New here, trying to figure out odd family dynamic

[OddFamily]

Hello there.
I've been lurking on this site for some time and it's been quite helpful.  As I read through people's posts I began to realize 'wait a minute, some of it sounds like my grandma'.  I didn't put it together for some time.
I almost feel like I shouldn't be here as she hasn't been nearly to the same level as some of the people that others on this site have encountered.  The issues I see with her are a few fold.
First she makes no move to adapt to modern life unless she has no choice (ex: wanting products that haven't been made in years and expecting us to search all over for them, ordering dishes that haven't been on a menu in years or are out of season and refusing to try anything else).  I understand being resistant to change as people get older, but even if something is better than what she uses, no won't do it until she has no other choice.
Second, every time there's something she needs to do she has an excuse.  PT tells her to exercise:  can't figure out the gym equipment, doesn't want to wear a bathing suit, too cold to walk.  If a healthcare professional tells her to do something and she doesn't want to do it she won't until it's an inconvenience or until the issue is forced and she has to face the consequences.  Won't use a walker because of how it makes her look, never mind she's a major fall risk.  The same thing with her panic button, won't wear it in her pocket because she doesn't want to set it off, won't wear it around her neck because it's too heavy (it's not).  Every time I have to go out with her it's a huge logistics problem and I'm scared that if she starts to fall she will either take me with her or I won't be able to keep her upright.   
My parents tolerate this behavior as 'that's just the way she is' and my mom in particular rearranges her life to take care of her.  I understand that caregiving is a major job, but when she's making things harder for herself and by extension everyone else and I am starting to grind my teeth at once weekly visits, then something is not right.  I'm not only grappling with coming Out of the FOG myself, but how do I deal with family still in the fog and remain on as good relations as I can? 

[treesgrowslowly]

Hello and welcome,

I can really appreciate the things you wrote here.

It is very hard to take care of someone who won't help in their own care. We accept this from very young children - they don't want to wear a jacket when it is cold outside, for example. But when it is someone much older, it is harder on us. Each one of us needs to help in our own self care. She sounds like she can be resistant, perhaps even defiant with the idea of using the walker and the panic button?

The emotions people have, can be transferred onto us. Instead of addressing whatever issues she has with using the walker and the panic button, she refuses to use them, and then you end up feeling anxious because the risk of a fall or accident is there. It is a form of trying to shift responsibility onto someone else. It can happen for all sorts of reasons.

Your parents have found ways to tolerate this. If I were you, I would not be able to deal with trying to keep someone from falling during an entire outing with them, if the walker is what is prescribed for this very thing. It is like a diabetic refusing to bring insulin with them, or a near sighted person refusing to wear glasses when they drive a car. There are limits and if you decide that this is too much to bear, then you do have the right to say, I want to go with you to this event, but I cannot go unless you are able to use the walker and wear the panic button". You do have the right, as an adult, to state what you need and trust that your request is not outlandish or out of bounds.

Having extremely stubborn personalities in my family as well, I would say that this would go over "like a lead balloon" if I said it to some of my stubborn relatives. So then it would become, ok well when I visit you I will sit with you, but I won't go to the coffee shop because I need you to use the walker if we went there.

It does disrupt the status quo, if the status quo is to keep quiet about it and hope for the best. Only you can know what you think will feel good for you to voice your own boundaries and expectations around this issue of her using the walker and panic button.

People here at this site know well the other piece of this as well - that your desire to keep her safe from a fall, is not going to be recognized by her for what it is - concern. That is something we deal with as we come Out of the FOG. You cannot make family members walk Out of the FOG with you. You will see in the forums that we all work hard to get ourselves to live Out of the FOG and we have to live by example, and hope that other family members also want to do the work themselves. Some of them won't want to learn about PDs, learn about JADEing and other teachings in the toolbox here, and that's ok. You are already seeing that there is some relief to be had in being Out of the FOG  in your own life.

I am glad you are here. You care about your grandmother, and it shows in your post. It sounds like you want to have a relationship with her, with less anxiety and worry that her health is at risk because of her choices with the walker and panic button. Others here may have ideas too about how you are feeling and how to use the toolbox here with your relationship with her.

Families are collections of people with their own personality traits and their own relationship dynamics. My guess is that some people in the family will be ok with her not wearing the panic button, but I am more like you. I would want someone I care about to use the walker and panic button. I would also expect someone 2 generations older than me, to overcome the child-like resistance they have with these things.

I know aging is hard but when we don't take care of ourselves, we end up expecting others to do it for us and then they get worn down (like  you are somewhat feeling) and it's not good for our relationships, to make others take better care of us than we take care of ourselves. In families, these dynamics of resentment and anxiety can become normal, and after a while a lot of family members just get used to them, but a few of us seem to wake up to it, and realize we are in a fog when we want to live Out of the FOG.

[OddFamily]

Thank you. 
You are correct, her objections to using the walker and panic button do boil down to 'I don't want to, therefore I won't'.  Maybe I disagree with this sentiment so strongly as I do some engineering at work and the unwritten rule is 'never play fast and loose with safety'.  It is a safety issue in her case.  I know neither of my parents approves of her doing this, but they've chosen not to force the issue for reasons unknown to me. 
The status quo seems to be keep quiet and hope for the best, astute observation. 
You hit the nail right on the head with your observations, thank you again.

[theonetoblame]

Hi OddFamily,

Has your grandmother been like this most of her life or are these behaviors something that has emerged later in life?

I ask because as people age there is a theory "last in - first out" i.e. that the skills we develop later in childhood and early adult life are the first skills we lose as we undergo the early stages of dementia. As people age cognitively they often don't remember new information as well. Subsequently, they can also sometimes seem to live in the past. The examples you provided about her wanting only old menu items, insisting on personal items that are no longer available etc. sound familiar to me.

As i understand it, personality disorders are diagnosed based on early onset (childhood for some, early adulthood for others) and a persistent pattern of behavior across the adult lifespan (although some think PD may 'burn out' a bit as some folks get older). If the behaviors were not present in her middle adult life the cause may have a different origin, one that may necessitate a referral to a Gerontologist.

[OddFamily]

In answer to your question, I didn't notice previously because a child doesn't know any better but a older young adult does.  Also I see more of her now, growing up she lived in a different state and I only saw her every few months.  Certain parts were there previously but more muted, my grandfather seemed to be able to keep a lid on it for lack of a better word.  But once the Alzheimer's claimed him, all bets were off.  Even though my grandfather passed several years ago, they've only gotten worse as she's gotten older.  That's why I'm not sure it's all related to aging.

I forgot to mention anxiety is a significant component, as in she gets herself so wound up that she's at risk of having a 2nd stroke and I can prove it.  There's been not many but a few comments (not knowing when to back off about 'getting married and giving her grandchildren', remarks about me needing shapewear when I was still very young) but those have been limited, she seems to have given up on making me a carbon copy of her.  I'm living on my own outside of my parent's house, I'm not looking to 'marry and settle down', and I work outside the home not in a traditional women's job.  The other issues are refusing to adapt to the modern world and expecting us to bow to her whims and being medically noncompliant in such a manner as to risk severe injury because she doesn't want to.  Walker or broken bones?  Easy choice for me, but no she's willing to risk significant orthopedic injury due to 'wanting to not look old'.  People passing by don't notice as much as we think they do, and she lives in a senior community, everyone there is over a certain age and many of her neighbors use some sort of mobility assist.  No amount of my mom's efforts have budged her on this.         

I get it, change is hard.  But there's a difference between change is hard but I will try anyways and keep an open mind, and change is hard I'm going to stick to what I know, refuse to budge, complain for certain (new way's too or not enough something) and everyone must bow to my desires and they're awful if they don't.  I'm the first, she's the second. 

[theonetoblame]

I here your frustration...

If there was a persistent pattern you're probably facing a 'concurrent' complication of cognitive impairment. As you mention, she already had a stroke -- strokes can happen in many different areas of the brain and subsequent changes to thinking and personality can be dramatic. For example, a stroke involving the frontal lobes of the brain can impair Executive Function i.e. judgement, decision making, impulse control. A stroke involving the medial temporal lobes can impair memory to the point where forming new memories can be very difficult. A stroke in the parietal lobe can create visual and/or spatial neglect (not perceiving part of the world around you or not perceiving part of your body as yours anymore). If there is a third overlay of early dementia then your grandmothers neurological status will be even more complex, likely with more diffuse cognitive impairment across multiple domains. Frontotemporal dementia in particular would lead to very troubling changes to executive function and personality.

[OddFamily]

I'm not sure first stroke was responsible for this because the anxiety was going on before she had the stroke.  The set in ways and not nice comments were there before, but the noncompliance came afterwards.  She was insisting that she didn't have a stroke, didn't want to go to rehab, kept bucking the system and risking falls while she was in rehab, etc.  It was in the hindbrain, severely shot her balance as a result, there's some residual weakness on one side.