grief

Deanna_M

There was an opinion piece in USAToday called "Driving My Spouse to the Afterlife" today. It really struck me.

I had been grappling with saying "goodbye" to my mother over the past couple of months, even though she continues to be fairly healthy. But, she is no longer who she was. And I have felt profound grief in the loss of the mother I have known for over 50 years. In the opinion piece, referring to his wife, the author says "those of us who love her and know her best are not permitted to say she died." That is exactly it, isn't it? My mother is still alive, but, as the author says "everyone seems to believe that there is only one type of death." Not so in dementia, right?

I am finding that the grief with dementia is protracted. I suppose I will eventually accept the next stage of my relationship with my mother, but I still grieve a loss.

glitterqueenscare

The grief of losing my Mom has been hitting me hard lately too.  I know exactly what you are experiencing.  I can be alone in a room with her and still grieve for her terribly.  The vital, funny, vibrant woman she once was is gone.  Today my family had Easter and she used to be the center of planning it all, cooking, laughing, etc. and today I am not sure she knew who everyone was or fully understood it was Easter.  It's such a cruel disease and terrible as you grieve the person for years as they slowly decline.  My Dad died of dementia in 2015 at age 76, my Mom was diagnosed shortly after.  She is 77.  I am constantly either angry at the disease, resentful of the caretaker role I play or in a state of grief.  It's a horrible cycle I think we all experience in one way or another but grief always seems to be present, there is nothing worse than the wave of grief that can swamp you when you realize your LO has progressed past another marker and something else is lost for them forever.  My husbands Mom died in her sleep one night, she had called him before bed and said to stop in the next day because she was making a carrot cake but never woke up that night.  I only wish my Mom could of died dreaming of making her kids a carrot cake.  He still grieves for his Mom to this day but he doesn't have the cruel memories of her progressively declining into becoming a shell of who she once was.  This disease brings with it a very cruel kind of protracted grief, I agree.

Space within

Lately I have been feeling the grief over my mom differently. June will mark two years that she has been in memory care. It took a long time for me to accept we could no longer care for her at home. Once COVID started I became angry on the inside that she was in memory care. Daily I count my blessings and make gratitude lists...to be present and get over the past and things out of my control.     Lately, I have been grieving .. have thoughts of how scary and alone my mom must have felt toward the beginning of the illness at certain times.   Each day forgetting more and more, but realizing she was forgetting or had a distant memory.... FTLD . 

I have learned so much about love and living ..since her diagnosis back in ...2012/2013. She obviously is different today than yesterday or the day before.   maybe it's the holiday or the realization of the impact of COVID.   Just wishing for and sending peace and a safe feeling to all those who are suffering.        And a tip heard from Pema Chodron... when you are feeling awful... just think of it as " okay, if I have to feel this way.. may I feel this emotion so others have to feel less of it."       

MinnesotaDaughter

Thank you all for sharing about your grief here, reading your experiences helps me feel less alone. 

I have had some grief before about my mom's memory loss and am currently experiencing grief from a situation that I am guessing many of you have been through. I would appreciate any wisdom and perspective you might be willing to share. 

My mom currently lives alone in a condo and my sister and live nearby and luckily we are united team in caregiving (and my mom will be reassessed this month). With the progress in vaccinations in our state and loosened restrictions I was able to plan a small family gathering for Easter with my mom at her condo. My mom is very sociable, loves people and enjoys entertaining and she missed family dinners a lot. She has lost the desire/ability to cook and I was able to arrange buying a fully cooked meal with her that we could reheat. I decided to stay with her Saturday night as it had been many years since I had spent the night at her place and I was curious.

Saturday I arrived mid-day, we unloaded my car and had lunch in her condo. She seemed to know who I was through lunch, during our mani-pedi appointments (trying to introduce a tradition here for self care for both of us) and while we were setting her table for the following day. Later in the afternoon we went to the liquor store to buy beer for the next day and then picked up dinner at Wendy's to eat in her condo. When we were checking out at the liquor store, one of her condo neighbors was the checker, she introduced me as her driver, and I smiled (wearing a mask as our state still has the mask mandates) and said I am her daughter, that she was joking. Later on I realized, she was not joking. 

While we were eating the Wendy's dinner in her condo, she asked me who I was. I told her that I am her daughter and shared my name with her (I did cry a bit then). She did not believe me. The rest of the night she did not believe me and I avoided arguing with her. I am grateful for her social skills that night... while her brain was telling her that I was not her daughter, she was interested in maintaining our relationship and asked many questions. The hardest question she asked (for me, emotionally) was "Why didn't anyone tell me you are my daughter?" I could not answer that.. finally I changed the topic and we managed to watch some TV together before going to bed. The next morning, I was her daughter again and she talked with me about the other woman who had visited her the night before and wanted verification that other other woman would not be coming to Easter Dinner. 

Saturday night was the first time the reality hit me that my mom does not always know who I am and it may be that she has had spells of not knowing who I am in the past. I am grieving this loss and the sadness and uncertainty that comes with it. On the positive side, my mom shared with me that she enjoys strangers and is not afraid of strangers, so I am hopeful that her enjoyment of strangers will be a strength for her going forward. 

glitterqueenscare

I remember well the first time I realized my Dad had no idea I was his daughter.  I cried too, I am so sorry.  It's truly heartbreaking to experience.  I had to remind myself of how much he loved me and our family and that it wasn't really "him" it was the disease but it's so hard to experience, a whole new thing to grieve and a big marker in the disease progression in my Dad's case.

I would be curious if in your Mom's case it's a sign of sundowners as it sounded like it was later afternoon/evening.  My Dad did not have sundowners but my Mom has it and it's the worst time of day for her most days but she is totally back to her "normal" by morning. Some days I doubt she knows I am her daughter in the evening although so far she always remembers my name. Sundowners is a whole new ball game I am learning. I think the only way you will know that is to try to keep an eye on her that time of day to assess where she is at and if it's going to be a problem.  I realize now that with Mom it was going on long before we caught it and could have made for a bigger problem when she was still living alone because I didn't catch it at first when we didn't live with her yet and she was/is a potential wandering risk.  I just read somewhere that women are better at hiding symptoms and parts of the disease like sundowners.  I thought that was interesting. In my Mom's case she has been hard to pinpoint her progression sometimes because she can be pretty good at hiding hers it for a long time.  Just food for thought.....

My Mom still knows most of us although she is starting to forget relationships and can't name her sisters and all of her grandchildren anymore.  When I walk in to pick her up from her adult day care she always smiles real big and tells the group "my daughter is here" and I must admit I am always a little relieved she still recognizes me as her daughter in that moment.  The day she doesn't will be a very sad day among many sad days.  Another marker passed of a life being extinguished slowly by a terrible disease. Tonight I took her for a little evening ride and it seemed to break her out of her sundowner cycle for the evening so today was a better day then some.  I wish you good days with your Mom and I hope I have helped you a little as you have helped me, just talking about the grief that I feel has helped so thank you.

MinnesotaDaughter

Thank you glittersqueenscare for sharing your experiences and thoughts. 

My sister and I think my mom might be experiencing sundowners as her confusion does tend to increase later in the day/night. Our mom will be starting adult day care in a few weeks and we are both grateful for that. 

It is wonderful to have a place to share about my grief with others who understand what I am going through. 

jakki

I had someone tell me the other day that I have been grieving for my mom for a few years and that it will be a different type of grief when she does pass away.  Not sure what I think.

The4thOne

I can't even share how this thread encourages me.  When my mother was first diagnosed in 2015, I dreaded the day she would not know who I am.  I knew the time of not remembering my name was coming, but then it happened in 2020, and then happened again, and again, and again until I had no choice but to accept it.  However, she instead would call me Lois, which is her sister's name, ironically a sister who also had Alzheimer's and my mother was her caregiver.  When I finally accepted that she did not know my name, I cried - hard!  I am the only girl, the youngest and I am named after her two sisters and her mother.  How could s he not remember my name?  I have to admit, even in acceptance, I still struggle with it.  We also 'debate' these shoes aren't mine, whose clothes are these? who is that? - I never worked with them.  And the people who have died that she insists we did not tell her about, which includes her mother, father, all of her sisters and all of her brothers, my father, etc.  It is remarkable that she is truly blown away and insists that she was not at their funerals, and did not know.  As a former Pastor who eulogized and preached over these moments...Oh and the exageration and events that get tied together in her mind.  

What others shared about the symptoms of Sun Downing - my Mom has that bad, real bad.  She gets aggressive, paranoid, accusatory, (we're stealing from her)  we moved her from her apartment without her even knowing, just packed her up,  etc.  We call it her 'Kidnapping Syndrome'.  And as pleasant and engaging as my mother is and is known for being, she has always been a strong personality who could pistol whip you with words - no cussing - just cut you down. Her personality is on steroids, mixed with anxiety, aggression, dominance, paranoia - shaken not stirred, is an emotionally, deadly concoction.  And she has gotten such a potty mouth!  But like was shared, the next morning, she is usually ok.  

But through the worst of it, just this week, certain events required that I had to give myself permission to start the grieving process for my mother.  The woman I know as 'Ma', who raised me and my brothers is gone.  She's not coming back, no matter how well we take care of her, no matter how many times we try to love her or pray her to a miracle, no matter how much we try to make this person remember the love and memories we want, wish and beg her to share with us, this person has none of that.  I have embraced that 'this is not my mother, so it's OK to act and respond somewhat detachedly because this person is not my mother.  But I have to respond, because it's my mother.'  

chrisp1653

Oh my ! All of you are hitting on the grief from a different point. I am so grateful that my Barbara never fully forgot who I was. I am also grateful that because of her myriad of physical issues, she was never able to do the things I have read about so many others doing, such as leaving the house, or trying to drive the car. She was fairly docile most of the time, and just seemed to be in another world. She would have conversations with her ex co-workers from time to time - of course they weren't there - and I would watch as her hands moved in the air. Sometimes she would ask for a paper and pen because she needed to take notes. Afterwards I would look, and there were nothing but scribbles. Almost every night up to the week before she passed she would tell me she loved me. I would usually ask her who I was, and sometimes she couldn't remember my name, but she knew I was her husband. She would watch the TV for hours and hours. Usually it was British mysteries, although she seemed to enjoy Bluebloods and Criminal Minds.

The last six months or so I had to feed her and help her with her drink because her hands would shake too bad. Her legs wouldn't go where she wanted them to, so getting her up and down to use the commode was an everyday problem for both of us. Dealing with poop and pee, diapers and baby wipes, spilled food and drinks - these were all things that I  ( mostly ! ) learned to take in stride.

Grief ? Oh heck yeah ! I lived with it daily. All of the things we were going to do when we retired went by the wayside. Each time a new symptom presented itself, I would learn a new strategy for overcoming it. On the night she passed, I remember that I kept sticking the digital thermometer on her forehead trying to get it to read something other than low. Of course, it never did. She was gone, and suddenly i was free to go to the store anytime I felt like it.

It's been almost 4 months now, and I still think sometimes that I can't leave the house because Barbara requires my full time care. Then I remember. It's just me now.

For me, as for so many of you, up is still a long way down.