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The question is quite vague, so I’m taking it as an open ended invitation to share personal experiences. I’ve always loved and appreciated my mom, but she has never really understood me. Never been too emotionally nurturing, or at least in any way I found helpful. Our family was always pretty dysfunctional, so I gleefully left home for college and never moved back. Over the years, I actually moved further and further away. I generally considered myself a dutiful daughter, or that’s how I thought of my calls and visits home, as I patiently feigned interest in my mom’s rambling stories about her trials and tribulations.
Fast forward to her 911 situation in April. She almost died, and the nurses in the hospital told me she was refusing to eat and telling them she wanted to die. Something in me shifted profoundly. Some primal need to protect this utterly defenseless woman who’d given me life. Given who she is, I knew she wouldn’t make it in the hospital or in a nursing home alone. I flew over as soon as I was vaccinated, and lived in a hotel for a couple months to help give her her best shot at more life. I moved her to a SNF, back to hospital, back to SNF, and when it became clear rehab wasn’t working, I moved her into a care home and signed her up for hospice.
During the time I was with her daily, I completely fell in love with her. I treasured her smiles. I discovered she was funny. Her annoying quirks became endearing. As she grieved how helpless and purposeless she’d become, I started to realize how resilient, driven, and independent she had been. As she looked at herself aghast in the PT mirror, at how old and emaciated she’d become, I saw her as beautiful. When she smiled, she was radiant. Friends and nurses called her “cute” and my husband called her “full-on adorable.” Possibly for the first time ever, at middle age, I realized I was proud of my mother, and I felt pride in being her daughter.
Sometimes I still wonder wtf happened. I went from decades of feeling cooly detached about my mom to needing to drop everything and run to her side. It was completely traumatic to decide to leave her in someone else’s care too, and only possible because she couldn’t tolerate me having dropped my career to care for her. So much of her life had been about supporting her children and their professional ambitions. For which I love her all the more.
Anyonymous1: My father lived a very short life, passing away at age 50 from CAD. However, my mother went on to live till age 94. What I noticed about my mother's elder years was not only did she not ask for help when she required it, but she lost her enthusiasm about ANYTHING. I.e. "Mother did you know that cousins XX are coming to visit you?" Her response "That's nice." Not "Wow, I am so excited." Nope.
I knew zero about aging, as my parents were still walking 2 miles a day when they were in their late 80's, early 90's. Honestly, I never was around elderly folks until my parents started to need help in their mid-90's.
I was totally lost with this new situation.. Now what? I had to have my folks guide me, but they tended to be very hush hush about mobility issues, they didn't want anyone thinking they were old.
Mom had lost most of her eye sight and pretty much all of her hearing, so communication was impossible. I knew she had been falling due to the black/blue marks on her arms. She never said anything, and neither did my Dad about her falls. Dad was open about his tumbles, rarely did he get hurt, he pretty much joked about it.
My folks have since passed, but now my sig-other and I are seeing ourselves aging. We do laugh about things we mis-hear on the TV. I have tripped over the cat, she is like a Roomba vacuum darting out from nowhere. Our eyesight is not user-friendly. And forget about driving at night. Oh, and squatting down to do something at floor level, now a challenge trying to stand up.
I think I might have a conversation with sig-other grown daughter about aging, and what we are experiencing so she isn't surprised by things we really don't want to do like we did in the past.... like having family over for Thanksgiving or Christmas. Entertaining is no longer fun, it's plain exhausting. Especially when the family sits glued to their smart-phones and not helping..... [sigh]
The role reversals that come with an aging parent are maybe the natural order of things even if it's very sad. I found it very hard to accept the changes I saw in my mom when she became very old. She didn't seem to care as much, her eyes didn't light up when she saw me. In fact they didn't light up at all any more. When she died I started questioning who my mom had really been cause I didn't have the reassurance of her love anymore. I started to wonder if maybe I had been wrong about her all my life and that the person I saw before me in the nursing home who was quiet and uncooperative and didn't seem kind and loving anymore was really who she was.
It's been over six years since she died and I'm just beginning to realize that she was a wonderful, kind, hard working, wise woman before she got old and just because aging messed with her mind doesn't mean that she wasn't still that just before she died. I know underneath all the ravages that took her away there was still that woman in there.
If I were to start thinking otherwise would seem like a betrayal of sorts. I know everyone's story is different but that's how I would feel.
The devil has taken her soul There isn’t any left anymore She wilts till she turns to dust The dust will open the door
Why, how, what? No answers, just broken shards of silence Is this it? I ache till I can ache no more. The devil has taken her soul.
The grief is mutual To see her suffer, Is to suffer The love is there, the like barebone The devil has taken her soul.
Don’t ever let me come to this. Will that even be me?? I will not even know myself anymore. The devil has taken her soul
I have given this my life-My intent to bring her back to life, to shore. Will she ever be mama again? Or is this just impossible to restore? The devil has taken her soul
I cringe to remember her The lady- I love, I love so much. Still do from my core…. her actions - her actions, I deplore The devil has taken her soul.
Will we meet again one day? All clean and bright and fresh? Fresh hugs, warm tears and joy- I see through the peephole The devil has taken her soul.
Dear Confuse, my heart really goes out to you and this poem, my sweet mother wrote poetry and it started when I was a young girl. God spoke to her and gave her over 500 that I am aware of. They are so beautiful and special and before she passed from Alzheimer's I found several of them in a back bedroom of my parent's house when I was visiting and helping dad care for her. I just know I was meant to find them at that time and share them with mom. I sat by her chair on the floor so she could hear me and picked a few to read to her which blessed both of us. I remember that she sat back in her chair and closed her eyes with a smile and said, " oh my " and I knew that she was recalling when she received them and how special they were. She was always reading her Bible and praying for others and there were countless times she prayed for me which I miss that so much and our talks about God and how much he loves us. She was just so amazing, and I always knew she loved me. The Alzheimer's was so cruel to take her away from her husband (my dad), her family and all those who loved her. I still find it difficult to accept after almost 10 years. I am so sorry for you and share in how difficult it is to just watch your mother just go away little by little and become someone who you do not know. My sweet mom just became like a little girl, and I became a nurse and her daughter as dad needed help to care for her. Dad and I talk about her all the time and their life together, their love story and she is with him in his memories and dreams. My prayers and love go out to you
I find I semi forgive my mother’s abuse, but she soon does something that brings back the panic and stress. I suppose I would like to change my perceptions of her, or think I ought to, but it isn’t going to happen she is still the same so what is there to change. I notice changes in what she can do and think she managed quite well before, but it means nothing, just a fact. I’m sure it is far harder for those who care for their parent, but as she could be anybody (after much therapy) I don’t think I care to change any perception of her.
Lordy yes, and I haven't even been taking care of my parents yet. Watched my parents take care of my grandmother for years at the great detriment of their own health.
I became guardian and conservator for a relative with dementia and that about ran me into the grave and she was living in a MC and then SNF.
Then I immediately started helping another relative with doctor appointments and keeping her meds straight and 1,000 other daily needs that were never-ending.
I now see that there ARE things worse than death. Living too long with a body and brain that no longer work is not living at all. Being a huge burden on others would be awful as well.
I haven’t dealt with dementia, but I still respect the thoughts for those who have. My change in perception was a bit different with my dad. I came to see how much he was dismissed, not heard, or downright ignored. He was mentally intact, but it was often the case that people wouldn’t take a moment to hear his thoughts. He definitely had a lifetime of wisdom to share and it was sad seeing others perceptions of him being too elderly and unimportant to be heard
This is something I have found with my father. This amazingly kind and brilliant man, has been reduced to people yelling at him ( his hearing is so poor) and asked if he ate his applesauce.
My Mom has A-fib and it seems to me this impacts the blood flow to her brain. When this happens she doesn't think clearly and her emotional reactions aren't "like her". Skipping ahead several years of this, it's almost like areas of her brain have died. She is on oxygen almost all the time. Her body isn't processing temperature. She thinks it's cold and the AC was set at 78. She misplaces things and accuses people of stealing. She hides things and forgets where she hid them and then that re-ignites the fear there are thieves. She claims she hears and sees things that aren't true: people entering the room from a closet, mice running across the floor, and people outside the window. We just listen because we can't convince her otherwise. On her "good days", Dad insists he can be her caregiver because he doesn't want to spend the extra money to have her in MC. When we get emails that she's almost left the room without any clothes, accusing him of seeing other women, up in the middle of the night and sleeping in the day, and such- we remind him that MC is available. Mom is afraid of MC, they have taken her in there so she sees that it is the same but more protected and quiet. I think at some point it will not be an option. They are each other's POA so we have no input on their decisions.
Inthemiddle, due to poor circulation, your mom is actually cold. Her heart is not efficiently pumping blood to her extremities. Don't turn the heat up but, give her warm clothes and covers.
My dad used to be a penquin, I had to wear sweatshirts to visit when it was 100+° outside because he kept the temp at 63°. Then A-Fib, then he was comfortable when it was 90° inside.
Best of luck, temperature is a difficulty challenge.
Edit: A-Fib does cause vascular dementia. One of those little things the medical profession neglects to mention many times.
Wow…when moms dementia took away her ability to truly engage in meaningful insightful conversations I lost my confidant, my advisor, my friend... She had always advised me and been a great friend. At 70 I am now her protector..her advisor. The grieving for me was profound. I felt my mom had already died. I engaged in counseling so I could joyfully take on my new role. I miss my mom. This new person is a shallow version of my mom. I often feel like her mom figure. She seems more childlike now. Good Luck..
I can relate to this. My Mom's dementia has a grip on her personality. She and Dad are in AL. I find that I wait for her to talk, to I see if she's thinking clearly or not. When I was taken by surprise by her confusion it really had a negative impact on me emotionally. If she's quiet and listening to me, it doesn't mean she's processing what I'm saying. I have felt that my Mom has died because the Mom that raised me isn't available anymore.
I now think people live way too long beyond their ability to care for themselves. They then become a huge burden on their children and society.
People seek medical treatments so that they can stay alive. I think they need to look beyond that. Staying alive and being able to take care of themselves. Not just alive and demented for years on end and be a dead weight on society.
I never thought about planning for my end of life until I took care of my mother.
Yep. I absolutely want to get euthanaised if I end up with something like dementia. It is awful now how medical science can prolong the suffering for so long just to keep people existing when it could be used to allow a dignified peaceful departure.
Prior to my dad’s stroke, I never thought of him being mentally not there. He was weakening physically, and I had forbidden him from going up any more ladders (he had a habit of falling off them), but mentally, he was 100% there.
Now, he becomes obsessed with the drapes around his hospital bed, or his blankets, playing with the hem for hours. I treat him more like a child than my dad, and it breaks my heart. I don’t know where my dad has gone or if I’ll ever get him back. If he can swallow a spoonful of applesauce without dribbling it, instinctively I say, “Good boy!” and he doesn’t think anything of it.
I guess it depends on what you mean. In our case, MIL definitely protected DH and SIL, and then eventually the rest of the family from FIL's true personality for many years - we had inklings of who he really was - and frankly DH and SIL had blocked out and compartmentalized their childhood abuse to protect their own mental health and when BIL and I came into the family years later the narcissism and abuse was covered up pretty well until MIL passed away....so yes when it all came to light it was very shocking and our perceptions have changed dramatically in the last 5 or so years. That alone has made it very difficult to really differentiate between his personality disorder and our growing concern that he has dementia. His self imposed isolation and moving BIL and SIL into his home added to the changes in his personality and kind of sealed the deal to where we are now. But none of this was overnight. Most of this was there for many years and there was just a lot of skilled cover up on MILs part and frankly a lot of friendly family dinners and not a lot of deep time spent with him for many years to keep us from seeing it. Now we spend so much concentrated time with him it's hard to miss any changes at all.
So when you say profound shifts, is this something that happened overnight in their behavior? Are they drastic personality shifts? Health shifts? Has something changed in YOU that changed how you see them? Are you providing daily care and seeing these changes or visiting and seeing changes between visits?
Some amount of perception shifts about our parents as we age I think is normal. As we get older we see our parents through a new lens any way. But I don't get the feeling that is what you are talking about.
I'm not sure what kind of shifts you are talking about but over the years I was caregiving I went from feeling that my mother was one of my best friends to wondering if everything I thought I ever knew about her was a lie. It's taken me years of distance to regain equilibrium (she died in 2018).
Well its a bit of a strange one. I did not have a good relationship with my parent. It was an abusive relationship. I did not have much to do with the parent from 18 onward. However, I ended up assisting with matters when my parent got severe alzheimers, so I spent some time around them then.
It was really strange to me to see them in the state they were in. It was strange for me to see this person who I had always been scared of and sought approval from being a drooling, nonsensical mess in adult diapers. it made me think, gosh what a waste of energy all of that was all those years. I guess it wasnt really relevant then back in the past, but that was the thought I had at the time.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
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You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Fast forward to her 911 situation in April. She almost died, and the nurses in the hospital told me she was refusing to eat and telling them she wanted to die. Something in me shifted profoundly. Some primal need to protect this utterly defenseless woman who’d given me life. Given who she is, I knew she wouldn’t make it in the hospital or in a nursing home alone. I flew over as soon as I was vaccinated, and lived in a hotel for a couple months to help give her her best shot at more life. I moved her to a SNF, back to hospital, back to SNF, and when it became clear rehab wasn’t working, I moved her into a care home and signed her up for hospice.
During the time I was with her daily, I completely fell in love with her. I treasured her smiles. I discovered she was funny. Her annoying quirks became endearing. As she grieved how helpless and purposeless she’d become, I started to realize how resilient, driven, and independent she had been. As she looked at herself aghast in the PT mirror, at how old and emaciated she’d become, I saw her as beautiful. When she smiled, she was radiant. Friends and nurses called her “cute” and my husband called her “full-on adorable.” Possibly for the first time ever, at middle age, I realized I was proud of my mother, and I felt pride in being her daughter.
Sometimes I still wonder wtf happened. I went from decades of feeling cooly detached about my mom to needing to drop everything and run to her side. It was completely traumatic to decide to leave her in someone else’s care too, and only possible because she couldn’t tolerate me having dropped my career to care for her. So much of her life had been about supporting her children and their professional ambitions. For which I love her all the more.
I was totally lost with this new situation.. Now what? I had to have my folks guide me, but they tended to be very hush hush about mobility issues, they didn't want anyone thinking they were old.
Mom had lost most of her eye sight and pretty much all of her hearing, so communication was impossible. I knew she had been falling due to the black/blue marks on her arms. She never said anything, and neither did my Dad about her falls. Dad was open about his tumbles, rarely did he get hurt, he pretty much joked about it.
My folks have since passed, but now my sig-other and I are seeing ourselves aging. We do laugh about things we mis-hear on the TV. I have tripped over the cat, she is like a Roomba vacuum darting out from nowhere. Our eyesight is not user-friendly. And forget about driving at night. Oh, and squatting down to do something at floor level, now a challenge trying to stand up.
I think I might have a conversation with sig-other grown daughter about aging, and what we are experiencing so she isn't surprised by things we really don't want to do like we did in the past.... like having family over for Thanksgiving or Christmas. Entertaining is no longer fun, it's plain exhausting. Especially when the family sits glued to their smart-phones and not helping..... [sigh]
The role reversals that come with an aging parent are maybe the natural order of things even if it's very sad. I found it very hard to accept the changes I saw in my mom when she became very old. She didn't seem to care as much, her eyes didn't light up when she saw me. In fact they didn't light up at all any more. When she died I started questioning who my mom had really been cause I didn't have the reassurance of her love anymore. I started to wonder if maybe I had been wrong about her all my life and that the person I saw before me in the nursing home who was quiet and uncooperative and didn't seem kind and loving anymore was really who she was.
It's been over six years since she died and I'm just beginning to realize that she was a wonderful, kind, hard working, wise woman before she got old and just because aging messed with her mind doesn't mean that she wasn't still that just before she died. I know underneath all the ravages that took her away there was still that woman in there.
If I were to start thinking otherwise would seem like a betrayal of sorts. I know everyone's story is different but that's how I would feel.
There isn’t any left anymore
She wilts till she turns to dust
The dust will open the door
Why, how, what?
No answers, just broken shards of silence
Is this it? I ache till I can ache no more.
The devil has taken her soul.
The grief is mutual
To see her suffer, Is to suffer
The love is there, the like barebone
The devil has taken her soul.
Don’t ever let me come to this.
Will that even be me??
I will not even know myself anymore.
The devil has taken her soul
I have given this my life-My intent to bring her back to life, to shore.
Will she ever be mama again? Or is this just impossible to restore?
The devil has taken her soul
I cringe to remember her
The lady- I love, I love so much. Still do from my core…. her actions - her actions, I deplore
The devil has taken her soul.
Will we meet again one day?
All clean and bright and fresh?
Fresh hugs, warm tears and joy-
I see through the peephole
The devil has taken her soul.
I became guardian and conservator for a relative with dementia and that about ran me into the grave and she was living in a MC and then SNF.
Then I immediately started helping another relative with doctor appointments and keeping her meds straight and 1,000 other daily needs that were never-ending.
I now see that there ARE things worse than death. Living too long with a body and brain that no longer work is not living at all. Being a huge burden on others would be awful as well.
Being her care giver now I think she is the devils daughter.
My dad used to be a penquin, I had to wear sweatshirts to visit when it was 100+° outside because he kept the temp at 63°. Then A-Fib, then he was comfortable when it was 90° inside.
Best of luck, temperature is a difficulty challenge.
Edit: A-Fib does cause vascular dementia. One of those little things the medical profession neglects to mention many times.
People seek medical treatments so that they can stay alive. I think they need to look beyond that. Staying alive and being able to take care of themselves. Not just alive and demented for years on end and be a dead weight on society.
I never thought about planning for my end of life until I took care of my mother.
Now, he becomes obsessed with the drapes around his hospital bed, or his blankets, playing with the hem for hours. I treat him more like a child than my dad, and it breaks my heart. I don’t know where my dad has gone or if I’ll ever get him back. If he can swallow a spoonful of applesauce without dribbling it, instinctively I say, “Good boy!” and he doesn’t think anything of it.
It’s so unfair.
That alone has made it very difficult to really differentiate between his personality disorder and our growing concern that he has dementia. His self imposed isolation and moving BIL and SIL into his home added to the changes in his personality and kind of sealed the deal to where we are now. But none of this was overnight. Most of this was there for many years and there was just a lot of skilled cover up on MILs part and frankly a lot of friendly family dinners and not a lot of deep time spent with him for many years to keep us from seeing it. Now we spend so much concentrated time with him it's hard to miss any changes at all.
So when you say profound shifts, is this something that happened overnight in their behavior? Are they drastic personality shifts? Health shifts? Has something changed in YOU that changed how you see them? Are you providing daily care and seeing these changes or visiting and seeing changes between visits?
Some amount of perception shifts about our parents as we age I think is normal. As we get older we see our parents through a new lens any way. But I don't get the feeling that is what you are talking about.
It was really strange to me to see them in the state they were in. It was strange for me to see this person who I had always been scared of and sought approval from being a drooling, nonsensical mess in adult diapers. it made me think, gosh what a waste of energy all of that was all those years. I guess it wasnt really relevant then back in the past, but that was the thought I had at the time.