I just need to write some stuff down.

BabstheBus

My mom is about to turn 88, alzheimers (I think possibly Lewy body), lives with me, is on Namenda and Seroquel which seem to calm hallucinations, perseverating, etc. Without those meds, it's bonkers around here. She is a lovely mom in many ways, but also the most self-centered person I've ever known (prior to this disease). It's just her and I here. She lives downstairs in an in-law apartment. I have Comfort Keepers come 2x per week for 2 hours, but I wonder about adding some more visits.

I work full time. I have a 17 year old that spends most of her time with her boyfriend. My husband passed away at 44 almost 6 years ago. My only sister moved to Florida last year. She is helpful sometimes, but has seen mom about 3 times since, for quick visits, not to give me a break. But so far, so good as far as this arrrangement overall, but I wonder how long I can do this. And I'm trying not to focus on how it all affects me and just be caring and loving, but I get frustrated often, snap sometimes, say the wrong things and correct mom when I shouldn't. Trying to stay peaceful. Starting to grieve for her memories. She talks a lot about the town she grew up in and thinks I should know all about it. She forgets a lot about the town where I grew up, which means she will soon forget my childhood, which means she'll soon forget about me. It's difficult (I am Captain Obvious). She was married to my dad for 38 years before he died in 2000, but she thinks she was only with him a few years. She has introduced me as her sister. She has called me by my fathers name several times. She did not recognize someone she has known for about 30 years recently. She often thinks she and I have the same dad and gets confused when I ask her if she is talking about my dad or her dad. She didn't recognize my sister and I in an old picture. Before these meds, she used to hallucinate often and vividly...examples of having sleep overs with children, would be frantic that she couldn't find the baby, hearing music, seeing blood in her bed and piles of blankets, dirt all over her walls and interact with all these scenarios...cleaning what isn't there, looking for babies, etc.

One day she had on 3 pair of undies. She thinks she still has her period sometimes. She has said she shouldn't have been allowed to adopt any babies because she didn't know how to look after them. She said she would've been happy with one child. I'm her second child. She has said she's been screwed out of inheritances, but hasn't been. She is subtle with insults, reminding me often how fat I am. The stories could go on and on, all the random weird things.

This is a pretty exhausting roller coaster. I find myself wondering how long each stage is going to last. She had a pacemaker put in a couple years ago. And now I realize that is basically keeping her alive longer to suffer with this disease. It's a shame.

BabstheBus

And just now...after I wrote this...

Mom admiring my new slippers "Those are cute, what size are those? You have small feet for a big girl."

mommyandme (m&m)

Ok, I totally hear you! My mom was a sweet, caring, giving, kind and calm personality her complete life, to all. But as her daughter I knew her and her passive aggressive ways, her judgemental tendencies and narcissism. They were stealthy but they were there. After moving mom here so I could care for her 24/7, it took awhile to differentiate between the affects of the disease and my own mommy issues. Luckily her best characteristics were what she usually projected. Thank goodness for her smiles. Those times when she criticized me cut to my core. “Who would wear their hair like that” (my hair)… “you’re not taking care of my cats”. … blah blah blah. I had to do a lot of emotional work on the fly and also stealthily. Eventually I got thicker skin and more patience and was able to see her through til the end. The CNA license I acquired, before the move, helped immensely. Also, another way I remained somewhat sane was to have help in daily. I had to get away to survive. I would highly recommend getting in more help for your own mental health, if you can. Possibly taking her to an adult day care could provide added stimulation and distraction and give you some more needed time for you. This forum is another reason I coped along.

Welcome to this place but so very sorry for the pains which brought you here.

BabstheBus

Thank you so much. I truly appreciate your reply and advice.

mommyandme (m&m)

I think I understand where you’re at in this journey. I also want to mention that although my mother didn’t know my name (or hers for that matter) for at least a couple of years, she knew I was someone special and her person. I know she loved me even though she never said it after moving here. I told her often with no reciprocation. She knew her deceased mother’s picture but not her deceased daughter’s picture. It was a complete heartbreak for all of us when my sis died. How could she misplace that memory. oh well. The loss of who our LOs were is devastating. Some have found counseling with a therapist that has some type of dementia caregiver experience, to be quite helpful. Experience is important, cause when you don’t know how this goes… well ya just don’t know.

Your daughter sure needs you still. My moms grandchildren, who were all adults (20-27 yrs old) when mom’s dementia journey started, just really didn’t know how to deal with it. I thought they would but I found out, nope. No fault of their own. I wonder how uncomfortable your daughter is with all this.

Your mom is so fortunate to have you in her corner, watching out for her. Sometimes placement is the best decision for everyone. Your mental and physical health are so important, probably number one in your scenario.

This disease is such a soul sucker in every way! 😔

scoutmom405

Im working on getting thicker skin at the moment & it's been tough. I recently added Respite Cna 2x week 3 hr ea. That's helpful for my mental health.

The hallucinations & delusions, even with going along with & or redirect gets mentally exhausting. I am learning a lot with therapy I recently started. Going into year 4 & started Journaling this past year. I started these things thinking I was just being proactive but realized the stress I've been holding on to.

I am new here & just reading responses of caregivers in similar situations has really helped me too.

kmurray

> @BabstheBus said:
> My mom is about to turn 88, alzheimers (I think possibly Lewy body), lives with me, is on Namenda and Seroquel which seem to calm hallucinations, perseverating, etc. Without those meds, it's bonkers around here. She is a lovely mom in many ways, but also the most self-centered person I've ever known (prior to this disease). It's just her and I here. She lives downstairs in an in-law apartment. I have Comfort Keepers come 2x per week for 2 hours, but I wonder about adding some more visits.
> I work full time. I have a 17 year old that spends most of her time with her boyfriend. My husband passed away at 44 almost 6 years ago. My only sister moved to Florida last year. She is helpful sometimes, but has seen mom about 3 times since, for quick visits, not to give me a break. But so far, so good as far as this arrrangement overall, but I wonder how long I can do this. And I'm trying not to focus on how it all affects me and just be caring and loving, but I get frustrated often, snap sometimes, say the wrong things and correct mom when I shouldn't. Trying to stay peaceful. Starting to grieve for her memories. She talks a lot about the town she grew up in and thinks I should know all about it. She forgets a lot about the town where I grew up, which means she will soon forget my childhood, which means she'll soon forget about me. It's difficult (I am Captain Obvious). She was married to my dad for 38 years before he died in 2000, but she thinks she was only with him a few years. She has introduced me as her sister. She has called me by my fathers name several times. She did not recognize someone she has known for about 30 years recently. She often thinks she and I have the same dad and gets confused when I ask her if she is talking about my dad or her dad. She didn't recognize my sister and I in an old picture. Before these meds, she used to hallucinate often and vividly...examples of having sleep overs with children, would be frantic that she couldn't find the baby, hearing music, seeing blood in her bed and piles of blankets, dirt all over her walls and interact with all these scenarios...cleaning what isn't there, looking for babies, etc.
> One day she had on 3 pair of undies. She thinks she still has her period sometimes. She has said she shouldn't have been allowed to adopt any babies because she didn't know how to look after them. She said she would've been happy with one child. I'm her second child. She has said she's been screwed out of inheritances, but hasn't been. She is subtle with insults, reminding me often how fat I am. The stories could go on and on, all the random weird things.
> This is a pretty exhausting roller coaster. I find myself wondering how long each stage is going to last. She had a pacemaker put in a couple years ago. And now I realize that is basically keeping her alive longer to suffer with this disease. It's a shame.

Anonymousjpl123

@BabstheBus

I am right here with you! Thank god my mother doesn’t live with me (she is in MC 10 minutes away) BUT I do think of it sometimes. Either way, caring for a LO with dementia is hard. Especially with a mom who wasn’t particularly supportive or empathic or attuned. But here we are. My mom is slipping into everything you just described (talks about our mom a lot - like “I wonder if our mom can bring us coffee again”).

She has really scary phases where she is deeply paranoid and anxious lately.

For a while I was convinced all of my decisions made her worse until I realized that’s bonkers.

The truth is this is my moms criticisms (funny @mommyandme (m&m) my mom had a lot of issues with my last haircut too 🤣) and subtle put downs still sting, but what is worse is how she still manipulated me with guilt. Sure, some of it is her brain being broken but some of it is just her.

Like you @BabstheBus i am the only family member involved. Siblings want no part of it. So it’s just me and her, which can be pretty bananas given how complex mother daughter relationships are on a good day.

I am glad you found this place. The fading memories, forgetting, mood swings - we all relate. I do hope you can find some extra hours of relief. You deserve it. And remember: her brain is diseased. Whatever she says, however she says it, it’s so hard to remember but at this point it is not personal. I love baths, that is my respite. I hope You have something like that.

BabstheBus

I don't have the patience for this forum apparently.

harshedbuzz

https://alzconnected.org/discussion/comment/195509#Comment_195509

HI and welcome. I'm sorry for your reason to be here but pleased you found this place.

I'm sorry if the forum is giving you trouble. Is there something one of us can do to help?

My dad was unfiltered and said terrible things, too. He knew who mom and I were right until the end: I'm not sure what's worse being on the receiving end of insults when PWD doesn't or does know who you are. I imagine either way sucks. Everything about dementia sucks.

It might help to think of the unkind things said as the disease talking. In her right mind, your mom probably wouldn't have thought, much less, said those things.

What helped us was humor. Dad's insults were so extra that we coped with a kind of gallows humor. We're weirdos and YMMV. I might call mom and ask her "Are you fat today or just old?" To which she might reply "Mostly stupid". Or she'd ask me what I was doing and I'd reply "I'm spending the $360K I stole from dad". The last Christmas dad was home, my niece's then boyfriend made waffles for brunch at my parents' house. We'd picked the time of day when dad was at his "best" and kept the gathering small but still he wasn't happy to see us. As the meal was served, dad looked at the boyfriend and announced "This is not your best work." Six years later we all still use this line when we make a mistake or something doesn't turn out as well as expected.

mommyandme (m&m)

https://alzconnected.org/discussion/comment/195509#Comment_195509

What do you mean?

mommyandme (m&m)

https://alzconnected.org/discussion/comment/195516#Comment_195516

Love the humor!

BabstheBus

Like I said before my mom before her disease was generally lovely and well-liked, but always very subtley nasty to me. Jealous. Manipulative. Self-centered. Totally not accountable for anything. And when she was called out on her behavior, she'd act like the victim. Never once has apologized sincerely for anything her entire life.

So of course, this stuff is getting worse. She lies about me all the time. I hear her tell the care giver that I screamed at her. Just now I heard her tell my aunt that I said to my mom that my aunt would tell her to shut up. Never said these things. This stuff happens all time. My aunt knows she's full of shit thankfully.

She has been saying for about a year that her mother just died (her mom died 1987) and wondered why no one told her and has been sad she didn't go to her funeral etc. Now, the last few days, she thinks her mom is alive. I keep redirecting and changing the subject.

Also, more frequently saying she was only with my dad for a few months (actually 38 years before he died in 2000).

Honestly, almost everything she says is either literal gibberish or total nonsense. It's so frustrating.

She having incontinence issues more frequently. Anyone know the most comfy brand of adult undies?

She's getting a tooth pulled tomorrow.

She seems to be getting weaker and needs to be reminded more often how to move her legs. Hey mom, your knees work, bend them.

I love the idea of joking about it as someone suggested above. But I think that only works if there's another family member to joke with. No one is here.

I know I need more outside care giver shifts. She only comes 2x a week for 2 hours, but I'm adding more. I also know her brain is broken and I need to be patient. Yup I know.

Anyhoo, that's it for now.

Emily 123

Hi Babs,

The difficulty moving her legs could mean that the disease is progressing enough to affect her motor control. Have you considered getting a hospice to come evaluate her? That would at least help you a little bit. I think moneywise medicare would pick up some or most of that, but defer to others. Caregiving is exhausting. Your mom sounds like a handful. Could she go to respite care for a week or month to give you a break?

marshelles

It's amazing that we find it in our hearts to take on the role of caretaker. I moved my mom in 13 months ago. She is a full-time unpaid job. Sorta recognizes people but doesn't know anyone's name but mine. She follows me like my shadow and calls my name 1000 times a day. This lady is into everything not nailed down. Repetitiveness is overwhelming but tolerable compared to the incontinence. The adult pull ups don't work well enough so I'm changing her 6-8 times a day including at least 1-2 showers daily. I get screamed at for insisting she stay clean. My husband and boys will chat with her but the rest is on me. It would be easy to put her in a facility but there is no way staff has time or patience to take care of her like I do. (I have quit my job and not sure how much patience I have left). I have friends who paid $9000 a month out of pocket for care and every time they visited, their mom was soaked in urine, sitting at a table with cold food in front of her. I'd flip out if I saw that. Anyways, we do what we have to do. Like in your original post, I know no one has a crystal ball and all cases are different but is there a guide line on how long each stage lasts? My mom initially started showing symptoms in 2017. Thanks for listening and hang in there!

Emily 123

https://alzconnected.org/discussion/comment/196861#Comment_196861

Hi marshelles,

Sent you a message with a link to the stages... If you want to discuss your journey with the community, to get more feedback and support as a whole, try posting your topic using the yellow 'New Discussion' button at the upper right of the page--that will get more folks seeing your post. 🙂

marshelles

https://alzconnected.org/discussion/comment/196871#Comment_196871

Thank you very much. She has been diagnosed with Alz and she was staged at late 6 several months ago. She's kinda in limbo so I guess that's good. I will check out your link.

BabstheBus

Another thing she does...

Many days she struggles to get dressed and wants to hang out in her jammies. But on shower days, she somehow always manages to quietly wake up and get dressed before I get downstairs. It's her way of avoiding showers. Because I'm not going to make her undress again and I just wait til before bed to shower her. I just think it's funny how they still manage to be sneaky.

The other thing I've noticed...is that often older folks without dementia are aware of their age and eventually come to terms with the aging process and accept that the end is near. My mother is always shocked how old she is. Every day she wonders why she is so sore and achy and every day I remind her she has arthritis and neuropathy and it's not going away, just managed with meds. She doesn't understand why she can't bend like the housekeeper that comes twice a week. I explain it's because the housekeeper is 40 years younger than her and tell her she moved like that in her 40's too. I think it's such a bummer that this disease ruins their comprehension and ability to accept their age and capabilities. I almost think that's part of why this goes on for years. Because a normal brain tells them it's time to go.

M1

I think loss of a sense of time is very common, including how old they are. My partner is about to turn 83, and this shocks her every time we talk about it. But she also has no concept that we have been together for 30 years, or any of our prior history together, our home, and most details about either of our families of origin (including my two kids by a previous marriage, whom she has known since their early childhood).

BabstheBus

https://alzconnected.org/discussion/comment/197193#Comment_197193

Yes, my mom thinks she was only with my dad for a few months and thinks she moved to my house from her childhood home. She thinks everyone she's lost over the years has just died.

I lost my partner at 44 years old to lung cancer. I can't imagine going thru this disease with a partner/spouse. Thinking of you.

M1

There's no easy way to lose a spouse, period. Especially when it has been a very happy marriage. I can't imagine lung cancer was any picnic either. Probably good that we don't have foresight. Courage to take what comes.

SHAWNEE70

> @"mommyandme (m&m)" said:
> Ok, I totally hear you! My mom was a sweet, caring, giving, kind and calm personality her complete life, to all. But as her daughter I knew her and her passive aggressive ways, her judgemental tendencies and narcissism. They were stealthy but they were there. After moving mom here so I could care for her 24/7, it took awhile to differentiate between the affects of the disease and my own mommy issues. Luckily her best characteristics were what she usually projected. Thank goodness for her smiles. Those times when she criticized me cut to my core. “Who would wear their hair like that” (my hair)… “you’re not taking care of my cats”. … blah blah blah. I had to do a lot of emotional work on the fly and also stealthily. Eventually I got thicker skin and more patience and was able to see her through til the end. The CNA license I acquired, before the move, helped immensely. Also, another way I remained somewhat sane was to have help in daily. I had to get away to survive. I would highly recommend getting in more help for your own mental health, if you can. Possibly taking her to an adult day care could provide added stimulation and distraction and give you some more needed time for you. This forum is another reason I coped along.
> Welcome to this place but so very sorry for the pains which brought you here.

It's 2am as i'm typing this. I really needed this tonight as today was especially stressful. My father was diagnosed in 2018 w/ LBD. He's currently 74 and he and my mom live alone and have been together for 57 years. In addition my mom is showing signs of diminished capacity these days, and she too has always kept up the facade of an kind, caring person, but behind closed doors is extremely arrogant and judgmental. Her upbringing was very dysfunctional and because of that, my siblings and I are working on patience. But my Dad is hitting the time where he's more work than she can handle, but she won't accept the help. She wants to remain in complete control, and as with most seniors, doesn't want to acknowledge that in order for them to remain in their home, they'll need more involvement from their church group. The church is not shying away from the privilege to help, but Mom flat out refuses to accept it.
It's exasperating.

mommyandme (m&m)

https://alzconnected.org/discussion/comment/197542#Comment_197542

Welcome to this place but sorry for your need. I wonder if the help you brought in, to start, could be from people she’s not familiar with. For me, I’d rather a professional come into my home to help me clean for instance. I don’t know if I’d want my peers getting into the down and dirty for me. Maybe she wants to keep their situation private from parishioners? Some have brought someone in saying they need hours for their class or they need some extra work for money etc…even if they’re from a service. She might not need to know that. If she thinks she ‘s helping another maybe that might nudge her a little. Of course, finances drive that train. Could your dad go to an adult day care a couple/few times a week to give her a minute to herself? I imagine you and your siblings can relieve her at times? Still the heavy lifting, I understand she needs help.

I was actually awake when the email came over that you responded to my post. 🥱 I’m sorry that you and yours are having to go down this path. Keep coming back here to vent, comment, question and share anything. The people here are wise and supportive, a lifeline for me.