he was in his first nursing home, we would speak to him on the phone and he always talked about wanting to go home. I had absolutely no idea this was a common thing and I’ve just told my husband about it, which has given him a measure of comfort. My husband used to get quite upset by it and frequently spoke of bringing his brother to a place nearer to us and his roots. But now you have given me the wider context and I’m heartened to reflect on how those conversations often moved into happy reminiscence and singing! He did like to sing on the phone (my husband is a singer and they shared a great passion for music).

I'm glad that this has helped your husband. After my mum died there was a TV programme that followed a chap whose wife had dementia and was in a nursing home, and when he visited her (on a daily basis) she always asked him when she was going to go home. At first he used to try to explain to her that it was in her best interests to be where she was with the nice nursing staff looking after her etc., but then he realised that she got far less stressed if he said "we'll think about going home later" and then quickly changed the subject to something she enjoyed. So, imo your husband did the right thing to move on to singing with his brother over the phone.

I do know he’s bed bound although they have dressed and taken him outside to enjoy some nature (which he would do). He’s been fed so no IV (yet).

With my mum they didn't IV hydrate her, so that might not happen with your BIL. This website explains the pros and cons of it https://www.verywellhealth.com/iv-fluids-for-hydration-in-advanced-dementia-98214 (Should You Ask for IV Fluids for a Loved One With Late-Stage Dementia?). They didn't feed my mum through a feeding tube either which concerned me, but then I found out (by yet another Internet search as no one would discuss it with me because I wasn't next of kin) that the NICE policy is not to use feeding tubes with patients with severe dementia for a number of reasons as explained in this pdf https://www.nice.org.uk/guidance/ng...-dementia-patient-decision-aid-pdf-4852697007. Towards the end my mum wouldn't eat, so they gave her Fortisip Compact (small highly fortified milk shake type meal replacements) and she would only sip a little water through a straw. They moistened her mouth and lips with flavoured swabs because she was drinking very little.

I hope you don’t mind me talking about this with you because your words in this thread have really helped...So thank you for your generosity in this regard. It means a lot.

Not at all. I'm happy to try and help. I can't profess to be an expert on dementia and end of life care, but PM me any time if you think I might be able to help. Other than that, the Alzheimer's Society have a really good forum; the folks on there helped me a lot.

On a practical front, given that I’ve spent the last month dealing with the estate, I’ve come to have a very high regard for Swedish Death Cleaning. (I have an audio book called ‘The Gentle Art of Swedish Death Cleaning’ by Margareta Magnusson). It’s basically sorting out all your stuff so that once your gone it’s very easy for those left behind to let your stuff go. I think it would help emotionally too.

I absolutely agree with this. Something that I also wish my mum had done was make a Lasting Power of Attorney (at least the financial type, if not also the health and welfare one). It didn't come to it, but I thought that I was going to have apply to the Court of Protection to be able to manage her affairs as my dad wasn't up to it, and when you have to go to the Court of Protection it is so very much more onerous and arduous because you have to be supervised by them.

 

[Baseball65]

I totally forgot about "I am going home today " or "I want to go home".

I got very little information when I was watching my Mom disintegrate slowly with dementia. Maybe if I had known how normal that 'take me home' thing is I would have done better. That's is exactly what I meant when I told Plum that we do the best we can with what we have at that moment. I got very frustrated with her for saying that, more than once.

The last few years of my Mom's life, even though she was 'high functioning' , she said it more and more often. Not knowing any better, I used to answer the statement. "Mom...this IS home". "Your home is here now."...."That house you used to live in isn't ours anymore". This would have been such a better answer:

"we'll think about going home later"

She tried to 'make a break for home' twice and both times ended up in the emergency room. I won't belabor the details, but it was a big dramatic deal both times. A cop warned me after the second time that the govt. might stick their nose in if it happened again and I had to reverse all of the locks in the house...made me feel like a jailer rather than a care giver... but I didn't know what else to do. I had to go to work. I had to buy groceries. I felt horrible about it at the time.

The 'mistake' I made was, I kept talking to her like HER and she wasn't HER anymore. She was like a child. She spoke of her childhood nonstop and acted like one and wanted to be treated like one. She did Not know who I was (ever for the last year+) and many normal things were not normal. She thought I was 'the man ' who took care of 'this place' she was at... My GF at the time used to help me a lot with her (angel) and my Mom tried to set us up together as a couple (LOL)

"you know that man who works here is a really nice guy... maybe you guys could go on a date?"

The one thing I DID learn from the whole experience is that I would never want to live through that(as the sufferer) It's probably a topic for another thread.

This is one of the few good things about the internet...being able to share information about specific topics...and this one is important.

 

[BloodMoon]

The last few years of my Mom's life, even though she was 'high functioning' , she said it more and more often.

When my mum was in hospital after falling in the middle of the night and breaking her wrist and vomiting for some unexplained reason, a nurse called my then 91 year old dad in to deal with her because she wouldn't stop yelling that she wanted to go home. When he got there she was physically violent towards him (it was surprising the strength she had at that time, despite seeming pretty frail) and she shouted that if he wasn't going to take her home, she wanted him to take her to a hotel. He said he would take her to a hotel, but asked her who was going to cook her meals there...and that quietened her down for a while. After that I believe the doctors decided to 'chemical cosh' her with pain killers to keep her quiet as she didn't stop sleeping from then on. In the end she did get her wish to live in what amounted to a small hotel-like room in the nursing home. It was a modern building and all the rooms had en-suite bathrooms and when in her room she never said she wanted to go home; however, in the hospital wards and the nursing home's communal lounge she frequently said it.

She tried to 'make a break for home' twice and both times ended up in the emergency room. I won't belabor the details, but it was a big dramatic deal both times. A cop warned me after the second time that the govt. might stick their nose in if it happened again and I had to reverse all of the locks in the house...made me feel like a jailer rather than a care giver... but I didn't know what else to do. I had to go to work. I had to buy groceries. I felt horrible about it at the time.

For some reason my mum didn't go wandering; plenty do though, to include my dad's next door neighbour. The neighbour had Alzheimer's and was picked up by the police as someone reported her waiting at a bus stop wearing just her nightie and slippers in the depth of winter. Her daughter was like you, she had to go to work and do the shopping etc., so her mum had to be locked in most of the day, with a carer coming in just once a day to give her her lunch and medications.

The 'mistake' I made was, I kept talking to her like HER and she wasn't HER anymore.

Me too. And it took me a hell of a long time to realise that often it was best just to go along with what my mum was saying (in situations where it really didn't matter) and tell the odd white lie or two to make her feel satisfied and happy. My mum died at the age of 88, but I really lost her much earlier than that -- when she was around the age 80. She went from being a junior school teacher who was always spick and span in her appearance, to looking like a homeless 'bag lady' as we couldn't get her to wash and she hated her clothes being washed.

The one thing I DID learn from the whole experience is that I would never want to live through that(as the sufferer)

As my mum had dementia and my maternal grandmother had Alzheimer's (early onset in her case) it terrifies me that I might go the same way. I don't know that that fear is responsible for my continued struggles with TMS or not, but I guess it's not beyond the realms.

It's probably a topic for another thread.
This is one of the few good things about the internet...being able to share information about specific topics...and this one is important.

I couldn't agree more!

 

[plum]

@BloodMoon and @Baseball65

You are both priceless.
Honestly, the insight and love in your words is simply beautiful.

My father-in-law (who passed with vascular dementia almost 20 years ago), was a wanderer. This was partly why he was placed in a home. Poignantly he died in his sleep on the first night. This always struck me as an act of soul.

There’s much to assimilate from your posts and this emotional digestion (combined with the house move) means I may not have chance to respond fully for a couple of days but I want you both to know how much I love you and deeply appreciate your support and sharing of experience. This thread is exquisite. Bless you both x

 

[Ellen]

The lockdowns have been hard. I have struggled with isolation. I am still kicking about nevertheless. Thank you for asking. So glad you are moving to a house with a garden.

Hi yb44,
I live alone, am retired, and the isolation has gotten to me as well. I seem to use all this free time to remember every mistake I've ever made in astonishing detail. Humbling to say the least. It's hard to find hope that things are going to improve, but I've now managed to analyze every thought I've ever had and every action I've ever taken. This is what happens to a retired therapist who no longer has clients to think about.

 

[yb44]

Hi yb44,
I seem to use all this free time to remember every mistake I've ever made in astonishing detail.

Oh how I can so relate to this! If I do manage to forget anything, my 99 year old mother reminds me. Yup, nothing wrong with her mental capacity.

I felt sheer terror when my marriage was ending that I would be totally on my own. Even I, a champion catastrophiser, hadn’t envisioned this particular scenario.

Retirement is another hot topic that could use its own thread. Must be a double whammy with the pandemic. Hugs to you, @Ellen.

 

[plum]

I can hardly believe I’m writing this but this morning my mum finally received a diagnosis (after years of being quite poorly). She has early onset Mixed Dementia, elements of both Alzheimer’s and Vascular Dementia.

I’m emotionally punch drunk.
Very sad. Not surprised, maybe even relieved to know at last. Mostly stunned that so much is happening at the moment. This is life. It’s just life.

 

[BloodMoon]

I'm so sorry to hear your news, Plum. Even when you already realise in your heart of hearts that things aren't right, I know it can still hit hard.

With early onset dementia, I think there may be drugs that can slow things down, but you will probably already know more about that than I do, as my mum refused to go for any of the tests, so I never got to know what kind of dementia she had and she therefore never got any treatment for it.

Now your mum has a diagnosis it will be easier dealing with doctors, nurses, other medical staff, and hospital and local authority social workers with regard to her care (if not now, later on), especially with regard to things like NHS Continuing Healthcare and other care assessments. Because my mum didn't have a diagnosis, social workers in particular treated her situation as if she had full mental capacity; they were such a nightmare to deal with tbh (I was shocked).

I'm about to go out and have my first covid jab this afternoon and so I don't know how I shall be feeling afterwards, but reply to this or PM me if there's anything that you think I might be able to help with and I'll get back to you when I feel up to it.

 

[plum]

I'm about to go out and have my first covid jab this afternoon and so I don't know how I shall be feeling afterwards, but reply to this or PM me if there's anything that you think I might be able to help with and I'll get back to you when I feel up to it.

Thank you my love.
I hope the Covid jab goes well. Mine was absolutely fine but I know a couple of people who weren’t too well after. Best to rest and see how it goes.

I’m quietly assimilating and moving yet more boxes today so I’ll probably be offline somewhat so please don’t worry about replying to me. We can catch up in a couple of days. Much love xx