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debby319 Asked January 2019

How do I help my dad with dementia grieve?

Both of my parents came to live with me in my home almost 3 years ago.


Early on they had mild memory loss and sometimes would be a little confused. Over the last year their dementia progressed more quickly. My Dad has become very quiet. He was once so outgoing, friendly, always wanted to make folks laugh! He can't hear well, and can't see well. He isn't weight-bearing and he has arthritis pain. He is 95 years old. I hate seeing his world shrink so much. Mom was his queen. :-) They were married just shy of 70 years. She died last week from dementia. She quit eating and drinking. She was 97 years old.


It hit me hard even though I thought I was prepared. And now I struggle to know how to help Dad. I told him when Mom went on Hospice that I thought her "time" was near. (They had both talked quite a lot about being ready to go, and shared their faith.) When I told Dad this, he nodded and said, "I understand." I explained that we were taking excellent care of her (she was still at home with us, but not getting out of bed as usual). He said, "well...she's 96, right?" I was shocked that he knew her age so close. She had turned 97 just a couple of months ago. So, I said, yes...she's 97. He nodded and then said, "We all must face it one day." I held his hand and he closed his eyes.


After that he went to her bedside 3 or 4 times before she died. She lasted about a week after that talk. When she was still responsive they held hands. She smiled at him. It was beautiful and heartbreaking. They seemed to nod at each other. I feel they both understood.


But how can I know for sure?


I have caregivers that come into my home and help with their care. One day Dad asked to see mom. The caregiver wheeled him to her bedside and he began to tuck her in saying that she doesn't like to be cold. He then tried to pull the blanket up over her head.


I was by my Mom's side when she passed away early one morning after several days of being non-responsive. She was skin and bones and my heart was breaking even seeing how much she had changed physically.


After she died, I immediately had to switch gears to do my best for Dad. We decided to wait until he asked about Mom before telling him anything. (Before she was bedridden he would always ask where she was if she wasn't at the dining table when he got there. We'd always explain that she's in the bathroom or whatever the case might me, but that she was coming!) He has NOT asked about her a single time since she died. Except the one question he asked on the morning she died, after her body was taken away...He asked, "Are we alone in here now" referencing the bedroom they shared. And when he was told yes, he nodded and closed his yes.


Now he is having longer periods of shutting down, and more often. He will look at me when I give him a hug. He'll smile when I tell him I love him. But then, he often closes his eyes and shakes his head. He has periods of time where falls asleep and won't wake up. Like at the breakfast table. Even if you get him to open his eyes they soon roll back and he shuts them. This isn't NEW since Mom's death, but it is happening much more often. Is this grief? His dementia? The combination? The sleepiness seems to be his biggest symptom of dementia over the last year. He also will wake from a nap very confused. He still knows me and others, but doesn't say much. He will answer in a few words where before it would be a conversation.


I just don't know how to help. Should I bring up Mom? I am afraid of him having to deal with reliving the realization that she is gone. Over and over, so I'm letting him lead that now. We continue to just love him like crazy. I don't want him have to be strong for me (although I miss him sooo much and miss his strength, his words and his support).


I'd appreciate advice. Tomorrow is my Mom's celebration of life at home. I'm praying that Dad will benefit as well. We will be at home so we can keep an eye on what he can and cannot tolerate and respond to that.

EXPERT Dianne Stephens Jan 2019
Hi debby319!

First of all let me extend our condolences for your loss. You are a grieving daughter as well as a primary caregiver for your dad. To be honest, it sounds like you may need a little time for yourself to recharge as well as grieve. Have you considered a respite stay for your dad? Many assisted livings in the area who are trained for someone with memory loss offer short term stays (even a week or two) where they can take over the primary caregiver role and allow you to be the daughter again, a role it sounds like you haven't had for awhile, outside of caregiving.

Please be sure and take some time for yourself. Caregiving can be easier with a little extra rest and 'you' time.

I hope you find this helpful.

Isthisrealyreal Jan 2019
I am sorry for your loss.

Your description of the situation leads me to believe that your dad knows that his beloved wife has gone on before him.

He is from a generation that really discouraged men from crying or expressing to much emotion.

I would try to share happy memories of mom and their lives with dad, maybe he will engage, maybe not but I think it is important to talk about our loved one, she was a big part of your lives. Her passing has left a hole, fill it with memories that are full of love and laughter.

Having her celebration of life at home is a great idea, it lets dad remember her in life.

Be kind to yourself and take time to grieve, maybe a hot bath or shower to cry your eyes out, if you need to shed tears. You are obviously a believer, so is dad, to know that she is renewed and young again can be such a comfort that there are no tears, just anticipation of seeing her again.

It is not uncommon for people that have been married as long as your parents to pass within months of one another, prepare your heart for whatever is to come.

Your parents are both very blessed to have you. God bless you for all you do!
debby319 Jan 2019
Thank you for your thoughtful answer. It’s such an honor to do this. But at the same time it’s crushing me. I’ve heard my whole life I’m too sensitive and I guess it’s just difficult for me to see especially when Dad can’t seem to say what is helpful. We’re just trying to love him and put some joy out there for him. But it’s a struggle since although he always cooperated, it’s rare to see him “look happy”. Mom could just smile at him and he would light up. Wish I could share a pic.

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Dadsakid Jan 2019
I’m so sorry for your loss! How heartbreaking it is to see our parents deteriorate into a shell of their former selves. Your dad seems to be acknowledging that he has had a loss. Although he may have moments of confusion, and ask again, it seems that he is peacefully accepting and understanding. You are doing a wonderful job taking care of his emotional and physical needs, and unfortunately with dementia, every day is different. Your attentiveness without being intrusive is certainly showing how much you love and respect your dad. He may not be the same person he was in the past, but you really seem to be aware of his subtle changes, and you’re looking out for his best interests. Much love to you both as you celebrate mom’s life tomorrow!
debby319 Jan 2019
Thank you!!
Alzh101 Jan 2019
Hello Debby319. From what you wrote, it sounds like you are helping your dad grieve. Every person mourns in his or her own way. Part of grief is acceptance and it sounds like both he and you have done that. I’d continue to let him lead as far as his dealing with your mom’s passing. However, YOU too are grieving and you need to process and deal with your loss as well. Perhaps you going through photos and talking it out would be beneficial for you. With my experience in dealing with a similar situation, I’ve found that in grieving for the loss of my dad with my mom( she has Alzheimer’s), we definitely have very different ways of being comforted. What works for us is letting my mom bring up my dad’s passing whenever and acknowledging her pain and loss. The mistake I made was trying to share my own grief with my mom. She simply was/is incapable of “being there” for me due to her illness, but I could be there for her. I’m sharing this because YOU are most likely in need of grieving and support but because you are also still your dad’s caretaker, you may be putting his grief above yours. PLEASE remember to take care of yourself and allow yourself a time and place to grieve. You are in a very difficult position and ARE doing a fantastic job already. I hope you take a moment to honor yourself for all you have already done and are still doing. Blessings and strength to you and your family during these trying times. May your mom’s memory be of comfort to you as you mourn her passing.
debby319 Jan 2019
Yes! You are right. I have expressed my grief to Dad with a hug and the words, “Imiss Mom”. I’m not comfortable sharing more than that because I know him and he would try to fix it and he’d be sad and stressed worrying about me. A year or so ago I was upset about something and just needed a Dad hug. He hugged me and the tears started. I tried to get a grip quickly but he said, “oh no no no. Don’t be sad”. I told him I was just upset over something snippy a client said and that I was fine. But I hated that I got that on him!

I honestly font don’t know how to help myself right now. I know I need something. I’m having a hard time leaving the house even though a caregiver is here.

Have not not been sleeping well.
AnnReid Jan 2019
I have posted previously that the day my mom died I knew that my dad had come to her while I was there to take her home. It was the most peaceful and joyful experience to be there, already grieving for HER loss, to feel his love embrace her again after the 25 years since he’d gone.
It has been so beautiful to read what you have written, because I believe what you have described is very much as it was when I lost Mom.
You ask how you can know. My dad had been gone almost 25 years when I felt, and KNEW, that he had returned to her to take her Home with him.
It had almost killed me to lose him, but over the years between his death and hers, I had been Blessed with the awareness that he had NOT gone as far as I’d originally feared, and that his presence was as true and as beautiful as the last time I’d seen him on this earth.
The love your mom and dad shared doesn’t, and CANNOT, be lost by physical separation. He knows that she’s there.
As dearly as they both loved you, they surely want you to know that too.
Believe it.
debby319 Jan 2019
That gave me goosebumps! Thank you!! Bless you.
Countrymouse Jan 2019
I'm so sorry for your loss, Debby.

Continuing just to love your father like crazy sounds good to me. I can't see what more anyone can hope to do.

Um. What are you doing to look after yourself? Do you have lots of family and friends around you? I think you probably already realise that rejoining your mother may come to be what your father feels is best for him. It would be better if you were braced for that, just in case, so that you don't start imagining you've let him down. You're not letting him down, you're doing a grand job in a very delicate situation.
debby319 Jan 2019
I’m not taking very good care of me. It’s been a loooong Road with them. I have all kinds of battles I’m fighting with my sister over her need to try to get their money and be the one in control. That alone is a full time job of court, lawyers and keeping/providing ridiculous amounts of documentation. On top of that to deal with finding money to meet their expenses (have very little access to their resources still) and juggling appointments, medicine and the ever-changing physical needs they have had...and wrapping my mind around dementia and creating a care plan and schedule that our household follows, managing caregivers that come into my home to be certain they are providing the best most consistent care when here, AND working a full time job (now out of my unfinished basement).... I’m just so worn down. And the weird thing is that I don’t even know what I need! I have good friends, wonderful caregivers. So there is always someone around. But it’s bone weary. Thank you.
jacobsonbob Jan 2019
Why is it assumed that people have to "put on a show" to prove they are grieving or at least aware of what has happened? Maybe Debby's father is fully aware of what has happened, understands that his wife was very old, and simply accepts it. It's best to let his actions guide Debby. If he is losing the desire to live as a result of his wife's death, that must be accepted, too. Sorry if this appears harsh, but I believe people often assume there is something wrong if others don't react to a death the way they themselves do.
dldykstra Jan 2019
You may have worded it a little harshly, but I agree totally to let Dad be the guide. It sounds like gets it, even if it's more of a "sense" than a clear realization. And most importantly: I never heard any mention that he asks constantly, so it is a terrible idea to make up a lie about where she's gone. It doesn't seem like that kind of situation/dementia at all.
dldykstra Jan 2019
I think you are doing everything perfectly. I don't want you to fret about anything, just mourn your mom and take care of yourself and your precious dad. I write this as I think I've never read a post from someone whose situation is so close to my own, so I hope I can understand a bit of what you are going through. I think your dad definitely "gets it" even if he might momentarily forget she is gone. If he is "shutting down" more that is normal. Just hold his hand more, sing to him, and let him see your tears from time to time. You are doing such a great job of letting the end of their earthly lives be natural, as it should be. It's important that he be part of the process, and the celebration of her life. My heart breaks for you, and I wish you many blessings!
debby319 Jan 2019
Thank you! I hope you are blessed as well! I don’t know your situation, but I know this is the road less taken. Again I’m sure you’d agree that it’s winderful and awful twisted into one. ❤️
JoAnn29 Jan 2019
I think its a broken heart and he may follow her soon. 700 yrs is a long time to be with one person. He misses her. They can lose the will to live. My MIL did it.

Jasmina Jan 2019
Your dad knows. You already told him. Leave it at that. Why would you want to hurt him over and over by reminding him over and over???? Sounds like a guilt issue, not his issue. Let the man have some peace. You want to keep telling him just because hes not grieving the way you expect? Or hes not grieving with you? Or not grieving enough? That seems very cruel to me. You should seek out other family members to grieve with. Let the man have some peace in his final days.

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