My wonderful mother was diagnosed with dementia about 6 years ago. She had been doing pretty well until the last 5 months. She was able to live in an assisted living facility but was moved to a full care facility 2 weeks ago. I visited her yesterday and for the first time she didn’t recognize me and didn’t understand that I was her daughter. It was the worst day of my life. I’ve cried pretty much the last 2 days. My mother was a loving, kind and amazing mother and wife. She is reduced to a mere shell of her former self. I’m struggling with the unfairness and overwhelming sadness of this situation. I find myself crying a lot now as if I’m mourning the loss of my mother. Is this normal? I don’t want to spend what time we have together sobbing but each visit makes my heartbreak. She struggles with verbalizing so conversation is tough. I basically tell her stories of trips we took and how much I love her. She smiles but stares at me like I’m a “nice girl” who came to visit. Anyone else had a similar situation? Any advice on how to overcome this crushing sadness?
Might I also suggest joining a dementia support group for family members. You will get a lot of loving support from people that also are dealing with the same issues.
This video is quite good...
How to talk to someone with dementia
https://www.youtube.com/watch?v=ilickabmjww&t=10s
Mom really enjoyed the crafts at her memory care. It was sad to see a woman who had been a skilled painter and seamstress making crafts like a kindergartener. But then I saw how happy and contented she was doing simple things like coloring and decorating cookies. That was her new reality and that was OK.
You can keep your visit short, the fact that you are there is what is important. In Mom's final weeks I would stay 15 minutes and by then her attention had drifted somewhere else.
Yes, it's hard to watch someone lose themselves. But at the same time you have, I hope, good memories of your life with her. If she had died you go through a grieving process. It's the same thing with dementia, the person is gone even though the body goes on living.
My advice is to visit and just go with the flow. Don’t try to force her to remember, her brain can’t and you will just frustrate both of you. Mom would tell me stories about things that had happened and I would just smile and say "how nice that so-and-so was making a movie down the hall!" You will need to figure out how to find joy in any interaction you have with her.
If she is responsive in anyway, you can make your visits a happy time for her. My grannie had no idea who anyone was, she remembered she had a daughter but not a son but, couldn't recognize her daughter sitting next to her. My grandmother on the other hand was completely unresponsive to human interaction. She just looked right through everybody and nothing registered. Those were the tough visits, because the lights were on but, there was nobody home.
Finding things that bring her joy in the moment is how I got through. Visits included changing her babydolls clothing, tucking her in for a nap, after making a fuss about how beautiful she was. We shared a coke, which made her shiver from the carbonation, she would giggle and so would I. Then we would go for a walk, me pushing her and pointing out pretty pictures or flowers, then we would sit in the garden and chat, couldn't understand many words but, agreeing or making sounds of sympathy, all dependant on her facial expressions, then back to her room to play toss with a plush stuffed animal. These visits were very active for her and didn't last longer then an hour. Short attention spans require constant activity. She was always an amazingly happy, playful person and that atmosphere continued until she died.
I really recommend finding a treat that mom really enjoys, bring it every time. Take her out of her room and point out things that are pretty to look at, mostly find ways for both of you to have a good time in the moment. My grannie didn't have a clue who I was but, she knew that her time with me made her feel loved and happy and safe, how do I know, because her eyes would light up when I said hi grandma, it's me come to see you.
Visits were all very similar, she enjoyed what we did and it worked. Made it easier then trying to come up with something new for every visit. She didn't remember that they were groundhog day and that was what mattered.
I am so sorry for your loss. Alzheimer/dementia just sucks. Give yourself the grace to cry but, please don't do it in front of mom. I think they understand emotions, even if it's not comprehended, your tears can make her sad. So smile, laugh, play and you will find your way through these visits.
I still miss my visits and it's been 9 years.
Great big warm hug!
You had/have a loving, wonderful relationship, that until very recently, was a great addition to your life. Things have changed, and you no longer have that. BUT...
you DID have it. One day, after all this is over, and mom has passed to the next stage of existence, peace will find you and you will find that the good memories will still be there and still shoring you up as you travel through life.
A lot of us on this site DID NOT and DO NOT have any 'warm fuzzy' feelings for our parents who are still with us, giving us grief and actual emotional pain. I ENVY you, I really do. My daddy was a sweetie, so, of course, the way life goes, we lost him waaay too early. Mom is, to put it nicely, difficult. My MIL actually hates me (states it to anyone she talks to, so it's not just me making things up)...how I wish I had that kind of relationship with ONE of these women.
I was blessed with tremendous grandmothers whose memories I cherish, so I'm not totally w/o that kind of love.
It is so hard to watch a LO slip away, quietly and daily just leaving us. My heart aches for you---but do spend some time thinking of gratitude for what you HAD. SO many of us do not have that.
Your reactions and approaches match mine 100%.
Dolores, passed away two years ago. I know
She wanted me to go and on with life and with grave inability to do so, I did so, very slowly but
after two years and working hard I learned about new "life" and following loving suggestions.
Good luck.
prayers to you and your mom.
Family members who are seldom around mom don't understand when I say that I feel I lost her a long time ago. She is not the same person and I am not the same person to her at this stage. I am taking care of her body until it decides to leave as well. I feel honored to do that for my mom. It makes me feel good that I have been entrusted to do that for her. It really healed me a bit to look at it that way.
Hugs. I know the first time is a shock.
Love her for who she is and savor every minute because they are precious and too fleeting.
Take comfort in knowing that many of us have shared this pain and suffered these long, difficult losses.
When you are not with her do things to take a mental break from your situation. I liked watching an occasional movie and felt it could give me a 2 hour respite from my sorrow. Workouts of any kind were also helpful. Make sure to preview the film’s subject matter to make sure it is not emotionally painful.
This is a new chapter in her life now, adjusting you must make. It's quite scary to have you memories disappear, it sucks......love and peace to you
I think my mom knew who I was most of the time. But there were times that I wondered. She looked at me the same way you've described. Like I was that nice gal who came to visit.
I can't give you any advice cause the crushing sadness you described pretty much sums it up. The way I got through it was to take myself out of the equation entirely and just concentrate on making those visits as happy as I could for my mom. I could always make her laugh with my self deprecating humor or describing my horrific in-law experiences for her. Anything I could think of so I wouldn't have this sad, long face when I saw her. When I left I'd give in to the sadness. I took many cab rides home with sunglasses on so the cab driver wouldn't know I was crying.
The situation is unfair as you describe but alas, it's common. God bless you.
I think it may help you to get some counseling and often Licensed Social Workers who are specially trained in life transitions are best. In all truth you are mourning already and no death of the physical body has occurred. Moreover you are a witness to what can seem like a torturous journey of someone you love when you cannot help.
There is really no way through grief but working through it with time. Do consider getting yourself help just so that you can hear, comb through, and somehow manage to compartmentalize for your own protection. I am so sorry for what you are BOTH going through.
It’s heartbreaking. Each visit is another exercise in grief.
I pray on the way in, begging God to help me be of some kind of service to my mother and her caregivers.
I also ask God for the courage to even go in there, sometimes. Cause it just hurts.
I understand what you’re going through.
Praying for you tonight.
I don't think you or I overcome the sadness. It just becomes part of who we are as we continue this journey to the end with our mom's, you know? It's like the grief of death....you don't really get over the loss, the raw grief just let's up a bit with time. With each visit to see our mother's while they're still alive however, the horror and pain stay alive in the mind and it's like reopening a wound each time. Very difficult to say the least.
Sending you a big hug and a prayer for some peace in your heart.
Little bits of a person are eroded away and a shell is left. You can actually see it in photos of someone with dementia. There is a vacancy there. (I had a thought when looking at photos of my Husband. You hear the phrase "The eyes are the window to the soul". My thought was that with dementia God takes the soul early so the person does not know what is happening to them. That is why I saw no "life" in his pictures. I know silly but it made me feel better if I thought he was unaware how dependent he was and how much of himself he lost)..now I'm crying..
Anyway, I suppose that did not help you much with your sadness. Just know we all feel it.
Next time you visit mom might be totally different, she may know you. She may not.
Thank her for being who she is and was. Thank her for being a wonderful mom. Not everyone has that. Thank her for passing on the best of her to you.
She will always be with you. When you laugh I bet sometimes you sound like her, when you catch a glimpse of yourself in a store window you see your mom. She is not going to leave you..ever.
Continue to be the wonderful person you are, it is the best way to thank her.
((hugs)) for both of you
but it’s not always like that … lots have good moments of lucidity where they’re very aware of everything they’ve lost !!! and those
are the saddest of all !!!
I know exactly what you’re going through. I too mourned (and continue to mourn) the loss of my dad as I knew him. Sometimes stroke patients come back, but the doctors warned that there could be permanent brain damage in the reason and functioning area of his brain - they just don’t know. So, now I’m on the “waiting and seeing” side of things for the next 3-15 months.
I miss my dad. I’ll read about something, or someone will tell me something and I’ll immediately think, “Oh! I’ll have to tell that to Dad,” only to remember that he wouldn’t know what they hell I’m talking about if I did. Most of the time he’s so sedated he’s out of it, or he’s hallucinating. Even when he remembers me, the aphasia is so bad I don’t know what he’s saying.
He’s just gone, and he would be so pissed that he’s this way.
In terms of how to deal…. When I’m not with him, I mourn. When I am with him, I feel disconnected because the man I knew is not there. I treat him more as a child, fussing over him. It gives me something to do, and he feels taken care of. But when I leave, yeah. Most days I’m crying as I walk to my car.
If you find this grief too much, reach out and find a grief counselor, because that’s what this is. It’s a loss of someone that you love.
Hugs. I know it feels like it, but you’re not alone.
I now live alone 2 bedroom 2bath with my dog so things get better with crazy intensive rehab. Btw the rehab I had same with people who have had stroke.
she probably knows you’re someone very important in her life… and don’t pressure her to remember!! Just bring her little presents and enjoy the visits…
The ex-SCOTUS justice Sandra Day O'Connor went through the same thing. At the end, her husband with dementia did not recognize her and held the hand of the "girlfriend" he acquired by holding hers. Sandra Day O'Connor is now in a NH herself with Alz.
I'd recommend you download that Black Mirror episode called "San Junipero" if you don't have Netflix. Beyond the sci-fi elements, it really is about the multiple worlds that people with dementia often straddle, the temporal vertigo of being here now, and then 10 years ago, and then 10 years old, as one journo put it.