Is it common to experience intense grief when a parent has advanced dementia?

I feel your pain as my dad is suffering from Severe Advanced Dementia. The strong man I knew as a great loving dad; along with the hero I looked up to isn't gone, yet lives inside the person that is no longer able to care for himself, has to be lifted in and out of his wheelchair by a Hoyer lift, etc.

Every holiday is difficult for me, as I'm sure hard for him as well. Our family always made the best of every single holiday whether it was birthdays, Mother's/Father's Day, and of course Christmas. While Dad and I knew we'd never experience the huge Christmases we used to have, we'd make the best of them while I made all the dishes Mom used to make (especially her Chicken Wings), while we enjoyed the day together.

Holidays have become more difficult for me also as Dad no longer knows them due to his advanced dementia. I try to make myself think that it's just another day now..but the memories always come creeping back and like you, I realize that the holidays as I knew them are over. The mother I knew is gone for 12 years now; while the dad I knew is a shell of the person he used to be due to Dementia.

It IS unbearable to watch them slip away. There have been times I've left the nursing facility he's now at..and cried my eyes out. When he started living there we'd talk for hours as he sat in his recliner. We'd laugh at dumb things on TV. Even when it was time for the nurses to help him into bed, he'd beg me not to leave and we'd sit up and talk for hours...and I sometimes didn't leave til after midnight.

I'm so thankful for those times..as they were a continuation of the times we'd spend when he was in Assisted Living. We'd go out to eat often, I'd take him for rides in my car..and we'd talk about old memories..making new ones. We'd have "slumber parties" where he'd crawl into bed and under the covers while I just laid at the front of his bed and we'd talk and talk and laugh and laugh...most times until the sun came up.

I'd call him every morning on the phone at the same time..and we'd talk for hours. Sometimes late at night when I couldn't sleep, I'd call him and we'd talk again..for hours. He's always been my best friend and even when we had our differences; it wasn't long before he'd be calling me and telling me how sorry he was for being difficult.

I've experienced your deep grief also because the dad I knew is not here anymore. He's alive, but the Daddy I knew is there inside, but on the outside..he's gone...and the realization feels unbearable.

Even more unbearable is that one day he'll no longer be here. I'll never see his wonderful smile, feel his warm hugs, nor experience his silliness and the funny things he used to say.

At one point, when thinking about him being gone from my life, I thought I'd never be able to deal with the grief. Yet seeing him the way he is now..a shell of the person he used to be that can no longer enjoy the things he used to; it makes me feel so selfish to ask him to be there the next time I visit. I know he keeps going for my sake and as I see him getting thinner and thinner; dementia taking it's toll on his ability to even speak anymore, walk anymore (as they use a Hoyer Lift to get him in and out of bed and into his wheelchair), etc.

I visit him more often now and sit on the side of his bed, telling him how much I love him and talk about old memories. I thank him for being such a great dad, my hero, and best friend. Even though he's losing his ability to speak day by day..his eyes and hands communicate what he can't say as he reaches for my hand and holds it tight.

These times mean the world to me and I cherish every moment with him; realizing that he won't be with me much longer. I make videos of our chats also as they'll be a lasting memory of my dad and I. Two peas in a pod and the best Dad and friend I ever had...

I too will be experiencing the deepest grief when he's gone. One can never prepare themselves for the loss of a parent..especially one you're so close to. As sick as he is, I may think I'm ready to let him go to a better place with my mom..yet I don't think I'll ever be prepared for the loss of my "Daddy".

I never thought it mattered either until I asked the lady over; The Support Group. She said Alzheimers go the direction of being a child, almost a baby. Their health deteriorates faster then someone with Dementia. Dementia affects memory, etc. and they can live several years or so this way because in general their health otherwise is Ok.

God bless you all..... I, too, know that's where my mom's heading and all I can do, despite my own physical limitations, is to be there for her (as you've all tried to be there for your Mom/Dad) as long as possibly can.

Well, I am one too grieving; My mom is here in body only. She has Dementia, Parkesins disease and living in a nursing home since Friday 26th, 2017. My dad was her caregiver and I helped out as well but not near as much as he did. I feel so lost without her and add to that guilt and much more. Everyone tells me all this in normal, I know this is true but I feel so depressed and I guess selfish too. I see mom always by herself when I go there and she no longer knows me which breaks my heart. I knew all this would happen but honestly you think you are ready for what you know is coming but when it happens you soon find out that there is no getting ready for this and a peice of your heart is gone. I've already had three family members with Dementia, I told my daughter it hits me that I will never, ever, ever have a mom again. She is here but in body only.

I have been caring for my husband who was diagnosed with AD on in 2013. I am the only one whom he trust to give him a bath. Neither of two in home day care givers can do this tasks because he can be combative. It takes two to change his diaper. I am 5'1" and he is 6'3". He gets aggressive when the hand held shower touches his head. I had been hit on the head a few times, it shocked me when he punched my nose and mouth. I would end up crying and he would mimicked my behavior. After shower he would asked if I am okay, not being aware of his behavior. My counselor is arranging for a respite care to help with he bathing once a week. If his diaper gets messy with bm, I had no choice but to take him into the bath stall to clean him up. He refuses and get angry if I wipe him with toilet paper. Any suggestions or words of wisdom to calm my nerves - spiritual/words of comfort as a gentle reminder that this is not himself but the disease doing it will be greatly appreciated. thank you, Teresita

So, (to update my May 8th post) I went to court May 9th, only to find out that my Mother had had another stroke on Mother's Day, the day before court, and was in ICU. No one had bothered to tell me. After court, which was a blur due to the shock of the news, I went to the hospital, in spite of the restraining order, and saw her. In her eyes I could see her confusion and surprise, and she could barely speak. I leaned for my my last hug and to tell her I loved her and that she would know the truth in heaven. As she squeezed me as tight as she could, I heard her say over and over in my ear, "I love you, I love you, I love you..." and we hugged. Within minutes my brother showed up from court and began yelling for the nurses to call the police and security. Mom became agitated so I immediately left so as not to continue to cause her stress and so I would not be arrested. Really long story short, in July my brother was given conservatorship incredulously and with no charges ever filed, no evidence of wrongdoing, no trial, nada, the judge made the restraining order against me ever seeing her again, permanent. My beloved Mother passed at the end of August. Thank goodness she didn't know how bad things were. I've being dragged into litigation but cannot afford an attorney, and believe me, even if I could, my brothers attorney is too well connected to the probate court in our county and no one wants to go up against her. I don't know what will happen next, but I am so sad that her life ended as it did and I was not able to be with her on that journey. Thanks for again letting me share my story.

Myself and my sisters are living this right now. Mom is in a nursing home and receiving 24/7 care it's so heartbreaking for us to see her blank looks not know I do not know how to do the simplest things she's about two and a half years and Her diagnosis of vascular dementia and Alzheimer's we grieve for her the grief the woman we knew it has been very helpful reading your post

Sherri23, this is so terribly sad that there are no words for it. We grieve as you grieve.
Carol

Morgan, I can understand exactly where you are. My dad's dementia came after a surgery to correct effects from a WWII brain injury. The dementia did come overnight - shocking, heartbreaking and irreversible. Ten years of grieving while trying to provide him with a decent life followed. Whether the process is slow, as with most cases, or instant as in ours, we grieve what they and we have lost, what they and we must go through, and then their physical death. My heart goes out to all of you.
Carol

Today, Mother's Day, I spent grieving my Mom. It has been 7 months since I was allowed to see her and tomorrow is our hearing to determine if my half brother will win his conservatorship battle and try to make the restraining order (prior post explains) permanent. So she could live another 5-10 years and I'll never get to see her again. She still doesn't understand why I don't visit and her attorney has made no effort to arrange any visitation.

My mom's dementia quickly came on too, literally overnight due to mini strokes, It has been a living nightmare, I told my sister's we will have to grieve twice.

I am right there with you. Once I realized that I was grieving, I actually felt better about it because I realized I wasn't losing it. Thankfully I have a very supportive husband who visits mom for me quite a bit. I have a friend who commented that she doesn't "do" guilt. Guilt is a big one, and it definitely gave me a better perspective. I pray for all of us daily.

I get little spurts of grief now and then. My mom is in stage 6 of vascular dementia. Maybe it's Alzheimer's... I don't know... but to me what's the difference anyway. It all ends the same. I take her out a couple of times a week, even if it's just to let her sit in the car while I drive her for ice cream and french fries... things she enjoys. She will say "so many cars" at a stop light. I asked her today if she'd like french fries. She said, "What's a french fry?" - Long gone is my mom who I would laugh so hard with we would have tears running down both our faces snorting to catch our breath. Long gone is the woman who I took for granted would always be there for me. She's right there, but she's drifting away. Not gone yet, but the vacancy in her eyes sometimes frightens the hell out of me. The inevitable is coming. I cringe thinking of her in any pain and I hurt for her when she is talking and begins to say jarbled words instead of real ones. I will always remember my mom as she was when she was healthy and whole; though. I know that much. I will always return to that time when she was my caregiver and protector; my beauty! When I think of her in the future, I will remember who she was; not what this disease made her become.

You mother will know the truth - that I do believe. It's little enough to hold on to in a case like yours, however. This is something that no one should have to go through.

Feel free to update us if it helps to write about it and try to take care of yourself.
Carol

So sad to say I too am learning hard cruel dementia is. My situation as only daughter, best friend and caregiver to my Mother for years was complicated by a stroke causing rapid onset of dementia. The result was I was accused of financial, physical and verbal abuse after she became confused trying to answer questions my nephew asked about her money.
When I was confronted by her, she gave me no chance to remind her of our relationship prior to the stroke and proof of my innocence and called the police. I now have a restraining order and cannot even speak to her or see her. She has a trust and will, but her two bastard sons took her to the bank, had her sign over her accounts, moved her into a crappy care facility from her own home and are trying to get conservatorship over her. The trust assets have been sold or hidden and the trust and will Mom had in place, naming her niece as conservator of her estate and person, is basically being ignored. Her niece now must obtain an attorney, $10k up front, and also sue for conservatorship. Even though she is named in the most recent/last trust document. Mom has been declared incapacitated, assigned legal counsel by the judge, and I can do nothing because her counsel didn't bother doing his due diligence. I am assumed guilty, will have to defend false accusations and he plans to use it in court ordered mediation on the conservatorship. I don't even want to be conservator but I also don't want my half brothers to be either. Why do retirement planners, etc. ALL advise that to protect yourself have a revocable living trust, with the durable POA, the springing POA, advance health care directive and living will? It is right now an unenforceable document since they took control of her money, assets and moved her so fast. They put her in this place without her walker or cane, gave away her lift chair and refuse to pay for any extra care. They are basically killing her. She also hasn't been given a phone she can use. They have violated so many elder laws, yet because this is being handled by our wonderful legal system, nothing can be done till after mediation and then the hearing. My Mom turned 87 the other day and I haven't been able to see her or talk to her. We were so close and my heart is so broken. So many more details to tell whole story but none of us has that much time. Thanks for letting me vent. I hope someday my Mother will know the truth...

Dianne - I don't even know if this thread is still active, but I found it and can relate. My Mom (93) has dementia and got pneumonia in July. After the pneumonia, her dementia escalated to the point where she doesn't know where she lives although she's lived in the same place for 13 years. She cries a lot, and can get very, very angry, and that's so difficult to be around. I'm going to a therapist to learn how to talk with Mom now and find out what I can do for her. I feel like I'm dying too as I've watched her get so much worse so fast. The one hope I have is that things always do change, and one day hopefully I'll only remember only the good times Mom and I have had together. Right now life is quite unbearable, and I'm doing my best to survive myself! Hang in there!!! You are not alone!!!

Dianne I spoke to the nurse at the Nursing Home where my mother is living, and she said dementia does escalate very quickly after any injury or trauma. It's like our roles are reversed. Mother is like the child. I'm going to see her later today and I know there'll be no conversation on her part. I end up chatting to all the other elderly residents. I feel so guilty as well that she is living in the Nursing Home but I know (by reading other peoples problems), it's not uncommon to feel like this. Well it 2012 now - I wonder what this year is going to bring for us all. Happy New Year anyway to you all.

Thank you so much for your helpful answers. It is good to know I am not the only one who has experienced this. Part of what is so hard is that I am single, and my sister is also single. We were the only ones here for our usual "family Christmas." Even though in the past years Mom would drive me nuts with her perfectionism during the holidays, yet now in a way I would give anything to have that back, as stressful as it was because the big empty hole left without her here is so painful for my sister and me. Christmas, with all the focus on family and traditions, seems to really amplify and bring out strong feelings. Also, this was the first time my sister has seen my mom in a year and she is really having a hard time seeing how fast Mom has gone downhill. Sue, you're right--our situations are very similar. Mom's dementia was slowly progressing, but when she fell and broke her ankle and had to have surgery, requiring rehab, the dementia escalated super fast.

Diane, oh yes it is so painful to see our parent buried inside this shell on the outside. I am so sorry you are experiencing this, but you are not alone.....hope it helps to know this. The spirit which is the essence of your mother is still there, on this inside, and I believe that at some level she "feels" your love and care for her. This is something I have come to believe, as I care for my father who has dementia. He shows little if any emotion at this point, but when I look deeply into his eyes, I feel a connection.....a validation that my attention means something to him, that it is accomplishing something. God bless you as you care for your mother.

I too went thru grief when my mother advanced to end stage Dementia. For me, I knew that it was just a matter of time before I lost her to this disease. I started to feel the loss that my mom was no longer here even though I was with her 24/7. I accepted that one day she be at peace and no longer suffer. When I was putting up moms christmas tree for her this year, I was overwhelmed with emotions. In my heart I knew this would most likely be moms last christmas. A week ago she took a turn for the worst and she went with the Lord on Thursday. She looked so at peace lying there. Yes, the tears came because of the loss. But then I gained a feeling of calmness come over me. The woman she became was my mom but no longer the mother I knew. In May, she progressed from moderate stage to end stage basically overnight. Reality of Dementia hit hard for me. I tried my best to prepare myself for this day. All I could do was make her comfortable and tell her how much I love her. I knew when she was ready to let go she would.

As I have been reflecting over the last 2 1/2 years with mom, I have so many wonderful memories. The days this woman drove me insane are now some funny stories I can share. Those are my memories that will be with me forever.

Just try to be as present for your mom as much as possible, tell her over and over how much you love her. I believe, even in the end of moms life she was "in there" and understood what was going on. Even though her body and mind had failed her. Live in the moment, we don't know what waits us tomorrow.

Take care of your Mama and take care of yourself as well. Everything will be okay.

Hi Dianne,
What you are experiencing is very, very normal. I'm glad you can recognize your grief. Your life has changed dramatically. You mom has spent the holidays in a nursing home for the first time and couldn't be part of the family Christmas.
You are grieving life as it was. You may even be idealizing the holidays as they were, but that's okay. Not having your mom there is a huge loss and grieving that loss is part of life.
We all grieve differently and at different times. Eventually, you'll likely get so you can treasure the good memories and bear the losses with less grief. But you'll likely have mixed feelings for a long time.
Your mom has the help she needs now and the safety of round the clock care. You've done your best and still are doing your best. Grieve, but don't hang on to any guilt. You'll struggle some but it will gradually become less painful. Take care of yourself, and please come back to check in with us.
Carol

My situation is the same as yours - my mother has been in a Nursing Home for 3 weeks and she has advanced dementia. The dementia came on very quickly after a spell in hospital with low sodium levels. Myself, daughters and grandkids went to see her on Christmas Day and it was heartbreaking to see her like this. I was passing her the presents and she just looked blank - we had to open them for her. Once a very chatty person, always laughing, it's hard to believe now how this awful disease makes them. You'll have to remember it's not your fault and just remember the happy times you all had together. It makes it worse that they are still here. God bless you.