How Are You? That Heavy Holiday Question…
It’s been quiet here. The holiday gift guides remain in draft mode. Cards unsent, gifts unwrapped. I’ll get there. The biggest gift this year is GRACE.
The house is decorated because #weneedalittlechristmas to be honest. So “how are you” is a loaded question. For those who have asked, and those who have not but are deep in the sandwich generation–here is an answer. I am writing this selfishly, because it needs to come out. To let the proverbial steam off the boiler.
We moved my dad to residential memory care Friday. Perhaps we should be satisfied he’s well-cared for. I could pat myself on the back for finding incredible resources. Blah blah blah.
Friends have told me “well done, Sam.” “This is just what he needs now.” “You have made your parents your priority and it’s so commendable.”
That’s all bullshit. I have not done what I wish I could. It’s not commendable, they raised me. It is what we do. This is not the way it should be. What I FEEL is deep, wrenching pain, deep in my gut. I want to vomit. Punch things. Maybe even some people along the way. Definitely some people. That’s another story. Another day.
Dementia sucks. It strips its host of EVERYTHING. It is a parasite like all others, feeding and poisoning, feeding and poisoning.
It starts innocently enough—some short term memory loss. I mean, I lose my keys on the regular so what’s the big fucking deal? A few gentle reminders and all is well.
Give it a year. Two. Four. At a year, he repeats stories. At two, he’s scattered. Prompts. Things that have happened before seem new and interesting. This isn’t so bad, right?
Four years the bottom begins to drop. The prompting is crucial each day, but resented. Where is the kitchen? How do I like my coffee? Obviously he’s fine. He was brilliant. Successful. He does not need help.
Except he does. Names have faded. Routines obscured. He FEELS acutely, but KNOWS less. He senses change in the air like an electrical current and it scares him. And sadly, he doesn’t realize it actually scares us all.
My GOD fear is powerful. WHY is it the last thing we lose? Is it a primal fight or flight response? I haven’t studied this bastard disease enough to know, but as his daughter, and likely to inherit this parasite, I suppose I should. I already fight fear every day…
Why cannot LOVE hang on tighter? He needs more care. A safe place. More than she can physically manage anymore and it pains her deeply as well. In sickness and health–that’s the vow, right? Does that mean we can or should do it ourselves or simply provide safe, dignified care? I think it’s the latter and that means change. But he feels that change as a threat, not as love.
GUILT. Why wasn’t he asked what he wanted? He wants to go home! It isn’t possible. The bile rises to my throat as surely as his anger at the betrayal.
We wait. We pray. We are advised that our absence in these first days is BETTER for him and that hurts. We should be there, no? Each day right now is such a gift, we hate to surrender even one moment.
For now, we assure HER that SHE is loved. It is the disease that requires this drastic upheaval, it wasn’t anyone’s choice, least of all his. Or hers. We will throw ourselves headlong into making this Christmas really MATTER. Because it does. My lord does it matter.
***If Dementia or Alzheimer’s has touched your family, please find support and let me know. You do not have to travel this alone***
I’m sorry Sam—-this is really tough. Thanks for the honesty. 🙏
Sam, as always thank you for your rawness, blatant honesty and pain you always share with us, your followers. It’s sucks to know someone you care about is in Such pain. I truly wish I could help in some
Small way. ❌⭕️🙏🏻
Thank you for your honesty, Sam. We’re headed down the same path with my husband’s dad, and it’s terrifying, made worse by the fact that he’s an only child. Your description of the disease’s progression is sadly, very accurate. Thanks for the reminder that we’re not alone.
Hugs my friend. So beautifully, yet heart-wrenchingly spoken. I am a few years ahead of you and know all you are feeling. We have fully plunged into the nothingness. If I can do anything, just listen, please don’t hesitate to call. If you haven’t experienced this sense of loss, pain, and helplessness, it’s hard to comprehend. But hugs yourself. You are doing the best you can with this FUCKING awful disease. Love XO
I know I do not need to say “I am here for you.”. You know I walked this road once. Somewhat twice, though one was with Parkinson’s (another insidious disease!). The one piece that the Alzheimer’s Assocation does beautifully – yet most do not know about – is they have 24/7 staff on hand to support THE CAREGIVER! When you or mom feel this guilt ⤴️ You write about, when you are alone at 2am rehashing the sundowning or how to handle something else going on – CALL 1 (800) 272-3900. Those 2am calls where my difference in staying sane myself! Of course, I am ALWAYS here too. Yet they are skilled and 100% will answer at all hours. And knowing that you are not ‘burdening a friend’ (of course TRUE FRIENDSHIPS never see calls for help as burdens), it just is easier sometimes to have the objective and TRAINED third party.
Your heart and mom’s are held in mine, and all of you are in my prayers.
Barbara S Shafran
I feel ya, Sam. Jerry’s mom lived with this wretched disease for 7 years. So dis all 4 of her sisters. If only we could cut and paste an Alzeheimer body to an ALS brain…we could bring peace to some. Alas…you have your memories, and now is when you need them. xo <3
It’s the most awful gut wrenching disease and the fact that it slowly steals your loved one from themselves and from you, just makes it that much harder to bear. This monster started taking my mother slowly at age 65- subtle signs: the keys, the milk in the dishwasher Then the loss of direction, then the medication error as a nurse that ended her career she loved. Then in the inability to take care of the house, couldn’t evacuate the Florida house during a hurricane. all of this I’m 1500 miles away with a young child and a FT job. Let the older siblings handle it especially the one that lives close. Sister wants her to go to a facility. Nobody else wants this . Lots of family distress and arguments. Big brother comes in sells the Florida house which is in bad shape from the hurricane and moves her, husband and dog to Wisconsin. There’s little communication expect anger- how could he do this without consulting everyone else? Mom lives with him for 2 years and finally has to into a facility as they can’t control her angry sometimes violent behavior. She wanders and cries a lot. I only saw her a few times in those last few years- something I will never forgive myself for- I couldn’t handle it. she didn’t know me or my small son. I couldn’t cope- too hard for me. How selfish.
She died within 3 months or so in the facility. Sister wouldn’t attend funeral. Step father cursed me for coming due to my lack of support in her final years. The funeral was anything but comforting to me. Her caregivers were all there. The loved my mother and gave her why I couldn’t in those last few years- love. My brother, his wife and my niece all seemed at peace knowing they did so much to make her last years as comfortable as possible. Not me- I just felt guild and anger at myself for being there for her or my brother.
Now 13 years later, my guild and anger remains, the family is still torn apart. My sister and brother don’t speak. My mother’s siblings don’t speak to my brother. I am the only one that a relationship with all of them but missed the most important of all- the relationship with my mother
So sorry to hear about what you and your family are going through. Personally I cannot imagine, but as a nurse I have seen how it affects patients and families. I wanted to share a few things with you. 60 Minutes did a piece about Alzheimer’s and Dementia that was very good, it touched on the caregivers. There is a book, Brainfood, by Lisa Mosconi, that is all about nutrition and brain health. She is an associate director of the Alzheimer’s Prevention Clinic at the Weill Cornell Medical College in New York. She shares what they are finding in their research and what we can do to slow down/prevent memory loss, brain fog, improve memory, prevent cognitive decline, and lift depression. Lastly, as hard as it is to place a family member in extended care, my mom spent years working with Alzheimer’s patients as an activities coordinator and the stories she would share were always filled with activities that engaged and stimulated them and that they enjoyed. Prayers for you and your family.
Sam, I am really sorry to hear about your Dad. My parents are both gone but we never had to experience what it is like when the memory is no longer there. But aging takes a toll on all of us. I think Tim had the most anger when the mother he always knew could no longer be that person physically; seeing her age was absolutely something he could not handle. And although I hated it when my parents grew older, I didn’t have to deal with it on a daily basis because we were separated by 300 miles.
I know that there are no words to make this situation better for you. Or your Mom and Dad. But know that you are not alone. And I truly believe that God will get you through this. His plan for us is better than any plan we could think of; we just have to have faith.
Sam, Having gone through this with my grandmother who I adored over 20 years ago, I know how badly this hurts everyone. It’s the longest goodbye you’ll ever experience and your strength and faith is tested every single day. Thank you for being real and open. During the time we helplessly watched my grandmother fade away, I had family members who refused to accept that this was real and happening and, to put it bluntly, it was a shit show that left a lot of resentment that still lingers in the air decades later. Unlike my family members who refused to allow professional care and had the power of attorney to prevent anyone else from stepping in, you’re doing the best and only thing you can do for him, your mom, the family and yourself. One day, hopefully soon, modern medicine will provide the answers we desperately seek. Until then, we survive together and pray. Cherish what you have when you have it. Keeping all of you in my thoughts.
Thank you so very much. I know you all have been through this and I’ve thought of you often. Mostly feeling terrible about watching the damn notebook with you. UGH! I can now imagine how hard that was.
I am late to respond to this but thank you, as always, for being a wonderful resource! Hopefully someone will see your comment and use those numbers as well.
That’s what the CIRCLE does, my friend. love you!
So wonderful to hear from you! And we do feel so alone. We shouldn’t. We need to talk about it much more than we do.
I think we try to hide it for the dignity of our loved one…but that doesn’t help in the end. Do you still have my number? I’m here if you guys need to talk.
You do even in this very comment. Connection is critical.
My grandmother also had it, but a surgery with Gen An. sped it along very very quickly. She never really came back and lived out of state. This is different. I am struggling to deal with my sadness and anger, my fear of the disease, and ensuring we make all sorts of memories.
I treasure your words, prayers, and kindness always….
Wow thanks for all of this! I hope others see these resources and seek them out as well as I will!
I am definitely focused on the family connection.
oh Mindy…I’m sorry I’m late to respond to this. I took some time off over the holidays.
I feel every word of this. I am jumping in, but I promise you even if you had, it never feels like enough. I have to take breaks. For my dad, the facility has been good because we didn’t wait too long. The mood swings are real and scare people, which is why I think we, as a culture, don’t talk about it the way that we should.
This grieving process is so different. It’s up front and also forever. And hopeless. There is NO cure.
Please reach out if you need someone to listen–I get it. No matter how many years have passed.