survivor's guilt

Chrysalis2

Hello all.  I am new to this site. Have posted in "musings" which helped me frame this question for "caregivers forum."  My mum is 82 and is living in AL. She was diagnosed several years ago with MCI, then some time later with ALZ. My father, 84, was her primary caretaker for far too long for his health. Now he is living  alone in the house they built and raised my sisters and me in. He has recently had a recurrence of cancer. He is still working a bit. So here it is  New Year's Eve, and my husband and I have just returned home from a movie and dinner.  I have a headache, born I'm pretty sure of unspent tears. Every time I relax my body I feel the tears well up. I am in a deep conflict between wanting to be with my mum and dad, with my family, somehow making it all better, and trying to enjoy my husband and our friends and the blessings we have. Both my husband and I live with mental illness and have only been married for five years. I never thought I would be this blessed to have a husband, a home, neighbors, friends, extended family and most of all love given and received. However, I am not quite sure who I am most"wed" to.  I feel sooo guilty that my parents gave me so much, put so much effort into my care and health, and never let me disappear into "the system," and now here they are--my mother angry, rageful and paranoid and anxious and sad, with no understanding as to why she is not home,  and my father --ill and still getting the worst of it from mum, and wrestling with the impossibility of making my mother better.  I too, seem to wrestle with the same. All the while my father is telling me  to take care of myself and my sisters also encourage this; even my husband says "when you take care of yourself, it is a gift to me." Cue the tears.   No one wants to worry about me as they did twenty, thirty years ago.  I am so much better, but this ALZ and AL and so forth has me wavering on the line between a good healthy self care mindset and a dive into doing more than I can, then getting symptomatic and then having to hide it from my family. As a good  friend and practitioner told me "You can't caretake your way out of this and you can't get sick and be 'excused' from it." I'm getting off track. How do other adult children or adult children with chronic illness or disability cope with ADLO?  Do others experience this sort of guilt? How do we let go enough to not self-destruct but also stay connected and helpful and engaged to family and to the ADLO? Hoping someone might connect with this. Thanks for reading.

Klako

While I do not live with mental illness myself…I do feel the guilt of placing my dad in AL and getting some of my life back. I just placed dad this past Tuesday and I beat myself up for not being there everyday for not longer than a few hours and transferring my sadness to him. I know this is what is best for him and he is in a good place. I know that as his only caregiver I cannot provide for him 23/7. However, the guilt of going around and living life I have not lived  for a while and knowing he is sitting by himself watching TV is very hard…

harshedbuzz

Hello and welcome. I am sorry for your reason to be here, but glad you found this place.

A couple of thoughts- are you using AL as a euphemism for Memory Care? If you aren't, it could be that your mom needs a higher level of care than she is getting. An actual MCF should have well trained staff at higher ratios delivering dementia-informed care which could help your mom be engaged and busy. Many MCFs have on-staff or affiliated geriatric psychiatrists who could manage medications to dial back the powerful feelings and confusion she no longer has bandwidth to process which would improve her quality of life. If there isn't someone on staff, this is still worth seeking out as an outpatient. 

As for guilt. You are not the one who is the cause of their misery-- dementia, cancer and old age are at fault here. You didn't do this to them, you cannot spare them the consequences of age, illness and infirmity. You can make sure mom is in an appropriate setting. You can make sure her mental health issues are addressed. You can visit with treats.

And you can live your best life as tribute to their work in raising you because doing less would make everything they have done for you a waste of their time and resources. I say this as a parent. I have a son with high functioning autism and some related mental health issues. Parenting him was a constant battle to get him the help to build the skills he'd need to have his best life-- it was isolating, expensive and exhausting-- but he's a terrific individual and was worth the effort. His payback-- and yours-- is living the life your parents dreamt for you when things felt like they may never get better. 

HB

Chrysalis2

HB, thanks for the straight talk. Mum is is in an AL floor of a care facility that has a MC unit that she will progress to. Perhaps she is closer to that rubicon than family and staff are thinking. My sibs and dad are just starting to take mum out on outings... it is as if we are rowing against the current...I take your emphatic "reality test" to heart. It carries weight coming from someone who is not a sib and who is not a treater; especially with your perspective as a parent. As I write this I think of some of the darkest moments twenty, thirty years ago and I understand the joy my parents have that I am living that best life. It is a bit of a leap, a leap of willingness, to say "ok, I will move forward, I will continue to thrive, even as my parents suffer."  I dig deep for the faith in knowing, really knowing, that this is what they want and acting on it. Knowing that this is the progression of life, not just my own personal struggle. Thank again for the touch stone.

Chrysalis2

ChicagoGal

Dear Chrysalis - I do not struggle with mental illness but as the oldest child and daughter I was raised with tremendous expectations from my parents that I will take care of them and make sure they stay in their home until they die,  Dad did die at home two years ago from complications of a stroke.  Since then I have been managing mom's house, finances, groceries, medical appointments and care givers.  The last few months I have also been sleeping at her house because of her evening/night time behavior (staying up all night, escaping from the house, anger, physically lashing out at caregiver...).  This past Friday I moved mom to a Memory Care facility.  They have activities all day and caregivers that know how to deal with dementia.  Mom will have a routine, tasty/healthy meals on a schedule, things to do and company - all day, everyday.  I plan to visit mom a couple of times a week, be her loving daughter and spend "happy" time with her.  If she stayed in her home she would for sure hurt herself or someone else.  Your parents took care of you so that you would have a healthy and fullfilling life - living with this type of guilt will make you sick and unhappy.  That is not what they would want for you.

Chrysalis2

Dear Chicago Gal,

Wow! Your post could have been written by my eldest sister or anyone in our family. The eldest lives closest to my parents, to my mother's AL and has the lion's share plus of the responsibility for both my parents. My farther never had any plan other than to live at home until he was "carried out in a pine box." He has been so flummoxed by my mother's ALZ that he just bore down and took care of her until he was almost dying. Finally, guided by  my sister who talked her way to it with the rest us, my father moved her into AL. The situation had become a kind of elder abuse by elder spouse (my mother would throw things, yell, etc)  We were all excited for the chance, once mum was in care, to enjoy loving visits with her. Unfortunately, this has only taken place in part. She still, each time my father visits, just goes after him. Sometimes my sisters as well. Sometime's not. So far, I've been fairly lucky on that score. The head nurse is telling dad this is normal, to be expected.  For cripes sake!! I think the AL does not have enough structure and enough psych. help. Mum cannot follow the Bingo and Trivia games they do have. She is very social yet is spending many hours in her "apartment" watching movies on her ipad. She cannot work her laptop, cannot email her friends; she thinks its broken, or that you can't type a letter anymore....BUT, I do not have enough sway in the family or enough of my own mental resilience to initiate and create a change (get her a geri psychiatrist, take a look at the MC upstairs). My sister and dad have HIPPA clearance and POA--this is just above my capability or my mental energy.  So, here we are. Your description of your mother's MC sounds really promising. Please keep in touch as your mother makes the social and emotional transition to her new environment. And thanks for the support in regards to taking good care of myself. 

Many thanks,

Chrysalis 2

Arrowhead

First, DO NOT FEEL GUILTY. You have more to deal with than anyone should have to, and you do the best that you can. You are not superhuman so don't feel bad about how you respond.

Second, sometimes one of the best things you can do for yourself is to let it all out and have a good cry. Some say that a man is not supposed to cry, but sometimes this one does. Crying can be very therapeutic. The next time you feel the need to, don't fight it but let it all out. The emotional release will do you good.

harshedbuzz

Chrysalis2 wrote:

Dear Chicago Gal,

 Unfortunately, this has only taken place in part. She still, each time my father visits, just goes after him. Sometimes my sisters as well. Sometime's not. So far, I've been fairly lucky on that score. The head nurse is telling dad this is normal, to be expected.  For cripes sake!! I think the AL does not have enough structure and enough psych. help. Mum cannot follow the Bingo and Trivia games they do have. She is very social yet is spending many hours in her "apartment" watching movies on her ipad. She cannot work her laptop, cannot email her friends; she thinks its broken, or that you can't type a letter anymore....BUT, I do not have enough sway in the family or enough of my own mental resilience to initiate and create a change (get her a geri psychiatrist, take a look at the MC upstairs). 

Chrysalis 2

You're very intuitive. This AL is a poor fit for your mom. She needs a higher level of structure and social activities that are dementia-friendly and failure-free so she can feel successful.

We had this in my mom's family. My least favorite aunt was placed in an AL facility by her daughter. A rookie mistake- care needs to be aligned with a resident's needs at their worst, not on a good day. They didn't have much money to spend so they chose the less expensive option. My cousin communicates with ASL which lacks some subtlety when describing frequency and intensity of behavioral symptoms. And I think my cousin didn't realize how much scaffolding she was providing to her mom at home. Aunt was beyond that level of care; she needed more assistance with hygiene and getting to meals, she couldn't follow games and was accused of cheating, and she was ignored or bullied by the other ladies who quickly realized she had had a cognitive shift which led to her acting out more often.

My favorite auntie was in midstages when she went to a MCF. She maintained her lovely manners and sweet disposition throughout the course of her disease. Because of her personality the facility included her in many of the AL activities and outings while her care was done on the MC floor. Years later when she moved to a SNF bed, she had her meals and activities in the MC unit.

HB

Chrysalis2

Hello again HB,

Thanks so much for your response. Environment aligned for worst day vs best day is a really astute measure to use. My mother is very social still but is losing her filter; she says awful things about the other less mobile residents. Some other residents celebrate her; one told me that "your mother should be the director of entertainment!!" Very sweet and a nice moment, but once she is alone with my father or one of us sibs she lets loose. Saying this because I don't know what stage she is in. I was encouraged to read that your beloved aunt went to MC when she was in middle stages.  I would love to get a tour or at least a description of this MC floor. It is locked, which might put my mother "over the edge." Still, I think we need to do something to turn my mother's vitriol towards the professionals and away from my father. We are all so cautious as to not do anything to set her off. My own psychiatrist does a fair amount of geri work and  he explained that a fit may be because of a sore toe, or a change in her environment, or one of hundreds of stimuli that have nothing remotely to do with anything any of us say, do, or don't do. My mum has always been very conscious about how she appears, how she performs, and her independence and her pride have gotten her through a lot in her life. These traits have now become roadblocks to her care. Family is still kowtowing to them. I think we have to get her into the right floor, as you said, for her worst day.  It is time to treat her illness at the expense of her pride. And I should add my father's deep grief and sense of failure--he truly believed he could fix anything. 

Being able to discuss this here is so helpful for me. Even if I am unable to cause substantive change for my mother, I can start to feel myself really absorbing from everyone's responses that the vast majority of my mother's experience and behavior is illness driven and can't possibly be my fault. I think I will reread the stages of ALZ tomorrow and see if I can poke my eldest sister to at least describe the MC unit to me.  Perhaps the facility has a pamphlet or folder about the MC.  I'd be interested to know from others what has been your experience of MC units for LO's. 

Many thanks,

Chrysalis2