Hope we can make this board more active

tigersmom

Hello, fellow travelers. DH left this world one month ago, and I am struggling. Both the speed of his departure (seven weeks from first hospital admission to death) and the unexpectedness of it (just over three years since diagnosis) have really leveled me. I have heard from other members of speedy departures after hospitalization or ER visits, and of loved ones who died in just a few years post-diagnosis, but it seems so much not the norm to me. I know so many of you are struggling with long, years-long declines of your loved ones. I did not get that, and while I am happy that my husband is no longer suffering, I am heartbroken for me. I would love to hear from others who have found themselves in a similar situation. How did you cope? DH spent exactly one month in memory care and one week on hospice. I have joined a bereavement group through hospice, which I think will help, but I am so very sad all the time. I am throwing this out there in the hopes that more people will participate in this part of the forum. It seems like so many of us have recently lost our loved one.

ThisLife

@tigersmom I too have hoped this board would get more activity. My DH was ER to departure in 7 weeks. Seven months in MC. But a twelve-year journey. I'm not sure so much about a "norm."

All of us experience extreme challenges. The longer the journey the more often people post as they are revisiting the same issues over and over and over. But the other side to that coin is we've had a real l o n g time to become use to the person no longer being there. Difficult to miss my DH who was a non-participant for the last seven years.

The last year was a blur. I'm just now (7 mos.) remembering some of the person he used to be before Alzheimer's. My grief isn't so acute. I'm more focused on salvaging something of my life before I'm gone. I retired to take care of him 10 years ago.

Ones, such as yourself, had my experience in 3 years on steroids. You didn't even have time to adjust to each loss as they occurred. I'm thinking your journey looked like, "One loss. Recognize it. Oh, never mind, here comes another. What happened? Wait what's happening now!" No time to adjust, just cope. "Heartbroken and struggling" are probably the norm in the face of fast progression.

I've joined a hospice grief group which is mostly spouses. Their spouses were short duration health issues whose decline was fast or chronic health problems that suddenly became acute. But the spouse was still an active participant in the marriage. What they describe is what you are going through.

I feel very little in common with them. My DH was young onset so I'm a decade younger than most. Caring for a spouse for a few months before they passed is nothing like what we experienced. I'm continuing to go; trying to see common ground.

I've read in the other forum but am doing it less and less. I really admire the people who participate to help lift up and advise the ones who are in the midst of caregiving. It causes me a great deal of anxiety, though.

Sending you a measure of peace.

Jackie

tigersmom

Jackie, thank you so much for your reply. My experience with the disease was indeed like grief on steroids, as you so aptly put it, but it sounds like the end came for both our husbands in a very similar manner. My bereavement group is a spousal group; there are three other participants but I’ve only met two. One is a woman who cared for her husband with LBD until the end, so I can definitely relate to her. The other lost his husband in the space of a month to back-to-back strokes. So he has had to deal with the sudden loss, too. I guess the one advantage I have over those who dealt with lengthy disease is that I can still remember the early days post-diagnosis when he wasn’t that bad. But that makes the precipitous decline of his last seven weeks harder to accept. I still wonder how we got there so quickly. Thank you again for your response. It is truly helpful.

CatladyNW

hello Tigersmom and Jackie. I guess that my experience was somewhere in between each of yours. My husband had Parkinson’s disease and Parkinson’s dementia, and it was at least eight years since he was first diagnosed. He passed on October 20. His dementia was different than Alzheimer’s, however, because he was in and out cognitively, and the progression of the dementia was gradual up until the last three months when he really lost touch with reality. The physical disabilities that Parkinson’s imposed, however, were devastating. he had been wheelchair bound for over a year, and lost the ability to swallow and, in the end, to speak at all. He had been in high-level AL for two years, and ended up in memory care in the last few months. But he had anosognosia, and refused to accept the fact that there was anything wrong with him. He thought he could walk, so he would get up out of his wheelchair and attempt to walk and fell repeatedly. He hit his head badly several times, and I am sure this contributed to his confusion and dementia. He fell so many times that he was asked to leave two facilities, causing a crisis each time. In our state, facilities are required to notify whenever there is a fall, and I would get phone calls almost every day and even in the middle of the night. I still jump every time the phone rings, because I always dreaded getting the call that he had hit his head and had a brain bleed. But that is not what happened in the end. He ended up in the ER because of extreme agitation – he kept trying to leave the facility in his wheelchair, and hit and bit any caregiver who tried to stop him. He went on hospice, and they attempted to regulate his medications, but before they got him stabilized, he had an episode of agitation and the facility sent him to the ER. He lay on a gurney in the ER for six days, which was unconscionable, but the hospital would not admit him because they said it was not an acute medical problem. The MC facility where he had been refused to take him back because they said he was a danger to himself and others. I had to find a new facility on short notice, and he never recovered from the ER experience. He was gone in three weeks. I guess at this point none of that matters, but is very hard for me to let go of the events that led to his passing. I didn’t expect him to end that way.

Like Jackie, I can barely remember what life was like before my husband was diagnosed. We had been married for over 30 years when he was first diagnosed, and I know that we were happily married, but I can’t really remember what he was like before the disease. I really want to, but the stress and anxiety of the past two or three years blot out all the happy memories. Now I am struggling with all the arrangements and details that have to be addressed when someone dies. They don’t make it easy for survivors. I am not a group kind of person, so I have not yet joined any kind of bereavement support group. I have worked one on one with a grief counselor for the last couple weeks, and it does help a little. What helps me the most is distraction so I don’t think about him all the time. Nights are the worst, so I have taken to watching Netflix every night. If I can find a show that has lots of episodes, I just binge. I always keep music on during the day so that it occupies a part of my mind at least.

I would really like to see this board to get more activity, too. Those of us who have suffered this kind of loss are the best ones to hold each other up because we understand the stress of caregiving and the pain of watching a loved one deteriorate bit by bit. I hope you both can find some relief from sadness.

tigersmom

@CatladyNW ,my heart breaks for you. To have your loved one lie on a gurney for six days in the ER is unthinkable — or should be, except for the fact that it actually happened to you and your DH. My husband also had anosognosia and walked as if it were the only thing keeping him alive. One week after he arrived at MC, I got the evening phone call that he had fallen, hit his head and was on his way to a local hospital. There were many more calls after that — and he only lived another three weeks. Like your DH, he was extremely agitated at the end and nothing anyone tried seemed to work until he was bedbound and they could give him liquid Ativan. Your loss is so recent — I am a few weeks behind you — and I wish I could tell you it will get better soon. I cry on the streets a lot, walking to all the places in our neighborhood we used to go together. Hang in there and try to take care of yourself as best you can. Think about joining a spousal bereavement group — most hospices offer them. Mine is online on Sunday nights, which suits me fine because I’m still not big on leaving the house except for groceries and to go to the post office. There is so much stuff to mail when you’re closing down a life that my postal clerk knows me pretty well by now. Chances are your bereavement group will include someone who has lived through the dementia experience. Keep posting here, and let’s keep helping each other. I have found that even though I no longer have caretaking problems to solve, i miss coming to this board.

CatladyNW

@tigersmom i took your suggestion and called the Hospice bereavement line. I have an appointment next week and they will fill me in on support groups. I was doing better this weekend and woke up this morning and just started crying and I haven’t been able to stop all day. I have so much to do. I can’t get motivated to any of it. I have to sort through all of my DH’s things from the MC facility and I just can’t look at it right now. Still have to submit the obituary, write thank yous, etc. And pay bills! It will all still be there tomorrow. Did this happen to you too?

ThisLife

@CatladyNW No words will comfort but time makes the pain less acute which is no consolation right now. My loss was in April so a bit longer ago than you both.

The ER experience is truly a trauma. It seems to be a common theme for LOWD. In the spousal grief group I attend, it is true even when the end of life even if it's not dementia. I just tell myself there is probably nothing else could do then and certainly nothing I can do now. I tell myself to leave it in the past. This has gotten easier. Keeping distracted is a coping strategy I use a lot!

All the myriads of tasks that come after can be overwhelming. My son and grandsons helped me pack and remove the stuff form MC the day he passed and put it in the garage. I finally sorted through it in September. It would probably still be sitting there but I wanted to park in the garage. Consider if that is a priority?

My son and I made calls to retirement accounts, long term care company, MC, etc. the day after he passed to get the ball rolling. I still have to deal with the VA but have 12 months to do it. Finally had all the rest completed on September 16th. I kept a notebook with a page for each agency and annotated date, who I talked to, what was said, and then the date and what action I took. Documented the date and every piece of mail I received and sent. Made copies of everything I sent in a large envelop for each agency including documents I received. First two weeks I spent a LOT of time on this. Then I needed to develop the mindset of just waiting for responses. I revisited every two weeks and made calls when there had been no response.

I'm sure if thankyou cards are not sent for a while others will understand. It's early days and will be more manageable later.

You have daily life with its requirements that still goes on. Those are "must do." I had overwhelming inertia the first few months. After about six weeks I set myself one additional task to do they next day. Most days I accomplished that but not every day. This too will become easier over time.

fmb

@ThisLife Thank you for the practical tips on dealing with necessary tasks after the death. Although I am not yet widowed, DH's death is coming soon. I've already begun planning for the aftermath because I know I will be in no fit emotional state to have to think and plan at that time.

tigersmom

@CatladyNW , I had all those experiences. The first week after his death, I made the calls I needed to make immediately (pension board, our trust attorney, his union and professional organizations), then focused all my attention on preparing for his memorial service, which was held two weeks after his death. The second week was consumed by planning the service— writing his obituary, lining up speakers to deliver brief eulogies, supervising the program and memorial cards, planning the light lunch afterward. That and dealing with my out-of-town family moving into my house for a few days. When that was over and everyone went home, I began to deal with all the financial stuff— banks, retirement accounts, brokerage accounts, etc. It took almost two weeks for me to get the certified copies of the death certificates, so that couldn’t have happened any sooner. Altogether, it is overwhelming, so I broke it down into smaller chunks. Every day I made a list of three or four things to do. If they didn’t all get done, they slid to the next day. As I finished them, I checked them off. I took notes any time I was given instructions, and made a list of where each death certificate went, the date, and how it was sent. I got a lot done. Now, like @ThisLife, I am following up on the things that should have happened by now but haven’t. My husband was a doctor, but his last job was working for the City of New York, so wish me luck with them. They have their own timetable, and they don’t care when his RMDs need to be taken. At the beginning of week five after his death (last Friday), I got pretty sick. Tested negative for Covid twice, but it still feels worse than a cold. So I have slacked off a bit this week. The thank-you notes have been written and sent (took me two weeks to finish that) and there are still a few calls I need to make (hello, board of voters). But I have been crying a lot more this week, too. I think I was so busy for a while that now I finally have more time to feel the emptiness. Take your time, make little lists, and it will all get done. Do the stuff for him first — obituary, service planning, etc., and worry about sorting through his possessions later. I brought everything home from memory care a week after he died, and put it all back into his drawers. His slippers went back under the bed. I know he’s not coming home, but that’s just how it has to be for now. I never wanted him to have to live away from me to begin with. And good for you for considering joining a bereavement group. I have only been twice, but I think it is helping.

CatladyNW

thank you @ThisLife and @tigersmom for the encouragement and suggestions on how to organize. I was so glad to read your posts tonight. I had to look something up for the probate attorney and got into the closet with all our old photo albums. I realized that DH had been so changed by his disease for the last five or six years, that I’d forgotten the man with whom I’d spent more than 35 years. Remembering our life from the early years was very sweet but very sad, too. I am hoping that more of those memories will come back in time. Right now I feel like I have PDSD- post dementia stress syndrome. I have been going at a really fast pace for months, dealing with crises and problems, and I somehow felt that I had to get everything done ASAP. I have lots of lists but need to get better organized.

Yes, the financial stuff had to get started. Social security is a nightmare. We both were receiving benefits, and I was told to call SSA immediately which I did. I was told that they stop his payments right away and that I would have to apply for survivor benefits in person or by phone conference. The first available appointment is at the very end of December! His benefits were much larger than mine, so suddenly my income is reduced at a time when I am dealing with funeral bills, etc. The SSA death benefit of $255 is not going go very far. I have the same issue with DH’spension, so have to get right on the application for survivor benefits. Somehow it seems very unfair to have to deal with these kinds of things when you’re at your most vulnerable. I ish I had known some of this beforehand, so I hope this will be helpful to others.

I am trying very hard to stop thinking about the last weeks of DH’s life. The social worker at hospice told me that you can consciously stop yourself from thinking about those days by visualizing a stop sign or just saying no when you find yourself thinking in those circles. Easier said than done, but I’m trying. The hardest time for me is when I first wake up in the morning, and realize that he’s gone. Someone called it morning mourning. I’m sorry everyone else here has been dealing with the same losses, but it really does help to have a place to come and vent and know that there are others who understand.

tigersmom

PDSD— I love it! I have that, too. So sorry to hear about your troubles with Social Security. It is terrible to make someone in your situation wait that long. Covid wrecked that place and they still haven’t fixed it, it seems. I would double down on the pension application and hope for speedier resolution.

Like you, I find that mornings are the worst. I open my eyes and the fact that he’s gone is the first thing that comes to mind. It was the same when he was first diagnosed. Lately I have found some things harder to get through than others. They were very kind at the DMV when I transferred the title to his vehicle, but I still started to cry when they handed me the new registration in my name. He loved that truck so much.
But we keep going. We have no choice. I am wishing you a better day today. I am really sorry I took mostly still pictures of him after diagnosis. A friend sent me a video from last December yesterday and it was so good to hear his voice. We should make a list for the spouses who are still caregiving… things I wish I’d done when he was still with me. It would probably surprise them.

CatladyNW

oh yes! How I wish I had video and had saved more voicemails. I only have one and I listen to it all the time. I don’t even have very many pictures from the last couple of years. I’m ashamed to admit that I hated how the disease made him look and sound, so I didn’t take many photos of those last holidays, birthdays, etc. Now I cherish every bit of him that’s left. His shaving bush has a place of honor in the bathroom. Even though I knew how our story would end, I didn’t understand how empty it would feel when he was finally gone. I guess we all feel that emptiness.

ThisLife

@CatladyNW @tigersmom @fmb I'm so happy to see so many posts here and to see the validation we are able to give each other. And a preview of things to come for someone approaching Stage 8. Very brave, fmb!

For me federal and state pensions and SS. They all stopped immediately. The annuities accrue from the date of death but come as a lump sum back payment after the monthly benefit is determined. Gave me a chance to be grateful that I have my own pension and some savings. Many do not.

PDSD, I feel that. My therapist added PTSD to my diagnosis.

We never owned a video camera. The only video I have is from my DMIL last Mother's Day (cancer) more than 24 years ago. I haven't watched it and probably won't as it also has my youngest son who died 2 years later. Lots of pictures though. I have several voice mails of Steve calling from the psych ward enraged and/or crying that he was there, and I had abandoned him. Haven't listened to those but haven't deleted them yet.

Keep muddling along everyone.

tigersmom

@ThisLife , I’m happy we’re getting something going here, too. I really value the experience of others in stage 8. We don’t own a video camera, either, but I have found that younger people, like my best friend’s daughter and my own younger friends, are much more likely to use the video camera on their smart phones. That’s where my new one came from. Pre-dementia, DH used his a lot to take videos of the cats, which I also really appreciated when they left us. I have only one voicemail from him… a confused “hello” from a call from daycare last summer, when he could hardly use the phone anymore. I still play it a lot. Somehow, hearing his voice is even more comforting than looking at pictures. I’m going to start some new topics here so we can keep this going. Thanks for joining in.

alessandro64

https://alzconnected.org/discussion/71118/hope-we-can-make-this-board-more-active

https://alzconnected.org/discussion/comment/228687#Comment_228687

Mi chiamo Alessandro e anche io mi sono trovato nella tua stessa situazione con mia moglie, deceduta solo ad aprile di quest'anno dopo la diagnosi avvenuta nel novembre 2021 tramite PET e puntura lombare. Ancora adesso non mi capacito della rapidità del decadimento (é vero che soffriva di ipoacusia fin dalla giovane età) ma abbiamo una vita più che regolare per oltre trent'anni. Anche io sento la sua mancanza/assenza quanto torno a casa dopo il lavoro e cerco di ricordare i tanti momenti belli passati insieme volendoci bene come il primo giorno che ci siamo conosciuti. Purtroppo mi ritornano in mente gli ultimi anni infernali vissuti in hospice, stava veramente male ma era già allo stadio 6/7 forse oltre (completamente avulsa dalla realtà circostante). Sto rivedendo e collezionando le molte foto che le ho fatto in questi anni da quando ci siamo conosciuti e poi sposati e non riesco a darmi pace che una persona così empatica ed intelligente possa ridursi così per una malattia il cui inizio è così invisibile (dicono che cominci circa 20 anni prima). A me manca molto e non riesco a volte a rivedere gli stessi posti frequentati con lei che una volta erano così appaganti per entrambi. Penso che il dolore debba essere attraversato senza sconti, ma il solo pensiero di lei mi sembra mi faccia strappare il cuore a mani nude. Ho vissuto con speranza gli ultimi momenti anche se la diagnosi ci aveva uccisi entrambi nell'animo, ma mi sono imposto di restarle accanto anche se mi è costato molto. A volte ho pensato quale colpa io o lei abbiamo commesso per meritarci una così terribile fine. Ci siamo amati contro tutto e tutti, forse questo ci ha reso più isolati e solitari di altre coppie ma la sua cronicità (aveva perso il nervo acustico a causa di un'otite cronica e sentiva solo dall'orecchio destro) ma mi ha permesso di amarla ancora di più. E' questo senso di protezione che mi sta uccidendo, rendendomi conto che non potevo preservarla da tutto e ciò mi ha reso impotente e sconfitto come lo sono oggi. Volevo essere il suo principe azzurro per sempre e sono una persona che considera che l'amore va oltre la morte (il principio "l'acqua disseta ma l'amore guarisce" è sempre stato il mio dogma che mi ha reso resiliente nella vita) ma quello che è capitato a lei - la dolcezza fatta a persona con un cuore grande per tutti - non riesco a mandarlo giù. Forse le persone ci lasciano per sempre - come dice qualcuno - quando hanno esaurito il loro ruolo su questa terra (non siamo immortali lo so) ma perché uccidere la mente e lasciare vivere un corpo senza direzione come in queste malattie neurodegenerative. Ho dovuto allontanare le figlie per cercare di non farle vivere una tale tragedia ma avevano capito cosa aveva colpito la loro mamma. Anche questo mi addolora come tutte le scelte che, all'epoca, ho fatto cercando di alleviare in qualche modo la sua sofferenza continua (allucinazioni, apatia, agitazione senza tregua). Ho dovuto dividermi tra casa e lavoro, visite mediche e fughe da casa senza scopo e penso di essere stato un caregiver con enormi difficoltà. Scopro ora tante cose che forse le avrebbero consentito di "vivere" ancora un pò ma mi domando: era il suo bene che volevo o era solo egoismo per tenerla vicino a me? Ho talmente tanti dubbi che non sto trovando pace, cerco di sopravvivere in qualche modo ma la sua assenza per me è vitale. Tante volte mi rieccheggiano le sue parole e il suo soprannome era "brown eyed girl" - la canzone di Van Morrison - che le piaceva ascoltare e ballare insieme a me. Mi sono sempre sentito responsabile per lei come se Dio mi avesse incaricato di questa responsabilità - ci siamo sposati nella buona e nella cattiva sorte - e abbiamo sempre scherzato su chi dovesse lasciare prima questo mondo. Ora so la risposta e devo dire che non l'accetto senza un perchè. Spero che Dio mi perdoni per averlo in qualche modo sfidato, ma con lei sono stato veramente tanto tanto felice per molteplici motivi. Fin dalla sua infanzia ha vissuto in una famiglia non facile, cercando di farsi amare da tutti, ma purtroppo è stata molto incompresa anche dai suoi stessi genitori. Poi ha incontrato me - anche io sono stato per certi versi introverso come lei - ma ci siamo incastrati alla perfezione e ancora oggi leggo piangendo le sue lettere d'amore che mi scriveva. Poi i lutti e la perdita di speranza (depressione) hanno portato questa creatura a perdersi e a perdere il suo sè. Era la malattia che avanzava e le prime diagnosi alcuni anni fa (neuro-psichiatra) l'hanno uccisa dentro. Ma io le sono rimasto accanto fino alla fine sperando di dare un calcio al barattolo e credendo che la malattia colpisse i giovani ma desse un po di tempo. Niente di tutto ciò è stato vero per me.

Ora ciò che mi rimane sono solo i ricordi e tanta tristezza per ciò che fu e non sarà più.

Alessandro

fmb

(Translated with Google Translate)

My name is Alessandro and I also found myself in the same situation as you with my wife, who died only in April of this year after the diagnosis in November 2021 via PET and lumbar puncture. I still can't understand the speed of the decline (it is true that she suffered from hearing loss from a young age) but we have had a more than regular life for over thirty years. I also miss her/absence when I return home after work and try to remember the many beautiful moments spent together, loving each other as much as the first day we met. Unfortunately, the last hellish years spent in hospice come back to mind, she was really bad but she was already at stage 6/7 maybe beyond (completely detached from the surrounding reality). I am reviewing and collecting the many photos I took of her over the years since we met and then got married and I can't accept that such an empathetic and intelligent person could be reduced to this for a disease whose onset is so invisible (they say it starts about 20 years before). I miss her a lot and sometimes I can't see the same places we frequented with her that were once so fulfilling for both of us. I think that pain must be endured without discounts, but just thinking about her seems to make me tear my heart out with my bare hands. I lived the last moments with hope even though the diagnosis had killed both of us in spirit, but I forced myself to stay by her side even if it cost me a lot. Sometimes I thought about what fault I or she had committed to deserve such a terrible end. We loved each other against everything and everyone, perhaps this made us more isolated and lonely than other couples but her chronicity (she had lost her hearing nerve due to chronic ear infection and could only hear from her right ear) allowed me to love her even more. It is this sense of protection that is killing me, realizing that I could not protect her from everything and this made me helpless and defeated as I am today. I wanted to be her Prince Charming forever and I am a person who considers that love goes beyond death (the principle "water quenches thirst but love heals" has always been my dogma that has made me resilient in life) but what happened to her - the sweetness made by a person with a big heart for everyone - I can't swallow it. Maybe people leave us forever - as someone says - when they have exhausted their role on this earth (we are not immortal I know) but why kill the mind and let a body live without direction like in these neurodegenerative diseases. I had to take my daughters away to try not to let them experience such a tragedy but they understood what had hit their mother. This also pains me like all the choices I made at the time trying to somehow alleviate her continuous suffering (hallucinations, apathy, relentless agitation). I had to split my time between home and work, medical visits and pointless escapes from home and I think I was a caregiver with enormous difficulties. I discover now many things that perhaps would have allowed her to "live" a little longer but I ask myself: was it her good that I wanted or was it just selfishness to keep her close to me? I have so many doubts that I am not finding peace, I try to survive somehow but her absence is vital to me. Many times her words echo in my mind and her nickname was "brown eyed girl" - the song by Van Morrison - that she liked to listen to and dance with me. I always felt responsible for her as if God had entrusted me with this responsibility - we married for better or for worse - and we always joked about who should leave this world first. Now I know the answer and I must say that I do not accept it without a why. I hope that God forgives me for having challenged him in some way, but with her I was truly very very happy for many reasons. Since her childhood she lived in a difficult family, trying to be loved by everyone, but unfortunately she was very misunderstood even by her own parents. Then she met me - I too was in some ways an introvert like her - but we fit together perfectly and even today I read her love letters to me crying. Then the mourning and the loss of hope (depression) led this creature to lose herself and to lose her self. It was the disease that was advancing and the first diagnoses a few years ago (neuro-psychiatrist) killed her inside. But I stayed by her side until the end hoping to kick the can and believing that the disease affected young people but gave a little time. None of this was true for me.

Now what remains for me are only the memories and a lot of sadness for what was and will no longer be.

Alessandro

ThisLife

@alessandro64 Your questions and pain are the same that many of us struggle with. You are not alone in that, but that doesn't make it any easier. You were by her side and saw that she had the care to make her life as comfortable as possible. That was protecting her. None of us can protect our loved ones from the ravages of this incurable disease. Your question about why the mind is gone yet the body lives is the question we ask the universe and is the ultimate unfairness. Our loved ones' Stage 6/7 is traumatizing to bear witness to.

Each of us comes to a place of peace and acceptance at our own speed and in our own time. You ask the questions again and again until you are satisfied with the answers (not likely) or have made peace with not knowing.

Sending you wishes for a moment of peace.

Google Translate:

Le vostre domande e il vostro dolore sono gli stessi con cui molti di noi lottano. Non sei solo in questo, ma questo non rende le cose più facili. Eri al suo fianco e hai visto che aveva la cura di rendere la sua vita il più confortevole possibile. Questo la proteggeva. Nessuno di noi può proteggere i propri cari dalle devastazioni di questa malattia incurabile. La tua domanda sul perché la mente se n'è andata e il corpo vive è la domanda che poniamo all'universo ed è l'ultima ingiustizia. La fase 6/7 dei nostri cari è traumatizzante da testimoniare.
Ognuno di noi arriva in un luogo di pace e accettazione alla propria velocità e con i propri tempi. Fai le domande ancora e ancora finché non sei soddisfatto delle risposte (improbabile) o hai fatto pace con il non sapere.
Ti invio gli auguri per un momento di pace.

GothicGremlin

I was so surprised to see this thread, although happy to see it. I'm sorry that all of us are here, dealing with all of this.

I'm in a similar, yet different situation than most of you, it wasn't my spouse who had dementia, it was my sister. Although we were close, it's just not the same thing. Peggy was diagnosed with early onset Alzheimer's and fronto-temporal dementia in 2018. She was not yet 59. She passed away this last March, so her journey was relatively speedy - about 5 1/2 years.

How did I cope? Honestly, I'm not sure. When I look back over all of my therapy notes, I can't believe my s.o. and I weathered 2022 and 2023 at all. Those were the two years of pure hell. During all of those years I tried to make time for myself, and sometimes I'd succeed and sometimes I didn't. I spent (and spend) time at the gym, and I tried to make time to visit my favorite goth clubs. Those might be weird ways to cope, but they were helpful for me. Maybe it was the physicality? I had a therapist all through Peggy's illness and that helped a lot as well.

Now that I know you're all here, I'll make it a point to drop in!

ThisLife

Thanks for dropping n @GothicGremlin We will enjoy seeing you here!

tigersmom

@GothicGremlin , welcome to our thread! It is so good to hear from you! I followed your journey with Peggy closely, partly because I have three sisters. You were such a great advocate for Peggy. Things are settling a bit for me. Friday was eight weeks since DH’s departure, and I am starting to come to terms with the fact that he made a choice in this outcome. I miss him terribly, but when I look clearly at what lay ahead for him, I can’t say I’m sorry he didn’t have to go through that. This is a terrible disease with no good outcomes. Sometimes, when you’re desperately trying to hold onto them and keep them with you, you can forget that. I am wishing you and all my fellow caregiver warriors peace in stage 8.

fmb

@tigersmom wrote:

This is a terrible disease with no good outcomes. Sometimes, when you’re desperately trying to hold onto them and keep them with you, you can forget that.

That is what I am struggling with as DH is in what are probably his final weeks. He developed a UTI over the weekend (they are giving antibiotics) and his CHF-related abdominal swelling is back worse than ever. Rationally I know it is only a matter of time. My heart is having trouble letting go.

GothicGremlin

@fmb and @tigersmom

This was something I struggled with as well — that feeling of wanting to keep her with us, and letting her go so that she wouldn't continue to suffer - and she was suffering. It really messed with my head.

The things she chose to tell me when she had those very rare moments of lucidity — "I can't do this anymore", "this is bad, isn't it?" "I used to be fine". In those moments she knew what she was up against. Each time she'd say something like that, it felt like a gut punch. Of course I let her know that she didn't have to do any of "this" anymore if she didn't want to, and that I'd support her whatever she chose. Those were hard moments, and I know all of us have been through them.

I've been at stage 8 now for about nine months, and it's gotten easier. What's really helped is that Peggy's two best friends have become my friends now. We still all talk. They're such wonderful people, and I hope that we stay in touch. Somehow I think we will.

I've still not resolved all of my feelings for those claimed to care about Peggy, but who were nowhere to be found when she really needed them. I know I have to let all of that go, but I haven't done that yet.

Also, @tigersmom that's how I approached Peggy's estate as well - one thing at a time, a little each day until it all gets done. I did that with my parents as well.

And thank you @tigersmom and @ThisLife for the welcome. It's nice to be able to process everything with others who understand.

Quilting brings calm

@tigersmom I think mom chose her outcome too once she heard the word hospice. No way to ever really know. As to the estate, yes, a little every day. And a notebook documenting what I did that day. Mom’s will be my third estate as an executor in a little over 19 months.

GG - it’s going to be a long time before I can forgive and forget the people who I feel should have been there for my mom/step-dad and who I feel should have helped me. I guess those of us here have different senses of what are appropriate responses than others do.

tigersmom

@fmb , I am so sorry that you are going through this. For me, this part was really hard. The heart wants what it wants, and it will always want to keep our loved one close.

@GothicGremlin , my husband said the same kind of things to me, especially this summer before he went to the hospital. He would say, “I can’t do this anymore,” “I want to get off,” “It’s all too much,” and “Maybe I should just kill myself.” I still wish I had never taken him to the hospital, but how could I not when he was saying things like that? There really were no good options. I had already selected a memory care facility, but if he had arrived there as he was, I am certain they would have packed him off to a hospital, too.

And @Quilting brings calm , I know the pain of dealing with this choice our loved ones made. I will never be sure, either, but four different doctors have told me that they believe not eating was an act of will on my DH’s part. I so wish he had not made that choice, but when I look at what lay ahead for him, I am not sorry that he is no longer suffering. He was in pain. He was suffering. He had to go. That’s how I have to look at it now. I keep repeating those three sentences to myself.

I am wishing all of you peace, but I know that that will definitely take time.

CatladyNW

Quilting and GG, thanks for posting on this board. I struggle with letting go of all the painful memories of the last years of DH’s life. He was truly suffering in the last few months. I didn’t call Hospice soon enough, and he died less than a month after they were called in. There were so many decisions that I regret but in the end, it probably would not have changed anything. I that he is no longer suffering but that does not make it easier for me. Only those of us that go through this awful experience understand.

alessandro64

https://alzconnected.org/discussion/comment/230232#Comment_230232

Sto rileggendo gli ultimi commenti e mi sembra di rivivere le stesse cose che io stesso ho provato con Margherita, l'ansia, il terrore per ogni cosa, le allucinazioni e il non capire cosa le stava succedendo in alcuni momenti improvvisamente. Solo ora ripensando ad alcuni fatti ed emozioni vissuti in questi anni recenti (3/4 anni) mi sembra di rileggere un libro con un finale diverso. Ho sempre cercato di ricondurre la nostra vita a fatti logici ma purtroppo non è possibile con questa malattia. Ho provato a dare sicurezze con azioni fatti e parole ma il suo dolore non era mitigabile. Sapeva di dover morire e mi diceva che temeva che la malattia le portasse via la vista delle cose a poco a poco. Questo mi ha fatto morire.

Ora non ho più una vita, riguardo continuamente le sue foto di come era giovane e bella, perspicace e intelligente, una vera compagna di vita e non mi do pace sapendo che anche i suoi parenti piu' stretti non l'hanno mai capita veramente. Padre, madre e sorella le hanno sempre messo davanti i loro problemi e lei, dal lato della sua enorme empatia, ha sempre sottovalutato il suo stato, come se dovesse sempre e solo sacrificarsi per gli altri.

Ben conoscendo questo, ho sempre messo davanti il suo benessere e le ho dato veramente tutta la mia vita, in opere e azioni. Nulla ora mi fa stare bene se non pensare a lei come era, e mi rattristo al pensiero di quanto abbia sofferto.

Oggi mi sento in colpa per essere sopravvissuto e non sopporto più le persone che si lamentato dei loro problemi insignificanti quanto esiste gente che a causa di un destino incerto e beffardo è colpita da queste orribili malattie.

Sono solo otto mesi che è mancato il mio angelo custode e non so trovare nè pace nè un senso alla mia vita.

Vorrei un consiglio su come reagire al dolore dopo che mi sono tuffato nei ricordi di come era bella la nostra vita prima della malattia che, come un ladro nell'oscurità, ci ha derubato di tutto e del nostro futuro assieme.

Dicono che questa malattia - quando colpisce un coniuge - uccide due persone. Mai tali parole sono state così vere e realistiche.

Ho due figlie che si sono lasciate alle spalle il loro immenso dolore, rappacificandosi con la vita e mi dicono di accettare - come loro - la perdita, ma io non ci riesco. Mi ritornano in mente le sue parole in ogni momento della sua vita e in ogni situazione che abbiamo avuto insieme negli ultimi trent'anni.

Per me è solo angoscia.

Datemi un consiglio per favore.

Alessandro

CatladyNW

Here is a translation from Google, so I hope it is accurate:

Margherita, the anxiety, the terror of everything, the hallucinations and not understanding what was happening to her in some moments suddenly. Only now thinking back to some facts and emotions experienced in these recent years (3/4 years) I feel like I'm rereading a book with a different ending. I have always tried to bring our life back to logical facts but unfortunately it is not possible with this disease. I tried to give security with actions, facts and words but her pain was not mitigable. She knew she had to die and she told me that she feared that the disease would take away her sight of things little by little. This made me die.

Now I no longer have a life, I continually look at her photos of how she was young and beautiful, perceptive and intelligent, a true life companion and I can't find peace knowing that even her closest relatives never really understood her. Her father, mother and sister have always put their problems before her and she, with her enormous empathy, has always underestimated her condition, as if she always and only had to sacrifice herself for others.

Knowing this well, I have always put her well-being first and I have truly given her my whole life, in works and actions. Nothing now makes me feel good except thinking about her as she was, and I am saddened by the thought of how much she suffered.

Today I feel guilty for having survived and I can no longer stand people who complain about their insignificant problems as there are people who, due to an uncertain and mocking fate, are struck by these horrible diseases.

It's only been eight months since my guardian angel passed away and I can't find peace or meaning in my life.

I would like some advice on how to react to the pain after I have immersed myself in the memories of how beautiful our life was before the disease that, like a thief in the darkness, robbed us of everything and our future together.

They say that this disease - when it strikes a spouse - kills two people. Never have such words been so true and realistic.