Dealing with parents dealing with Dementia

[bigtmac19]

My sympathies to anyone going through this. This thread gives me flashbacks of my parent’s last years and how hard it was, and makes me fear putting my boys through something similar as I get older and older.

I truly think it’s a cruel twist that medicine keeps people alive for much longer but certainly doesn’t address quality of life. It seems to only exist to make nursing home owners obscenely wealthy.

Everything my father’s life ended up being in the last few years was everything he told us he never wanted.

[jonesy]

Ugh, my in-laws dementia was a big cause of wiping out my 20 year marriage, since one of us ended up being the primary care giver and the stress and workload was too much. I feel for you all. Try to not take anything that is said by the person or any of the rest of the family to heart.

[redforever]

Originally Posted by Buff

I totally get this part. My mom understands that my dad has dementia but struggles with who he has become. He's not the same, yet he's not that terrible. She's able to care for him, but resents that and is dealing with a lot of anxiety. Being the only child, I'm dealing with a lot of pressure. I call her 6 or 7 days per week and visit at least once per week yet I get the feeling from her that I have to quit my job, disown my kids and get a divorce so I can focus 100% of my time on them.

She has a lot of ups and downs and tries to make me feel guilty about how she feels. It angers me when she does that, yet I'm now seeing a lot of what she did to my wife. We used to always leave their place (or they leave ours) and my wife would be hurt because of something my mom said to her. She would do it in private, and now she's doing the same to me. As soon as she gets someone in private she says mean things, or insinuates mean things in a very passive aggressive way.

After Christmas my kids said she was such an angry person, one of them wondering what he did to make her so mad. She never even tried to interact with them at all.

If this weren't my mom but a friend I'd just cut her out of my life. Unfortunately I have a duty to take care of her in spite of how she is behaving towards me. I also see a duty to be an example to my kids to show them how to care for my wife and I when we're old and difficult. A duty to make sure I'm senile that I don't treat my kids terribly and have understanding when they can't be there for me 24x7x365.

Have you thought about providing some respite care for your mother? a couple of times a week?

[Buff]

Originally Posted by redforever

Have you thought about providing some respite care for your mother? a couple of times a week?

Yes. She refuses it.

Initially she was on board with my dad going to some programs but he didn't want to and they wouldn't book him into those unless the doctor signed off on his lack of capacity to make decisions. The doctor was more than willing to do so but then my mom refused to get my dad signed up for those programs. She seems to like to be a martyr.

[redforever]

Originally Posted by Buff

Yes. She refuses it.

Initially she was on board with my dad going to some programs but he didn't want to and they wouldn't book him into those unless the doctor signed off on his lack of capacity to make decisions. The doctor was more than willing to do so but then my mom refused to get my dad signed up for those programs. She seems to like to be a martyr.

Some will come to your residence and basically babysit while the caregiver gets some time off to either shop, socialize, whatever.

[Buff]

Originally Posted by redforever

Some will come to your residence and basically babysit while the caregiver gets some time off to either shop, socialize, whatever.

Now that I think of it, she does get out a couple days per week, when she feels up to it, to go play cards with other ladies in the condo. Not much but it's something. My dad just sits on the couch and watches TV or does number puzzles when she's gone. He knows he has dementia and has stated that he's scared of getting lost so he doesn't leave their unit when she's not there. He never has been lost and is capable of taking the garbage downstairs or going to get the mail is is usually back quite quickly but won't do that unless she prompts him.

She says she's feeling more energetic the last 10 days too. They got Covid in September and she was quite worn out since recovering. They're in their 80s so its understandable to take so long to recover.

[CaptainCrunch]

Originally Posted by redforever

Have you thought about providing some respite care for your mother? a couple of times a week?

God we tried that with my Dad.

It failed so badly, he manufactured reasons to hate the idea, and the people that would help out mom. He felt he needed to be there 24 hours a day.

We even tried to bring in home care, and my Dad would completely sabotage that.

I think with my Dad especially he felt that we were basically calling him a care failure because we wanted to bring in people to help.

When my Dad tried to commit suicide, and I had him in the MHC in the hospital. At the end when they were going to release him, I asked them about other programs and they told him and me that he could sign up for voluntary respite where he would stay in a facility and get help and coping skills to deal with my Mom's situations and he flat our refused.

Its tough, and when you hear about a care giver fighting against help or respite, its really not that uncommon.

[CaptainCrunch]

So, here I am . . .

I haven't been in this thread for a while, not because things were stable or good, but because its just been a matter of coping with the horribleness of this disease, the impact on my Dad who has his own instabilities, and just because its hard to write about.

My Mom is almost gone, its a matter of days or even hours.

Somehow, she picked up an infection, and was rushed to emergency last weekend, and they tried to treat her. She was in tremendous pain, crying and not being able to lie still.

Today we moved her from anykind of treatment to comfort care in the hospital. And now she's just sleeping, not crying or calling out, but sleeping. She'll try to wake up and we'll stroke her hair and tell her its ok to go to sleep.

She now has a very short amount of time left.

Weirdly I felt tremendously guilty about this. A week ago I was talking to my sister about how Dementia has now completely erased the feisty sometimes hilarious, caring woman that raised me, and how she didn't know who anyone was, rarely talked, and our visits were short because she just wanted to go to bed. She had withered down to next to nothing. I remember talking to my sister and saying that though I'm not a religious person, thought my mother was, that I had actually prayed that if there was a god it was time to end her suffering and take her. And here we are after 4 days of her being tortured by this infection that the end for her is in sight.

Right now, I don't even know how to reconcile it.

My Dad hasn't seen my mother for over a month, he became convinced that because she didn't know him anymore and because she was agitated the last time he was there that she hated him and didn't want to see him. At the same time when my sister and I went to talk to him about it, he told us to get out of his life.

I respected that and didn't talk to him for weeks, but I decided that even though he'd chased my sisters off that I couldn't see him living and dying alone and started visiting him with limits.

I phoned him and told him today what's going on and I'm taking him to see mom tomorrow and though she might not be awake that he can provide comfort and maybe get some closure for himself.

Now we wait, and hope and for some pray.

I wanted to really come here and talk about my mom a bit, but its not the time.

But I really actually wanted to come here and say . . .

We don't tell people that we're close to that we love them enough. Sometimes we even avoid it. We also don't forgive people enough not because they've earned forgiveness, but sometime we need to just go through the act of forgiving to unburden ourselves, and unburdening them.

I know I'm all over the map here. Its weird, I'd think that getting the news that my mom is dying would break me down, that I'd be a wreck, and yes, I'm sad, and yes I'm worried how each member of my family from my Dad to my 3 sisters, who at times I have big problems with is going to react.

Do me a favor, I know that sounds weird, but if some good comes out of this whole mess for me personally is. Tell your Mom or Dad or Sister or Brother that you love them and you value them. Do something nice for them.

I'll probably put down some memories of my mom in this thread. Not the awful ones that happened after Dementia really got a hold on her. But maybe some of her wisdom, or some of the weird adventures we had once when I got lost driving her home from Coaldale and we wandered 200 miles off course because of my pride (ok people there were no GPS systems when I was younger). Or some of the incredible made up words that she'd use when she was upset with us kids. Or the time when I struggled with math and my sharp brilliant mother took me back to the beginning.

I don't know what else to say here. except talk to you soon.

PS my mom would probably be really upset at my instances of bad grammar,

[Draug]

My condolences CC. I've had experience with this as well and can imagine everything surrounding what you typed.

I don't know you from Adam, but youre in my thoughts, and yes, my prayers. And, so is your entire family.

My only advice is do whatever helps you all as a group. I'd say you made the right call with your Dad.

[Snuffleupagus]

I don't have any personal experience but my sister was a nurse in an old folks home for 35 years and it's her belief there should be an end of life pill offered for people suffering from alzheimer's and other forms of dementia, according to her it's the worst of the worst the way it tears apart the person and their family.

[DoubleF]

I hope you find those things that puts a grin on your face every time you think of your mom CC.

Pardon the pun, your Coaldale driving comment took me for an unexpected turn. I read that and it invoked a similar memory of mine and a few others. Jumping on hay bales in the Coaldale area, sitting in fields eating ice cream from a cup with those weird curved popsicle sticks (not even a spoon)... it might be a good idea to go out in that area for a drive this summer. Your comment also made me think of the fact I'm beefing over something dumb with my mom and your post made me realize it's time to let it go and hug it out.

Ah ####. I'm tearing up... and my situation isn't even remotely close to yours at all. If it even gives insight into your situation CC, that's brutal.

You'll be in my thoughts CC. I hope you and your loved ones find that grin.

[D as in David]

Originally Posted by Snuffleupagus

I don't have any personal experience but my sister was a nurse in an old folks home for 35 years and it's her belief there should be an end of life pill offered for people suffering from alzheimer's and other forms of dementia, according to her it's the worst of the worst the way it tears apart the person and their family.

Looking at the Alzheimer Society Canada page, it looks like that as of March 17th, the MAID program includes mental illness, including dementia. I'm not 100% certain as it's confusing to me as there is also a reference to 2024. Hopefully, dementia has been included in the program.

[CaptainCrunch]

My Mom died today at about 1:00PM. She fought hard til the end and it felt like she waited for all of us kids and my Dad to show up. Once we were there, Once we had a chance to talk to her and tell her that we would never forget her, and that she would see her sisters in heaven. She stopped breathing.

Its strange after 3 years of dealing with this awful disease, her struggle is over.

Even with all of our family at odds right now, we all came together for her.

Its strange, I was dreading this day for a while, but even with the sadness, there's a bit of a feeling of relief. She's not being tortured anymore by her mind and her body.

My mom wasn't perfect, she had her struggles. both my parents do, and my Dad is still dealing with his.

But when I think of my mom, I think of

She loved, cooking for huge family gatherings, and having the family over for a huge meal around a huge table. She loved to cook and was amazing at it. Nobody could beat of Swedish Meatballs. Or her Stuffing and Turkey. Or her roast beef. Her cheese cake, and her apple or blueberry pies rivaled any that I've eaten anywhere else.

She was tough on me growing up. I wasn't how you'd say it, a great student. In grade 3 I had passing grades just barely, and my mom demanded I hold her back. When I heard that I was pissed, I remember not talking to her for days. But she was right, I learned a valuable lesson from her that day, and throughout my life.

I remember her coming out to my sporting events, and when I was in plays. Or when I tried my hand at amateur night at Yuk Yuks (Though she heckled me brilliantly).

I remember when I joined the army and she say down with me, and told me that she would worry about me every day, even though I told her it wasn't dangerous.

My friends would call her the tank. My mom was always skinny with lots of energy. But when she got mad at me, she would chase me like a tank, I'd throw obstacles behind me but she was relentless, and incredibly fast.

I remember when my mom would get forms from school to fill out with parent information and she always wrote "None of your damn business" in the space for her age. She was 39 for about 15 years.

I remember driving her home from Coaldale and missing the Fort McLeod turn off and driving an hour off track, and my mom laughing at me and telling me that at least we were lost together.

When a girl that I dated overdosed a year after I stopped seeing her, I was upset, but Mom was there with unconditional love and comfort.

When I started coaching football, my mom became a football fan, she started watching Stampeder games, and would come out when she could when I was coaching to cheer our team on. Then she would ask me if all of that yelling was really necessary.

I was going through some stuff today, and she had kept a letter from my grandma to my grandpa who had gone back to Germany, Grandma was complaining about her daughters being out til three in the morning partying with those boys from that other farm, and that my mom was a bad influence.

My mom loved to dance, and loved music and encourage us all to play the piano. I hated the piano and was determined to quit, so I came up with a plan. I learned one song Hans Christian Anderson's "Silver Skates", and I played it an hour a day over and over 7 days a week for a year before my mom finally gave him and let me off the hook. I regret not learning the piano, my sisters are very good, and I can play chopsticks and Silver skates.

I remember my mom trying to teach me math using apples when I was failing math. Me being so frustrated and her gentle encouragement as we started over from step one over and over again. She told me she was over the top proud when I got my degree.

When you grow up as the lone boy and the youngest child with three older sisters. Your life is frankly hell. but Mom was always there to shield me from the worst of the torture, though she missed the time is the second grade when my sister gave me an impromptu and horrible haircut the night before school photos. But she still called that awful picture her favorite decades late.

One of my favorite images of her was after we adopted a Rhodesian Ridgeback puppy and she was sitting outside in a lawn chair with a rye and ginger in one hand and the puppy curled up in her lap stealing licks out of her drink. That dog grew to be a 60 pound brute, who was incredibly protective of her, and never left her side.

I don't know if this is an epilogue to this string, or if I'll come back to it.

But I hated what this disease did to my formerly energetic, whip smart accountant of a mother who wouldn't take guff from anyone. She was a farm girl raised by her German immigrant parents, with 3 sisters who she protected and loved. She was a fierce protector of her hometown of Coaldale. I got the famous mom stare when I said once that Coaldale always smelled like over ripe cowpoop.

I said it before and I'll say it again. call your mom she thinks of you all the time and she worries. Tell her you love her, get her gifts for mothers day and thank her. Or if your mom is gone, take a moment to think of her.

RTB 1934 -2023 RIP

"It is a far, far better thing that I do, than I have ever done; it is a far, far better rest that I go to, than I have ever known."

[Terradude]

My sincere condolences CC. You've done your mother proud.

Caring for your parents is never easy, making decisions on their behalf is never without consequence, we can only do the best we can do.

Take time for yourself as difficult days are still ahead.

For the rest of us, tell those who we love that you love them. They can never hear that enough.

[RichieRich]

Wow CC. thanks for sharing and pouring out your heart. I hope you are able to share that with your family as it was very touching. I hope you can also find peace knowing all she did for you and taught you right through to the end. Take some time now to deal with your emotions and for sure find some inner calm again.

[DoubleK]

Lost my mom during the pandemic.

Thinking of you CC.

[OldSam]

CC, I really feel for you. My mom has been gone for a while, and near the end, our family all came together to tell her it was OK to go, that she was a great mom and raised all of us really well. Remember all the wonderful thing she did, and forget about her sinking into dementia. A terrible thing to watch anyone go through. You have my sympathy. Never feel bad for doing the right thing, as hard as it might have been.

[Caged Great]

I am so sorry for your loss CC. I have been dealing with a similar such situation all by myself over the past year and a half and it has been the toughest thing that I've ever had to go through so I completely relate to all your pain. At least she is in peace now.

[Dion]

Lost my mom 2 years ago.

Sorry for your loss CC. Take with you the good memories you have of your mom.

[Snuffleupagus]

Originally Posted by CaptainCrunch

My Mom died today at about 1:00PM. She fought hard til the end and it felt like she waited for all of us kids and my Dad to show up. Once we were there, Once we had a chance to talk to her and tell her that we would never forget her, and that she would see her sisters in heaven. She stopped breathing.

Its strange after 3 years of dealing with this awful disease, her struggle is over.

Even with all of our family at odds right now, we all came together for her.

Its strange, I was dreading this day for a while, but even with the sadness, there's a bit of a feeling of relief. She's not being tortured anymore by her mind and her body.

My mom wasn't perfect, she had her struggles. both my parents do, and my Dad is still dealing with his.

But when I think of my mom, I think of

She loved, cooking for huge family gatherings, and having the family over for a huge meal around a huge table. She loved to cook and was amazing at it. Nobody could beat of Swedish Meatballs. Or her Stuffing and Turkey. Or her roast beef. Her cheese cake, and her apple or blueberry pies rivaled any that I've eaten anywhere else.

She was tough on me growing up. I wasn't how you'd say it, a great student. In grade 3 I had passing grades just barely, and my mom demanded I hold her back. When I heard that I was pissed, I remember not talking to her for days. But she was right, I learned a valuable lesson from her that day, and throughout my life.

I remember her coming out to my sporting events, and when I was in plays. Or when I tried my hand at amateur night at Yuk Yuks (Though she heckled me brilliantly).

I remember when I joined the army and she say down with me, and told me that she would worry about me every day, even though I told her it wasn't dangerous.

My friends would call her the tank. My mom was always skinny with lots of energy. But when she got mad at me, she would chase me like a tank, I'd throw obstacles behind me but she was relentless, and incredibly fast.

I remember when my mom would get forms from school to fill out with parent information and she always wrote "None of your damn business" in the space for her age. She was 39 for about 15 years.

I remember driving her home from Coaldale and missing the Fort McLeod turn off and driving an hour off track, and my mom laughing at me and telling me that at least we were lost together.

When a girl that I dated overdosed a year after I stopped seeing her, I was upset, but Mom was there with unconditional love and comfort.

When I started coaching football, my mom became a football fan, she started watching Stampeder games, and would come out when she could when I was coaching to cheer our team on. Then she would ask me if all of that yelling was really necessary.

I was going through some stuff today, and she had kept a letter from my grandma to my grandpa who had gone back to Germany, Grandma was complaining about her daughters being out til three in the morning partying with those boys from that other farm, and that my mom was a bad influence.

My mom loved to dance, and loved music and encourage us all to play the piano. I hated the piano and was determined to quit, so I came up with a plan. I learned one song Hans Christian Anderson's "Silver Skates", and I played it an hour a day over and over 7 days a week for a year before my mom finally gave him and let me off the hook. I regret not learning the piano, my sisters are very good, and I can play chopsticks and Silver skates.

I remember my mom trying to teach me math using apples when I was failing math. Me being so frustrated and her gentle encouragement as we started over from step one over and over again. She told me she was over the top proud when I got my degree.

When you grow up as the lone boy and the youngest child with three older sisters. Your life is frankly hell. but Mom was always there to shield me from the worst of the torture, though she missed the time is the second grade when my sister gave me an impromptu and horrible haircut the night before school photos. But she still called that awful picture her favorite decades late.

One of my favorite images of her was after we adopted a Rhodesian Ridgeback puppy and she was sitting outside in a lawn chair with a rye and ginger in one hand and the puppy curled up in her lap stealing licks out of her drink. That dog grew to be a 60 pound brute, who was incredibly protective of her, and never left her side.

I don't know if this is an epilogue to this string, or if I'll come back to it.

But I hated what this disease did to my formerly energetic, whip smart accountant of a mother who wouldn't take guff from anyone. She was a farm girl raised by her German immigrant parents, with 3 sisters who she protected and loved. She was a fierce protector of her hometown of Coaldale. I got the famous mom stare when I said once that Coaldale always smelled like over ripe cowpoop.

I said it before and I'll say it again. call your mom she thinks of you all the time and she worries. Tell her you love her, get her gifts for mothers day and thank her. Or if your mom is gone, take a moment to think of her.

RTB 1934 -2023 RIP

"It is a far, far better thing that I do, than I have ever done; it is a far, far better rest that I go to, than I have ever known."

Man, hard to read without thinking of my own mom but I read it twice, massive condolences man, she was a rock for sure.