Hope we can make this board more active

@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

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 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 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.

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.

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.

(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

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!

@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.

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