Bereavement

[Ellen]

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.

So sorry that you are having to deal with this news on top of everything else. A friend of mine's husband received the same diagnosis recently, and while difficult to hear, it was a relief to finally know what was going on. The diagnosis also opened up a menu of services available in the community from a day program, transportation, and support groups for caregivers. I hope you find the support you need to care for her in the coming years.

 

[Duggit]

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

I know what you mean, Baseball. When dealing with my late mother's Alzheimer's more than a quarter of a century ago, I would say to my wife after a particular bad episode, "I hope MY body does not outlive MY mind." That was for two reasons. I don't ever want to suffer like she did, and I don't want my kids ever to see me behave like that.

It's probably a topic for another thread.

Agreed, but I want to mention that there is available a healthcare directive that enables a person to specify the levels of medical care he or she desires through the three stages (mild, moderate, and severe) of Alzheimer's. The choices available at each stage are: (1) To live for as long as I can, (2) To receive treatments to prolong my life, but if my heart stops beating or I can't breath on my own, I would not want my heart shocked to restart it and I would not want to be put on a breathing machine, (3) To only receive care in the place where I am living. I do not want to go to the hospital even if I were very ill, and I would not want to be resuscitated, (4) To receive comfort-oriented care only, focused on relieving my suffering such as pain, anxiety, or breathlessness; I would not want any care that would keep me alive longer. Here is the link to the form:

https://static1.squarespace.com/sta...f87698d1/1623530793274/dementia-directive.pdf

I suppose one might rationally choose different levels of care at the different stages. Unfortunately, I don't think my wife has the cognitive wherewithal to complete such a directive even though her Alzheimer's probably is late mild stage or early moderate stage, so I suppose the lesson is not to wait too long.

 

[BloodMoon]

I know what you mean, Baseball. When dealing with my late mother's Alzheimer's more than a quarter of a century ago, I would say to my wife after a particular bad episode, "I hope MY body does not outlive MY mind." That was for two reasons. I don't ever want to suffer like she did, and I don't want my kids ever to see me behave like that.

Agreed, but I want to mention that there is available a healthcare directive that enables a person to specify the levels of medical care he or she desires through the three stages (mild, moderate, and severe) of Alzheimer's. The choices available at each stage are: (1) To live for as long as I can, (2) To receive treatments to prolong my life, but if my heart stops beating or I can't breath on my own, I would not want my heart shocked to restart it and I would not want to be put on a breathing machine, (3) To only receive care in the place where I am living. I do not want to go to the hospital even if I were very ill, and I would not want to be resuscitated, (4) To receive comfort-oriented care only, focused on relieving my suffering such as pain, anxiety, or breathlessness; I would not want any care that would keep me alive longer. Here is the link to the form:

https://static1.squarespace.com/sta...f87698d1/1623530793274/dementia-directive.pdf

I suppose one might rationally choose different levels of care at the different stages. Unfortunately, I don't think my wife has the cognitive wherewithal to complete such a directive even though her Alzheimer's probably is late mild stage or early moderate stage, so I suppose the lesson is not to wait too long.

Such good advice! And for anyone in the UK there are similar things that can be done: an 'Advance Decision' or a 'Health and Welfare Lasting Power of Attorney' can be made https://www.alzheimers.org.uk/get-support/legal-financial/advance-decisions-dementia (Advance decisions and dementia) and there's also a financial 'Property and Affairs Lasting Power of Attorney' https://www.alzheimers.org.uk/get-support/legal-financial/lasting-power-attorney#content-start (How a Lasting power of attorney can help if you have dementia).

It may not be too late for someone to make a valid Lasting Power of Attorney etc., even if they have been diagnosed with dementia. I'm not sure what the position would be in the US, but here in the UK, as long as a solicitor or someone else able to be a so called "certificate provider" believes that the person knows what they are signing, and they are willing to witness/sign the forms, it's valid https://www.liftedcare.com/when-is-it-too-late-to-set-up-a-power-of-attorney/. With LPAs the "certificate provider" needs to be someone with relevant professional skills, such as a doctor or lawyer or has known the person well for at least two years, such as a friend or colleague...

So, I'd say look into it asap -- if you haven't already done so -- in the hope that it may still be possible, as it could save so much hassle in the future. (My 93 year old dad decided to do an 'Advance Decision' and a 'Property and Affairs Lasting Power of Attorney' nominating me and my husband as attorneys when he saw how difficult it was for me to deal with my mum/his wife's affairs without these documents.)

 

[TG957]

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.

My dear @plum, my heart is breaking for you and your Mom :=(. At least you have certainty and clarity now. Just one day at a time.

Scary future awaits so many of us.... I dread to even go back in memories to what was happening around my father during his last 2 years, full of dementia, paranoia and fear. It has been my long-time hope to somehow die before my brain quits...

Wish you patience, strength and courage.

TG

 

[plum]

Ah my friends, it saddens me to hear how many of us have been touched by dementia. On a more positive note I am encouraged by the boons of creating a sensory garden. My dad has a beautiful garden and adding some of these therapeutic elements to it will benefit both him and my mum. I’m certainly going to embrace these things in my inherited garden.

https://lakesidemanor.org/dementia-gardens-help-people-alzheimers-dementia/ (Dementia Gardens | How They Help Alzheimer's & Dementia Patients)

 

[LaughingKat]

Dear Plum,

I wanted to say, though belatedly, that I'm very sorry for your recent losses and the shocks. I wish you peace and sweet memories. I'm glad you have the companionship of your husband, and he has you.

I don't know you, but your presence here has changed my life for the better. You're in my thoughts. I'm wishing you comfort and pleasure to mix in with the grief and stress.

Kathy

 

[plum]

Dear Plum,

I wanted to say, though belatedly, that I'm very sorry for your recent losses and the shocks. I wish you peace and sweet memories. I'm glad you have the companionship of your husband, and he has you.

I don't know you, but your presence here has changed my life for the better. You're in my thoughts. I'm wishing you comfort and pleasure to mix in with the grief and stress.

Kathy

Bless your heart Kathy , I needed some kindness today and your words are a balm. Thank you so much for them. They feel like a gentle and much needed hug.

All the sifting and sorting of stuff has been emotionally discombobulating and I had a rough time yesterday. Such is grief but there are some sweet moments such as earlier today when we walked to the top end of our garden (which I am keeping wild), and we disturbed an army of tiny frogs. They are totally adorable and it makes my heart glad to see these little lives flourishing. The circle of life…

plum xxx

 

[Colly]

Dear Plum

I am so sorry for all you are going through at the moment. I haven't been on the forum much of late, but have always loved your wonderful words of encouragement and wisdom on this forum.

It's almost comforting to read this thread. I have felt like I've been travelling a lonely road myself. I returned to Dublin in September 2019, after a carefree and successful life in Australia for almost 30 years. I decided to return to be around for my mother primarily, but my Dad is the one taking up a lot of that time now. My Dad was diagnosed with PPA Alzheimer's in March 2018 and now his condition is quite advanced. Both Mam and Dad are 84 and my mother retreats to her bedroom to be away from the stress of being his primary carer. My decision to leave for Australia years ago was primarily to be away from my Dad (an angry father who scared me as a child, leaving me resentful and bitter towards him in adulthood). I worked through this resentment as part of my own TMS recovery journey, but now back in Dublin I'm faced with renewed bitterness towards him, having been a bully to my mother all these years to now be a burden to her with this condition. There's so much more to all this shit storm, but just reading this thread has been like a warm hug.

You do so much for your loved ones. To be on the receiving end of your care and support would be such a precious gift. Please try to go easy on yourself and as "selfish" as this sounds, please take time out to care for you, without any guilt. Your TMS kicking up a storm is a clear sign that you really need to pull back and care for you.

Bless you for all you do for others, both near to you and on this forum. Now check in on that inner child within you that needs your care. xxx

 

[HattieNC]

I've been away from the forum for a few weeks and was saddened to read of your struggles Plum. It sounds like you could use some of the grace, forgiveness, and self-care you so kindly and enthusiastically bestow to others.

My husband and I were part-time caregivers for aging parents for almost two decades while trying to live a "normal" life (kids, grandkids, running a business). We were FAR from perfect and made a lot of mistakes. I remember some of the posts about the difficulties you had with your MIL. I think in our desire to remember the good about someone, we tend to forget the bad and difficult aspects of their personalities. Then, we start to feel guilt and regret because we have sainted them. You've been a gift to your spouse, this forum, and I'm sure to your MIL. You've also been a gift to me.

 

[Lizzy]

Plum, you and your husband are in my thoughts. You are going through a lot of things right now! I’m so glad you are able to receive such fantastic support from so many people that hold you in great regard. You are beloved and grand.

I haven’t been on the forum much in the last year. Oddly enough I was too TMSy and fragile. However, I have been much better after working with someone from the Pain Psychology Center.

(as my very dear grandmother used to sign her cards) Oodles of Love, Lizzy

 

[mugwump]

May you have the courage this week to begin breaking patterns in your life that no longer serve you. Give yourself permission to pause and reflect today. And remember, taking care of yourself doesn't mean "me first" it means "me too". -Happiness is an inside job.

 

[plum]

My dear friends, I’m incredibly heartened to come back and see your warm and kind words. I’m finally actually moving house in a fortnight (was beginning to think the house clearance would never end. It’s a sisophean task to be sure). However once done, I intend to have a good rest, read a lot and start swimming again. There is hope!

Dear Plum

I am so sorry for all you are going through at the moment. I haven't been on the forum much of late, but have always loved your wonderful words of encouragement and wisdom on this forum.

It's almost comforting to read this thread. I have felt like I've been travelling a lonely road myself. I returned to Dublin in September 2019, after a carefree and successful life in Australia for almost 30 years. I decided to return to be around for my mother primarily, but my Dad is the one taking up a lot of that time now. My Dad was diagnosed with PPA Alzheimer's in March 2018 and now his condition is quite advanced. Both Mam and Dad are 84 and my mother retreats to her bedroom to be away from the stress of being his primary carer. My decision to leave for Australia years ago was primarily to be away from my Dad (an angry father who scared me as a child, leaving me resentful and bitter towards him in adulthood). I worked through this resentment as part of my own TMS recovery journey, but now back in Dublin I'm faced with renewed bitterness towards him, having been a bully to my mother all these years to now be a burden to her with this condition. There's so much more to all this shit storm, but just reading this thread has been like a warm hug.

You do so much for your loved ones. To be on the receiving end of your care and support would be such a precious gift. Please try to go easy on yourself and as "selfish" as this sounds, please take time out to care for you, without any guilt. Your TMS kicking up a storm is a clear sign that you really need to pull back and care for you.

Bless you for all you do for others, both near to you and on this forum. Now check in on that inner child within you that needs your care. xxx

Oh sweetheart, I feel so much for you. This is such a challenging emotional crucible to find yourself in and I hope you are able to find the love and support you need. These can be wretchedly lonely journeys and sometimes I’ve found even the lighter moments drag guilt in their wake; for example I was somewhat estranged from my mother-in-law (the lockdowns concealed this a bit) and there is a measure of relief to the end of her penchant to cause endless arguments in the family by her gossip and manipulation…and yet my husband is heartbroken and I ache for him. At the moment I’m simply too busy to dwell on it much but I think post house move these considerations will raise an ugly little head.

As for house moves, I’m only moving down the road, your move is mind blowing. Kudos to you for supporting your mum in the face of such a brutal situation. I hope you post here sometimes, just to check in and let us show you the love you share in abundance. It’s clear that a good many of us are currently tussling with or have dealt with dementia in a loved one and it’s pure gold to be able to discuss the many and varied stresses of this with people who not only understand dementia but also the oddities and wonders of TMS.

Thank you for your kindness and reply to me. You warmed my heart and made my soul feel seen. God bless my darling. xxx

I've been away from the forum for a few weeks and was saddened to read of your struggles Plum. It sounds like you could use some of the grace, forgiveness, and self-care you so kindly and enthusiastically bestow to others.

My husband and I were part-time caregivers for aging parents for almost two decades while trying to live a "normal" life (kids, grandkids, running a business). We were FAR from perfect and made a lot of mistakes. I remember some of the posts about the difficulties you had with your MIL. I think in our desire to remember the good about someone, we tend to forget the bad and difficult aspects of their personalities. Then, we start to feel guilt and regret because we have sainted them. You've been a gift to your spouse, this forum, and I'm sure to your MIL. You've also been a gift to me.

Thank you Hattie, you are ever kind to me. I’m grateful that you flag the guilt and regret because I have suffered from a strong element of self-reproach. You remember well the challenges I had with the MIL, god love her. As if ageing parents aren’t enough of a worry!

I do hope life is being kind to you. Do let me know how you are. Much love. xxx

Plum, you and your husband are in my thoughts. You are going through a lot of things right now! I’m so glad you are able to receive such fantastic support from so many people that hold you in great regard. You are beloved and grand.

I haven’t been on the forum much in the last year. Oddly enough I was too TMSy and fragile. However, I have been much better after working with someone from the Pain Psychology Center.

(as my very dear grandmother used to sign her cards) Oodles of Love, Lizzy

Sweet Lizzy, I am sorry to hear you’ve been suffering. TMSy and fragile pretty much sums it up here too! (Although I have just come from a much-needed checkup at the dentist and am hugely relieved that all is well. I’ve been in a state).

I’m very glad to hear you’re feeling better now. This last 18 months has been so wearing that it’s little wonder we’re feeling delicate. I listened to an Alan Gordon podcast the other night and reflected upon what a godsend he and his colleagues are.

During the house clearance I found a birthday card that my dear nana had sent to my husband. I’d forgotten how lovely and totally unique her handwriting was and in my mind I read her words in the beloved Yorkshire accent she had. She used to call us Honey (‘unny) and your oodles of love reminded me of that.

oodles of love to you too my dear.
Take good care xxx

May you have the courage this week to begin breaking patterns in your life that no longer serve you. Give yourself permission to pause and reflect today. And remember, taking care of yourself doesn't mean "me first" it means "me too". -Happiness is an inside job.

Thank you for this sage message. I am viewing this as a fresh start and this does make me happy. Warm hugs xxx

 

[MWsunin12]

Late to the page, but Plum...you have a wonderful heart. Your mother-in-law was on her own journey. I truly believe that people pass away, even in accidents, when their time on earth is over for them.

And, I feel pretty strongly that all of our human concerns and sorrow dissipate and become nothing when we leave these bodies.

In the meantime, I hope you feel better day by day. You're very loved on this forum.

 

[fredb]

Dear Plum, I am saddened to hear the difficult time you are having with the passing of your mother-in-law, what with everything else you have endured over the years. Please do not reproach yourself over what you consider to be missed opportunities to provide care.
Most of us of a certain age feel the same following the passing of a parent. It is inevitable that we feel we could have done more and now it is to late. I felt that way when both my father and then mother died. You are such a kind and caring person and on the occasions I have sought your guidance, your kind and constructive advice has always helped.
We all struggle on with what life sends us don't we. Let time pass! Good luck to both you and your husband and Godbless you for the goodness you bring to this community. X Fred.

 

[plum]

Late to the page, but Plum...you have a wonderful heart. Your mother-in-law was on her own journey. I truly believe that people pass away, even in accidents, when their time on earth is over for them.

And, I feel pretty strongly that all of our human concerns and sorrow dissipate and become nothing when we leave these bodies.

In the meantime, I hope you feel better day by day. You're very loved on this forum.

Thank you so much angel, I love your thoughts on this. My husband is reading Elizabeth Kubler-Ross at the moment and sometimes he reads an excerpt that spoke true or touched him deeply. A few days ago he told me that he believed his mum was free and fully healed from all the physical and emotional pains of her life, and that she is waiting for him when his time comes.

I’m grateful that you mention that we are all on our own journey. I know my mother-in-law had a brutal upbringing (and she lived through the Second World War), and occasionally she would talk about it. Clearing out all her belongings has given me time to reflect upon it all much more.

I am feeling better, and sometimes I even feel joyful. This year has been one cosmic rug pull after another and in my more peaceful moments I have a strong sense of one door closing as another opens. This new chapter will be good. I can feel it in my bones.

God bless you xxx

 

[plum]

Dear Plum, I am saddened to hear the difficult time you are having with the passing of your mother-in-law, what with everything else you have endured over the years. Please do not reproach yourself over what you consider to be missed opportunities to provide care.
Most of us of a certain age feel the same following the passing of a parent. It is inevitable that we feel we could have done more and now it is to late. I felt that way when both my father and then mother died. You are such a kind and caring person and on the occasions I have sought your guidance, your kind and constructive advice has always helped.
We all struggle on with what life sends us don't we. Let time pass! Good luck to both you and your husband and Godbless you for the goodness you bring to this community. X Fred.

Fred, thank you for your kind words and for softening the self-reproach I feel. I’m both saddened and heartened that you felt like this over your parents passing. I guess it’s entirely natural to experience a maelstrom of emotions and that these settle with time. I’m also sure that people-pleasers are more prone to feel guilt than more selfish individuals.

This too shall pass.
I have always cherished this saying, and I know better days lie ahead.

I pray life is treating you well my dear. Thank you so much for taking time to leave me this message. God bless xx

 

[Cariad]

Dear Plum,

Like so many of us, I haven't been around here for a while, and now I walk in and see what a time you've been going through! Sweet girl, you've had too much on your plate for far too long, by the sound of it! I know your wisdom and experience will be helping you to bear up, but... blimey! Tough times, innit?!

((((Plum))))

From my own experience, losing someone you've had a problematic relationship with can be quite complicated - a little part of you (me) is glad to be released from that source of tension - then the goodist part comes along to guilt-trip you (me!) for that. But it's fair enough, we're not saints. And if people are difficult in life, they can expect a frank appraisal of their performance after their death - that's the bargain we all make!

I think traditionally we were 'duty-bound' to cater to our elders even if they'd caused us pain; and I think we're culturally a bit wiser than that now. I've lost a couple of tartars in the last couple of years, and it helped me not to think about my feelings too much at the time, just get through the practicalities; with a little time and space, I can look back on them honestly, but with a bit of the sting taken out. It's okay.

I also think we can feel a certain relief if someone dies who has been suffering - my rellies were absolutely in a condition of mental and physical decay that I wouldn't want for myself - that I wouldn't permit an animal in my care to endure. And when people have medical needs, it's really for the best sometimes that non-family take over the bulk of care - they can do it as a team, with proper training and facilities, with proper rest and breaks, and without familial emotions getting in the way of decision making, or wearing them out.

Anyway, with that and moving house, you seem to be gutting your way through the Holmes-Rahe Stress Inventory! So I'm sending thoughts and hugs and good wishes to you. This will indeed pass, and all you have to do is be here - this day - this minute - and do what you most need right now, including self-care.

Cariad xxx

 

[Sterling]

Hello everyone,

It’s been a while since I visited here and I pray you’re all hale and hearty.

These last few months have been emotionally ferocious culminating in the death of my Mother-In-Law five weeks ago. Her funeral was this afternoon (a long time between I know, Covid etc…) and I feel the simple human need to touch base with the sweet, kind souls here who implicitly understand the deep and complex layers such transitions bring.

TMS has kicked up a storm. Not helped by the fact that aside from the loss, the hubby and I are moving house (into his mum’s place as it goes) so I’ve been dealing with the estate, the loss, my husband’s Parkinson’s, my mum’s ever increasing decline into ill health… honestly that’s not even the half of it.

I’m surprised that I’m not completely batshit crazy. Any gentle words or soft hugs from afar are welcome. Nothing heroic. Sometimes a “I hear you” is enough.

Much, much love to you all

plum xxx

Dear Plum. Apologies for seeing your post a few months late. The few times I log on, I look for you as I feel a certain affinity to you and your story (post-traumatic trigeminal neuropathy following a badly botched root canal, and a shit ton of life stressors compressed in a very short time, and struggling with the all-or-nothing TMS perspective make up my story). Anyway, I wanted to send my deepest condolences on the loss of your MiL, and positive thoughts that life has settled down somewhat for you. Warmest regards from

 

[plum]

Dear Plum,

Like so many of us, I haven't been around here for a while, and now I walk in and see what a time you've been going through! Sweet girl, you've had too much on your plate for far too long, by the sound of it! I know your wisdom and experience will be helping you to bear up, but... blimey! Tough times, innit?!

((((Plum))))



I think traditionally we were 'duty-bound' to cater to our elders even if they'd caused us pain; and I think we're culturally a bit wiser than that now. I've lost a couple of tartars in the last couple of years, and it helped me not to think about my feelings too much at the time, just get through the practicalities; with a little time and space, I can look back on them honestly, but with a bit of the sting taken out. It's okay.

I also think we can feel a certain relief if someone dies who has been suffering - my rellies were absolutely in a condition of mental and physical decay that I wouldn't want for myself - that I wouldn't permit an animal in my care to endure. And when people have medical needs, it's really for the best sometimes that non-family take over the bulk of care - they can do it as a team, with proper training and facilities, with proper rest and breaks, and without familial emotions getting in the way of decision making, or wearing them out.


Cariad xxx

Cariad

Anyway, with that and moving house, you seem to be gutting your way through the Holmes-Rahe Stress Inventory!

This made me laugh out loud. Thank you for that. We’ve been in for a month now so the settling in has started but the move itself was not pretty. I’m never moving house again. And besides I’m now a froggie mama and these little creatures make my day each time they pop up.

Mostly I want to thank you for penning an incredibly thought provoking and immensely relevant reply. There’s so much I could say and I may share some of those thoughts later but for now I’m grateful that you took the time to share these things. I turn them over often in mind and heart.

And I’m doing better on the self-care front. Last week I went to the pool for the first time in four months and I basically sat in the jacuzzi letting the jets pummell out some of the tension. Absolute bliss!

Heartfelt thanks and much love to you xxx

 

[plum]

Dear Plum. Apologies for seeing your post a few months late. The few times I log on, I look for you as I feel a certain affinity to you and your story (post-traumatic trigeminal neuropathy following a badly botched root canal, and a shit ton of life stressors compressed in a very short time, and struggling with the all-or-nothing TMS perspective make up my story). Anyway, I wanted to send my deepest condolences on the loss of your MiL, and positive thoughts that life has settled down somewhat for you. Warmest regards from

Bless your heart Sterling, kindred spirits do much to soften life’s blows. Thank you for replying and for the good wishes which I gratefully receive. Sending you love and hopes that life is being kinder to you xxx