Off-Topic OT: Dementia/Alzheimer’s and Memory Care (long and sad)

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Sep 10, 2020
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I don’t even know where to begin. I thought I had hit rock bottom earlier this year trying to care for my dad who has frontal lobe dementia. He had forgot my birthday. I didn’t want anything from him but just a call from him to wish me a happy birthday. First year he has ever forgot my birthday in my 29 years. I texted my mom to call him and remind him so he could call me to say it. Just to hear him say happy birthday and pretend everything was normal for a moment. Fast forward to today. Since my birthday earlier this year a lot has happened. He was also diagnosed with cancer and today is his first radiation appointment. Monday-Friday for 6 weeks. I’m an only child and live and work full time in Tampa. Not only is his first day of treatment today but I finally decided to put him in memory care. He should’ve been in there months ago but I was completely overwhelmed and lost. I’ve been commuting back and forth from Tampa to Orlando for the past few months spending entire days at the hospital going to doctors appointments. I’ve been balling my eyes out all day. I had a full on meltdown in the grocery store on the phone with my mom who lives an hour away. Crying to each other saying I need her. I haven’t asked for much help since I’ve been going through this and today is the first time I asked for it. Balling my outs in a ******* publix. I’m watching the man who raised me die right before my eyes. I have to help him get dressed. I have to feed him. I don’t have any children but I imagine this is a lot like raising a child. I wouldn’t wish this disease on my worst enemy. Anyways, the reason I’m posting here is I just need to type it all out. Get it off my chest. And he’s the reason I’m a canes fan for life. My favorite childhood memories are with my father in the West End Zone back in the early 2000s. I can still picture Devin Hester running back that opening kickoff against UF and Brock Berlin doing the gator chomp. McGahee running down the sideline on that screen pass in 02. The wide left. Anyways I know other people have dealt with this on here and I guess I’m just looking for advice. My life has completely turned upside down and I’m lost.
 
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Hang in there buddy. My mother has Alzheimers and it has progressed very rapidly over the last 18 months. It's tough to see and to deal with. They took care of us as babies, nows our time to care for them. Stay strong and just cherish every chance you have to spend with him.
 
i can relate to a lot of this. here's my best advice:

-lean on family and loved ones. they know you're hurting and will be there to support you.
-likewise, be strong for your family, including your mom. she needs your support as much as you need hers.
-don't be afraid to communicate what you need. some friends won't know how to be supportive -- but that is usually because they don't know how to treat family situations like this.
-i had similar flip-outs at the CVS pharmacy and Winn-Dixie! i don't really have good advice on this one, but don't hold back on your emotions. grieving isn't really stages; it's a bunch of layers, and they come in waves. just maintain control on what you can.

praying for you and your fam.
 
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I don't have much more than thoughts and the sincere promise that I will be praying for you and your father. Here are my thoughts:

You are accomplishing more than you know by being honest about the helpless state you are in. As someone who just this year learned the extreme value and health in confessing a private battle with anxiety, the openness and vulnerability you've shown is probably going to save your life. Find people who can understand you, who love you, and who you will listen to. I have no idea what it's like to watch the giant of your childhood and manhood wither into his current state, but I know from your own words that he wants you to survive his death. Everything he's done is to infuse you with life, when it's time that will make more sense.

I've posted before that my dad is the only reason I'm a Cane fan. He took me to UM baseball games as a kid, one of my earliest memories is Sebastian picking me up and running me around the outfield during the 7th inning stretch. He used to tell me stories about games that happened before I was born, like the Michigan comeback, with such fervor and detail it made me feel like I had watched the game in the stadium next to him. He gave me so much outside of sports I could never recount it all here, and he died in a construction accident when I was 20, on the one day I wasn't there to help him.

Take the gift your father was and steward it well. Tell people about him, have a family, live like he lived. My grandfather was a monster, and my dad survived a terrible upbringing to become a great man. It is on those of us who have had incredible fathers to live like it, now and until the day we pass on.

I am weeping with you, friend, as we all are. I don't presume faith on anyone, but Christ is enough for this battle. Your father has given you everything you need to survive this battle. Rest when you can.
 
I went through the same with my mother Christmas 2018. Also in Tampa. In this case the decline was rapid and a mix of late stage Alzheimer’s and aggressive uterine cancer. Two months from ****.

Stay strong. You’ll get through it. Find all the support you can. Have you arranged Hospice care? You noted memory care.
 
Smile for him as much as you can when you’re in his presence. He will feel that and enjoy it on important levels. Show him images of you and other things he loves. I’m praying for you and your mother and sending love and positivity your way.
 
My father went through the same thing. I'll tell you this, though. I had a lot of fun watching reruns with him. I know it sounds crazy, but to hear him laugh like it was the first time he saw something funny really warmed my heart. Yes, it was sad, but there was nothing I could do about it.

I know it sounds minor, but watch some good old Cane games with your dad, and you'll see what I am talking about. Stay strong, be kind, and love every second you have with your father. I'd give anything to have 10 more minutes with my father, in any state.
 
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My prayers and thoughts are with you and your family.

I understand the father-son connection when it comes to loving the Hurricanes. My Dad took me to my first game in the Orange Bowl on a Friday night when we beat Alabama. I think that was 1955. We attended a great game in 1961, when we knocked off a highly-ranked Penn State team as we were led by our young, superstar George Mira. It was a terrific game. I still remember it.

I lost my father over forty years ago. I always think of how sad it is that he never lived to see the greatness of the UM teams starting in the 1980's.

I still think about that. My father used to write sports articles for the UM student newspaper, I guess it was called the Hurricane back then, in the late '30's or early '40's. He didn't tell me much about it, he just told me about an article he wrote. So, I am carrying on the tradition for my father. Together, we span about 80 or so years following and supporting the Canes.

Again, I am sad for your loss. There will be better days. And you'll always cherish the memories of your father and your times together.
 
Try this, OP

https://www.alz.org/help-support/community/support-groups

I think it’s best to talk to people or communicate with people that have specific experience in what you’re dealing with.

Good luck, and remember all things pass, you will adjust, that may sound harsh, but you will find the inner strength. Don’t be afraid to seek any kind of help you can find from people in the community and try for different resources.
 
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I echo everything everyone has said here. I drew a lot closer to God when my mother was dying from a brain tumor. No doubt it is and will be devastating. Be with friends and loved ones. The comment above about watching Canes games with dad is a good one.

There is a popular book that's helped many: The 36-Hour Day. It may help. Reaching out to others going through what you are through support groups can be heaven-sent.
 
I am in Tampa as well and just lost my father to Lung Cancer. 4 months of **** for everyone involved. I keep trying to tell myself that he is in a better place, but at the same time I wish I had him back. I’m not sure the missing him part will ever get better, but I agree with what others have said about family. You have to lean on family and friends bc no one wants to get too caught up in their own negative thoughts. I hope you find peace. God bless
 
I just have to say this after rereading this thread: you're an amazing, devoted son.

Your father is so lucky to have you. It also shows what kind of father he is to raise such a son.
 
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To give you a heartfelt I understand and feel you. About 7 years to the day was my mother in law's diagnosis. I'm driving my wife and step daughter to MCO in an hour to fly up to Atlanta as mom has come to the end of this nightmarish journey. No words or attempt to describe it would prepare anyone to handle it. I've lost a parent suddenly, that stings. This, this is a next level ****. Thoughts to you.
 
I don’t even know where to begin. I thought I had hit rock bottom earlier this year trying to care for my dad who has frontal lobe dementia. He had forgot my birthday. I didn’t want anything from him but just a call from him to wish me a happy birthday. First year he has ever forgot my birthday in my 29 years. I texted my mom to call him and remind him so he could call me to say it. Just to hear him say happy birthday and pretend everything was normal for a moment. Fast forward to today. Since my birthday earlier this year a lot has happened. He was also diagnosed with cancer and today is his first radiation appointment. Monday-Friday for 6 weeks. I’m an only child and live and work full time in Tampa. Not only is his first day of treatment today but I finally decided to put him in memory care. He should’ve been in there months ago but I was completely overwhelmed and lost. I’ve been commuting back and forth from Tampa to Orlando for the past few months spending entire days at the hospital going to doctors appointments. I’ve been balling my eyes out all day. I had a full on meltdown in the grocery store on the phone with my mom who lives an hour away. Crying to each other saying I need her. I haven’t asked for much help since I’ve been going through this and today is the first time I asked for it. Balling my outs in a ******* publix. I’m watching the man who raised me die right before my eyes. I have to help him get dressed. I have to feed him. I don’t have any children but I imagine this is a lot like raising a child. I wouldn’t wish this disease on my worst enemy. Anyways, the reason I’m posting here is I just need to type it all out. Get it off my chest. And he’s the reason I’m a canes fan for life. My favorite childhood memories are with my father in the West End Zone back in the early 2000s. I can still picture Devin Hester running back that opening kickoff against UF and Brock Berlin doing the gator chomp. McGahee running down the sideline on that screen pass in 02. The wide left. Anyways I know other people have dealt with this on here and I guess I’m just looking for advice. My life has completely turned upside down and I’m lost.
Tragic for all in your family. Take comfort from all the good memories and do your best to provide the best care for him going forward.
 
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