Older parent with signs of dementia

[writergal]

My 70 year old mother's own mother died from Alzheimers in her late 70s, with dementia symptoms starting in her late 60s. Well, lately my mother's been showing signs of dementia; poor reasoning, poor judgement, forgetting names, mood swings with hostile outbursts, refusing to cook or clean, refusing to properly feed herself.

 

Today was just another example of my mother's dementia at work when I took her to a doctor's appointment. On the drive back to her apartment, she told me that she wanted me to drop her off at her apartment and then go pick up her prescriptions. Since her pharmacy is directly en route to her apartment, I suggested just using the pharmacy's drive thru window to pick it up, since I have to work later at a part-time job, which seemed like a reasonable suggestion I thought.

 

Well, all of the sudden, my mother flew into a huge rage about how I have a bad attitude and that I was disowned from the family and that the only way she would take me back was if I wrote her an apology and had it notarized. (Meanwhile, my sister and I have been tag-teaming our mother's care after she went through two recent hospital stays for diverticulosis that's so bad she has to wear 3 drainage bags and have two visits a day from a nurse to change the bags, and a PCA to bathe and feed her etc. )

 

So I argued with my mother (a mistake in hindsight) that she was not being reasonable, and that opened the gateway to years of pent up frustration from both sides about our existing mother-daughter issues. It's not that I don't care about my mother, but I have boundaries that I tried to uphold with her, despite her rant and raves today. After I dropped her off, she told me that I was disowned, out of her will, yada, yada, yada. I said nothing, and drove away.

 

I texted my sister about today's episode because she is a nurse, hoping she'd see that the behavior is possible more dementia. It's hard to know what my sister will think, because I"m the family scapegoat, so my needs or rights aren't considered that important anyway. I'm kind of hoping my sister will see my side of things but I realize that's probably futile.

 

I'm really stressed out with this situation. In my texts, I told my sister that I wasn't going to help out anymore and suggested that our mother use her health insurance to hire a mobility van service.

 

Can anyone relate to my situation at all? Any advice? Suggestions? I don't want this to create tension between my sister and I to the point where my sister takes sides and I'm perceived as the bad egg.

[mercy]

I can so relate to what you are saying. SO RELATE!!

 

My mom is 85. And I am losing her to dementia. She is no longer the person I knew, her whole personality is changing. And she knows it and cries.

 

She knows something is happening to her brain and she asks constantly, what is happening to me. I explain and 5 minutes later she asks the same thing, all day every day.

 

She lives in her own home and my brother is single and offered to move in to care for her with the help of nurses. What a godsend he is. I take her home with me twice a week and through the week I take her out for ice cream and short trips. For some reason h calms her, which I am ever so grateful. We cared for his mom and dad so we've visited this path before. It's not for the faint of heart.

 

We have such wonderful heart to hearts and then she forgets them. I have come to realize that it is important to me that I remember not her. In the beginning it hurt so bad because I wanted what I said to her to be remembered.

 

She has outbursts of anger, it's frustration I know but in the moment it is shocking. Growing up she was the kindest most gentlest woman I ever met.

 

Her medical bills are through the roof and though she/we have the money it is going fast, even with her insurance. Like sand through our hands. Meds, hospital visits, doctors, tests, private nurses, the list goes on and on.

 

Speaking of, I could go on and on but I'll stop. My heart goes out to you. Any time you need to talk I'm here for you. I mean that, ok?

[writergal]

I can so relate to what you are saying. SO RELATE!!

 

My mom is 85. And I am losing her to dementia. She is no longer the person I knew, her whole personality is changing. And she knows it and cries.

 

She knows something is happening to her brain and she asks constantly, what is happening to me. I explain and 5 minutes later she asks the same thing, all day every day.

 

She lives in her own home and my brother is single and offered to move in to care for her with the help of nurses. What a godsend he is. I take her home with me twice a week and through the week I take her out for ice cream and short trips. For some reason h calms her, which I am ever so grateful. We cared for his mom and dad so we've visited this path before. It's not for the faint of heart.

 

We have such wonderful heart to hearts and then she forgets them. I have come to realize that it is important to me that I remember not her. In the beginning it hurt so bad because I wanted what I said to her to be remembered.

 

She has outbursts of anger, it's frustration I know but in the moment it is shocking. Growing up she was the kindest most gentlest woman I ever met.

 

Her medical bills are through the roof and though she/we have the money it is going fast, even with her insurance. Like sand through our hands. Meds, hospital visits, doctors, tests, private nurses, the list goes on and on.

 

Speaking of, I could go on and on but I'll stop. My heart goes out to you. Any time you need to talk I'm here for you. I mean that, ok?

 

Thanks for your post, Mercy. It gave me comfort to know I'm not the only person who is going through this with a parent.

 

I can see it happening and yet my sister and I don't see eye to eye about her condition. Since my sister is a nurse, she doesn't think I'm qualified to recognize signs of dementia, which I think is her way of living in denial about what's happening to our mother.

 

What I worry about is being seen by my two married siblings as the best choice to take care of my mother since I live alone. But I know myself well enough that I'd rather see my mother taken care of in a facility like a nursing home or assisted living, where she can be looked after by professionals around the clock. I am just about to start a 3 month stint of student teaching and cannot sacrifice my time away from my academic commitments right now as I've invested 3 years and a lot of financial aid towards a teacher license and masters. My brother refuses to get involved in our mother's care, so I can see my mother's dementia and other health problems further divide my sister and apart (I don't speak with my brother but I prefer that).

[SunandMoon]

Write that apology get it notarized. Sounds unreasonable to me, but I dunno what transpired between you two. You don't want to be cut out completely and leave things on such thing on bad terms do you? So long as she holds to her word, maybe get it in writing that that is what she said to you so she'll remember and keep her word. Or then again she may not even remember what she said to you.

 

Never been in such a situation, but I think testing the waters would be a good idea to try, tomorrow. Just do it in a very subtle manner, if possible. I'm sorry you are going through all of this, WG, you have my thoughts going out to you.

Edited August 14, 2012 by SunandMoon

[writergal]

Write that apology get it notarized. Sounds unreasonable to me, but I dunno what transpired between you two. You don't want to be cut out completely and leave things on such thing on bad terms do you? So long as she holds to her word, maybe get it in writing that that is what she said to you so she'll remember and keep her word. Or then again she may not even remember what she said to you.

 

Never been in such a situation, but I think testing the waters would be a good idea to try, tomorrow. Just do it in a very subtle manner, maybe through your sister. I'm sorry you are going through all of this, WG, you have my thoughts going out to you.

 

I wish I could have a sense of humor about this whole situation. I think what I need is a quick weekend vacation away somewhere so I can just unwind and forget about all this stress.

 

The thing is, SunandMoon, my mother hasn't been the most supportive person in my life, esp after my accident 12 years ago which put me in the hospital, and as a result I lost my job, lost my apartment, and lost a year of my life during my recovery. As a result, I was forced to move back in with her and she was a tyrant to live with; the emotional abuse was so bad that I thought about ending my life (which goes against my nature since I am an outgoing person who enjoys life for the most part). Same way when my dad was at home dying of cancer; my mother was not capable of giving him emotional support that he needed. Not all of us are lucky to have loving, supportive, normal parents...you know what I mean? And while I don't like seeing her deteriorate like this, I can't handle this all alone and don't want to give up my life and be her emotional scapegoat which sounds terrible, but that's how I feel.

[mercy]

Do not allow anyone to guilt you into doing something that you can't do.

 

Assisted living is the way we are going to have to go because I don't want my brother doing this. It isn't fair to him. He says give it a year. I try to give him a lot of free time but I always feel like it's never enough. But he's so good about it and wants to do it so I have left the issue of assisted living alone for now.

 

I can't imagine how much more difficult it would be if we weren't on the same page with her care.

 

But in the end you have to do what's right for you. You still have to live your life. Please don't let anyone make you feel like you are not doing enough or expecting more out of you than you can give.

 

My brother was in denial until the diagnosis, it was hard for him to accept. But she started getting lost driving and in stores so I took her drivers license away, that was really tough.

 

This isn't going to be an easy road for you. Stand up for yourself. Don't give in to anything you don't want to do.

 

Your life is important, you are starting a knew journey, your own path, don't leave it.

[SunandMoon]

I wish I could have a sense of humor about this whole situation. I think what I need is a quick weekend vacation away somewhere so I can just unwind and forget about all this stress.

 

The thing is, SunandMoon, my mother hasn't been the most supportive person in my life, esp after my accident 12 years ago which put me in the hospital, and as a result I lost my job, lost my apartment, and lost a year of my life during my recovery. As a result, I was forced to move back in with her and she was a tyrant to live with; the emotional abuse was so bad that I thought about ending my life (which goes against my nature since I am an outgoing person who enjoys life for the most part). Same way when my dad was at home dying of cancer; my mother was not capable of giving him emotional support that he needed. Not all of us are lucky to have loving, supportive, normal parents...you know what I mean? And while I don't like seeing her deteriorate like this, I can't handle this all alone and don't want to give up my life and be her emotional scapegoat which sounds terrible, but that's how I feel.

 

I wasn't trying to be humourous or anything.

 

Vacation sounds like a good idea, you have a lot on your plate some time away makes sense.

 

But I see. Helps to know more of it all. If your siblings don't want to consider your situation in their choices, then, yeah; Mercy sounds right on track.

[writergal]

Do not allow anyone to guilt you into doing something that you can't do.

 

Thank you for writing this! I am going to write this down on a scrap of paper and carry it with me. This is one of those life situations that's hard to know when to let go and when to hold on.

 

Assisted living is the way we are going to have to go because I don't want my brother doing this. It isn't fair to him. He says give it a year. I try to give him a lot of free time but I always feel like it's never enough. But he's so good about it and wants to do it so I have left the issue of assisted living alone for now.

 

You are a great sister to your brother. Wish you were mine! I think my mom would be better off in assisted living. When she was recently in the hospital, she was so mean to the nursing staff and her doctor I was embarrassed. She fell and cut her chin open, then the nursing staff put a bed alarm on her, which she would take off (!) and try to move around without it which didn't go over well with her doctor. She stopped once my sister told her to behave.

 

 

I can't imagine how much more difficult it would be if we weren't on the same page with her care.

 

And that's what is already happening. When I texted my sister about how our mother behaved today, she texted back that she didn't want to get involved. This makes me feel manipulated and I told her that, which caused us to argue (of course). She's trying to keep me in my family scapegoat role, whereas I am trying to escape it, esp. now with this situation with our mother.

 

But in the end you have to do what's right for you. You still have to live your life. Please don't let anyone make you feel like you are not doing enough or expecting more out of you than you can give

.

 

Exactly. I have to live my life and do what's right for me. And my sister is trying to make me feel like I'm not doing enough, and expects more from me that I can give because she doesn't want the responsibility and maybe sees me as expendable because that's always been my role in my family, which this situation is exacerbating.

 

My brother was in denial until the diagnosis, it was hard for him to accept. But she started getting lost driving and in stores so I took her drivers license away, that was really tough.

 

Same with my sister. She's in complete denial for her own reason, which I think has to do with the fact that her middle child has autism and that causes her a huge amount of stress. So she may think our mother's dementia is my responsibility to handle since she has a son with autism to take care of.

 

This isn't going to be an easy road for you. Stand up for yourself. Don't give in to anything you don't want to do.

 

No it's not. How do I stand up for myself with my family members? How do I make it through the next three months of student teaching, writing my masters thesis, and working my part-time job without losing my mind, my focus and my joy for life? That's what I need help with.

 

Your life is important, you are starting a knew journey, your own path, don't leave it.

 

Thanks Mercy for your support. I can't tell you how much that lifts me up right now.

[writergal]

I wasn't trying to be humourous or anything.

 

Vacation sounds like a good idea, you have a lot on your plate some time away makes sense.

 

But I see. Helps to know more of it all. If your siblings don't want to consider your situation in their choices, then, yeah; Mercy sounds right on track.

 

Oh, I thought you were. Sorry about that.

 

Yeah. I may try to take a weekend road trip before I have to move, just to get away and recharge my batteries. Yeah, I don't have the most supportive siblings. My sister and I get along well enough but are not that close.

[threebyfate]

My grandfather is on a drug called donepezil hydrochloride (Aricept). It's no cure but has stopped the progression of Alzheimer's and has even improved it a bit. Have your mother see a geriatric psychiatrist, if at all possible.

[january2011]

I don't have direct experience with dementia, but I do have experience of being the scapegoat/black sheep. Looking back, I know that it's partly my fault in striving for independence very early and then keeping my family at a distance because I didn't want to involve them in my life or my life choices. On the one hand, it's taught me to take care of myself but on the other hand, I'm not as close to my family as some people are to theirs.

 

I think in your situation, you can blame it on the dementia but I know it is still heartbreaking to have to deal with your mum treating you in this way. And knowing that you can't really say anything in response or get her to take responsiblity for her actions. If I were you, I would make a decision about which you would regret less when your mom has passed: being there for her no matter what or staying away to protect your own sanity. Whichever one you choose, you're going to have to live with it. And unfortunately, there are no do-overs.

[writergal]

January! Thank you for your post. So glad you can relate to my situation (and sorry to hear it at the same time, that you were forced into the same role within your own family).

 

I already regret returning home the two times I escaped (first time to China, second time to Chicago).

 

I think I've arrived at that point where I need to keep my mother at a distance (despite her early dementia making her confused already) because I need that psychological space now more than ever.

 

But are you still happy despite not being as close to your family? I'm not close to my brother (and plan to keep it that way), and my sister and are close in a good neighbor kind of way; very superficial details are exchanged. We don't hang out socially except when her children are involved.

 

And you're right. My mother will never take responsibility for her actions; she never did before the dementia symptoms started happening. Everything has always been my fault. I'm surprised she didn't try to blame my father's cancer on me. She did blame me for getting hit by a truck 12 years ago and when she would come to visit me in the hospital, would criticize me about how I'm wasting my life recovering in a hospital. And then I had to move in with her for a year during my recovery. Worst year of my life. But I digress.

 

If I had to decide right now what I'll regret less; being there for my mother. I had to edit that as I regret more that I wasn't more independent. I have already tried to be there for her, even now with her medical issues. I regret more that I didn't stay away from my family when I had two chances to build my own life away from them. I've done everything I can for my mother and she still treats me like garbage.

 

I don't have direct experience with dementia, but I do have experience of being the scapegoat/black sheep. Looking back, I know that it's partly my fault in striving for independence very early and then keeping my family at a distance because I didn't want to involve them in my life or my life choices. On the one hand, it's taught me to take care of myself but on the other hand, I'm not as close to my family as some people are to theirs.

 

I think in your situation, you can blame it on the dementia but I know it is still heartbreaking to have to deal with your mum treating you in this way. And knowing that you can't really say anything in response or get her to take responsiblity for her actions. If I were you, I would make a decision about which you would regret less when your mom has passed: being there for her no matter what or staying away to protect your own sanity. Whichever one you choose, you're going to have to live with it. And unfortunately, there are no do-overs.

Edited August 14, 2012 by writergal

[january2011]

In general, yes, I'm still happy. I try to hold onto the moments of happiness and let go of the rest. I may never be close to my family again. Or something might happen tomorrow and it brings us all closer together.

 

I think that you have to find your own source of happiness. If you can't get it from your family, then you need to find other ways to be happy. And if you decide to do your filial duty, perhaps some meditation and venting before and after might help.

[mercy]

 

 

No it's not. How do I stand up for myself with my family members? How do I make it through the next three months of student teaching, writing my masters thesis, and working my part-time job without losing my mind, my focus and my joy for life? That's what I need help with.

 

 

My oldest sister helps her children with their children so they can work and be free of childcare costs. That is her path. When mom started needing someone with her 24/7 she explained to the other siblings that what she could do was one night on the week-ends. We were fine with that because of her commitment to helping raise her grandchildren.

 

My other sister owns her own business and works an unbelievable amount of hours. For her there are never enough hours in the day. She's single and supports herself. That's her path. She comes to help when she can and when she can't there is no guilt.

 

My brother is retired and wants to do it. My h and I took early retirement 10 years ago. So our hours are our own. The summers are spent with entertaining two grandchildren and caring for mom. Which is our path.

 

Are their three of you? You need to explain your boundaries to your sister and brother. This is what I can and cannot do. How they react to that is up to them. You put into helping what you are comfortable with due to your obligations to support yourself and sustain your lively hood. You're unhappy frustrated and feeling judged. Stop it. We all have a personal path to follow in this life. Stay true to your authentic self, number 1 and you will be at peace with whatever choices you make.

 

No one can make us feel anything. Don't allow others to define who and what you are.

[carhill]

Can anyone relate to my situation at all? Any advice? Suggestions? I don't want this to create tension between my sister and I to the point where my sister takes sides and I'm perceived as the bad egg.

 

A couple of suggestions:

 

Agree and redirect.

 

Get a professional diagnosis.

 

Make arrangements now for future care and estate planning.

 

 

IME, dementia/AD is a process of elimination. Once other potentials are eliminated, a specific disease or disease group is what remains. My mom's doctor's weren't completely sure until they autopsied her brain after death. The results confirmed their diagnosis group and prior test results. It could just as easily have gone the other way. A lot is still unknown.

 

If you end up as primary, be sure to monitor your own mental health and don't be afraid to seek out professional help and/or medication to assist you. Good luck.

[amaysngrace]

I can't really relate to what you're going through writer, but I hope you tap the strength you have inside you to deal with it all.

 

Thinking of you. XO

[writergal]

When I hung out with my niece today, she reported to me that her visit with her grandma yesterday left her with questions, and feeling uncomfortable. When I asked her what happened, my niece told me that during her visit, my mother talked about dying and what heaven will be like, then transitioned to stories about her own mother's childhood. My niece referred to my mother as "cray-cray."

 

Carhill, my mother is ignoring me right now, so I can't really convince her to get evaluated. When I mentioned your suggestion to my sister she rolled her eyes and responded with silence.

 

Any future arrangements for my mother's estate will most likely be done by my sister and brother, thanks to good ol triangulation in my family (with my position being the outsider aka scapegoat). Believe me, I've tried to de-triangulate my dysfunctional family (to no avail) through negotiating, being more self aware and recognizing my role...but even our family therapist failed when my mother refused to stop attending family therapy sessions shortly after my father died, when the family therapist confronted her about being an emotional tyrant, domineering, manipulative and mean. She refused to attend any future family therapy sessions after that. But at least someone outside the family forced her to see how destructive her behavior has been on my family system.

 

Now that she's having periods of dementia which my niece has noticed, the problem is exposed and will have to be dealt with. But as of right now, I am powerless in my own family system, to have any say as to how to proceed in getting my mother properly diagnosed, then put in the best facility. She has a year left on her apartment lease and I could use that year to try to convince my sister to listen to reason, especially since it could be a year of my mother's condition growing worse.

 

And no, I won't end up as the primary caretaker or decision maker. My mother will see to that, by appointing my sister as the executor to her will and property etc. What really makes me angry is that my mother took my father's life insurance money for herself, only doling out small amounts to my siblings and I when she deemed necessary. No inheritance was ever given and I never pursued legal action to get it, when I really could have. So, for the past twenty years, my mother's been living off his life insurance as well as investments, her pension, etc. and living a pretty good lifestyle at that; new car, 2 bedroom apartment, trips to visit family and friends. This is the same woman who told me if I went to China to teach English for a year, she would disown me. She even stood in between me and the gate entry and intercepted any mail that I sent home addressed to my sister who lived with her at the time, opening my mail and reading it (accord. to my sister). So, not a very supportive parent, to say the least.

 

I've started reading article about family triangulation and about siblings in denial (my sister and brother) about parent's declining health. I don't know what good it will do me as I'm the outsider (and will likely remain in that role). At this point, all I can do is focus on getting my life in order and let my two siblings deal with our mother's declining health problems. I refuse to let my mother's tyrannical behavior (influenced or not by her episodes of dementia) derail my 3 months of student teaching commitment and beyond that. If either my sister or brother want to get in touch with me, they know how to reach me. Nothing I say or do matters in my family anyway.

Edited August 16, 2012 by writergal

[amaysngrace]

You sound as if you're accepting the situation gracefully, writer.

 

Some things are worth fighting for and some are not. It sounds like you're choosing your battles wisely.

 

I'm glad to hear you are putting yourself and what you need first. It seems like your family does that so it doesn't make it bad if you do too.

 

Take good care of yourself and keep being strong. XO