She Should Know Better

Josie in Podunk

We are visiting my spouse’s sister in Florida for Thanksgiving week that has mostly gone well since I limit how much time he has to spend with her on any given day.

However, several times she has tried to bully or yell at him when he has not responded in a manner she liked or moved as fast as she wanted.  I have had to rather tell her  more than once she does NOT get to do that because everything he does, say, doesn’t do or doesn’t say is dementia related. First time I was nice.  Second time a little less so.  Third and fourth times…not so much.  Fifth time I managed to keep myself from shouting at HER, but did rather harshly remind her I was not going to allow her to keep doing it.  (I was seriously ready to go back to our cottage and not return.)

She should know better.  For over 40 years she was a registered RN.  Their father and their mother both had dementia…his caused by a rare reaction to a kidney infection and hers due to a bad fall and severe concussion.  Sis was a part-time care giver for their dad and full-time caregiver for their mother.  She knows how this works.

I should not have to tell her that her own behavior is off base, unwarranted, and unappreciated. HOWEVER…as my sweetie’s caregiver and advocate…I will…as many times as required until she gets it…or not.

I don’t want to be a Tiger Mom, so to speak, but her attitude towards him really ticks me off.

Thanks for letting me vent.

Stuck in the middle

Sounds like Sis may be losing it a little herself.  Hang in there!

extex

Lost,

Maybe if you just got him up and went back to your cottage when she starts in she would get the message before long.  This disease sucks and makes family gatherings intolerable sometimes.

The thing that ticks me off more than anything is when someone Bonnie hasn’t seen in months, maybe years, walks into the house and begins asking “do you remember “.   I have thought about making a sign for the door about that subject.  They know that she has no memory but are not polite enough to avoid the subject.

With  both her parents having memory problems I wonder if your SIL  has given any thought to her own possibilities?

Buggsroo

Lost,

It sounds like your sister in law has her own issues surrounding dementia. I am not excusing her behaviour but she is probably terrified of developing it herself. Having been a caregiver to both parents, she probably has many unaddressed issues surrounding the disease. 

It is great you have your husband’s back, she sounds like she is a bit of a bully. Good for you. 

Maybe less contact with her could be the way forward.

Josie in Podunk

Thank you for your replies.

Y’all have hit on something that has also occurred to me over the last several days of being with her….her own memory issues.  In the last 5 years, she has been treated for non-hodgkins lymphoma (successfully) and twice for lung cancer that required removal of half of one lung and 2 separate rounds of radiation…the last round just 11 months ago…that is currently considered in remission rather than cured. 

She may be suffering from cancer treatment related memory issues, as well as challenges from not taking her type 2 diabetes seriously. I believe I am going to give her some grace wondering if, mayhap, she really cannot, at this time, do any better.

And, honestly, I am concerned for her down the road.  She never married, has no children, and my sweetie is her only sibling.  His kids are certainly not going to step up, I cannot expected her nieces (her mom’s sister’s kids) to do so, and I simply cannot caregive both of them.

I have no idea what she has done or not considering her future needs.  I reckon that will be a conversation needing to be had when she comes to Casa de Chaos here in Podunk for Christmas.

It boggles that both parents and both kids developed cognitive issues for completely different reasons. 

Ed1937

Stuck in the middle wrote:

Sounds like Sis may be losing it a little herself.  Hang in there!

That was my first thought too.

Jo C.

Off comes my Peer Voluteer hat so I may speak as a plain Member.

Wow!  Treated for non-Hodgkins Lymphoma, treated twice for lung cancer, partial lung removal; multiple toxic chemotherapies; multiple radiation therapies with ongoing cancer treatment and oversight; caregiver for father and mother until their deaths, and most of us know how uber-difficult that is with long term effects, and diabetes; no children and no backup - basically, she is alone in all of this dreadful situation.  Suddenly, she has guests on a holiday. Holidays can be stressful with all that is expected and also when having losses and nothing is the same as it used to be much less when health is gravely affected.   You were at her house visiting her and having Thanksgiving and there was the meal and all to prep . . . . it did not go as expected.

I am going to take the opposite side of this in a way. Always good to be an advocate  and you were away from your home and had your own level of stress.  But . . .  "She should know better," is rather harsh as an expectation under the circumstances and to hold onto that.  Your SIL may or may not have memory issues secondary to the severity of what she has been suffering and she has been through with gosh-awful treatment; so, so, so much and she will continue to have physical fallout from that.  She is a human with feelings and all that entails no matter what her care history for her parents and that she is an RN.  Her situation and physical issues are definitely not "over."  She may well be under dreadful stress, not feeling well, overwhelmed  and having guests in the house of top of everything, and may well have been on overload and had a mini meltdown from said stress and all else that could have been happening.   You told her how you felt; you were a good advocate for your husband.   When realizing your SIL was under such stress and was having a hard time of it knowing her health issue history; perhaps would have been best to have taken self and husband out of the immediate area SIL was in and have given her plenty of space without added sparks.  And perhaps lovingly and kindly asking her if there was anything you could do to be helpful. 

 In such a set of circumstances, you did have your own stressful feelings and it was not a good mix.  But; please give your SIL the benefit of the doubt and let go of the "should."  If this were you with the same terrible health history and horrible treatment effects, you would want gentler understanding for yourself as said, "under the circumstances," and would want others let go of the "shoulds." 

 It is over.  SIL needs much, much understanding and support; she is not cured and both of those  conditions are still severely affecting her and her future is probably not rosy.  Your husband also has his needs and he too needs understanding.  Keeping things simple as can be would probably serve best.

 May you be able to let this particular incident go and have a kind relationship with your SIL considering her circumstances and the difficult future she is facing.   The same dynamics are in place for Christmas, so as said, having things simpler and expectations not too high would be helpful for a successful holiday for everyone which may possibly be the last holiday that all are able to be together.

 Best wishes for a peaceful holiday and good relationships and that all goes well,

 J.

  J.

Paris20

I think that most people don’t know better. When friends and family hear certain words or observe certain behaviors, even if they have intellectual understanding of dementia, they often react as if they were dealing with a «normal» person under everyday circumstances, with certain expectations of how people behave. We know that isn’t true so we have adjusted. We try to react differently than we used to. Others may not have been faced with these particular challenges.

Many of us who deal with dementia 24/7 have learned more than anyone else can possibly learn. I’m not trying to paint us caregivers as omniscient geniuses. We’ve learned the hard way to expect the unexpected and we’ve developed strategies over time to manage, often through trial and error. I’ve become frustrated at times that even those closest to me just don’t get it. On the other hand, how could they? 

Rescue mom

I was thinking kind of what Paris said, especially since I took DH to a small family gathering, and some of the same things happened. People/family you think “would know better,” who’ve dealt with DH for years (maybe an hour at most), responded in ways that were just wrong, and not nice, for an Alzheimer’s patient.

 It was always a quick thing, and their response would have been totally normal for a normal person. But they are not used to dealing with an Alzheimer’s person, like caregivers do.  They know he has Alzheimer’s, they know what’s appropriate, and they usually do/say the right thing.

 But in the flash of a moment, and in a crowd, and a rush, they forget that. They respond more naturally, probably OK with friends but not a PWD. Some of them have their own issues to deal with (thanks Jo).

No, they don’t get it, even though I think they should. Is it expecting too much for them to know how to act better around their own father? Apparently so.  Maybe they just don’t want to see it (the disease). To me, it’s like how nobody knows about caregiving except other caregivers. 

It all mostly went over DHs head. He did better than I expected, although we were there barely an hour, and left ASAP when he seemed “tired.” He said he wanted to attend, and said yes when asked by others late if he enjoyed it. (He says yes to almost everything).  

Maybe it’s more proof that I should be more careful or guarded about who’s around, and circumstances. But honestly, strangers who know he has Alzheimer’s respond/help better than some family, in this particular situation.

Josie in Podunk

Y’all have really given me a lot to think about and I appreciate each reply.

My sister in law placed a lot of stress on herself for this visit.  She has been lonely since their mother passed 6 years ago with no family around.  She wanted to show us a good time even so we have been visiting for 15 years and do know our way around…she was trying to be a good host.  Yet, she was also finding things that suited her rather than my hubby and I had to cajole him into cheerfully agreeing.  She additionally wanted to organize something for each of the 8 days we were here….my sweetie can’t take that…it is too much too much.  He needed down days and I am not sure she quite understood that and I tried very hard to be gentle in telling her he needed rest days and invited her to dinner with us on those days instead.

On top of all of this was Thanksgiving Dinner.  She wanted to recreate what she saw as the perfect dinner from her childhood…don’t we all…so she was frustrated when certain items could not be found and we had to substitute when she and I went shopping.  There is also a cultural difference in our raising…some of her New Jersey items…like creamed pearl onions and chestnut stuffing in the bird were never part of my combo California and Southern family’s menu.  Therefore, I did not know how to cook them. In order to help her, she needed to teach me, which was another added stress.

I am afraid, for her, her brother’s dawdling getting to the table on her timeline was the final straw in an already challenging in the kitchen day.  His pretable routine did not match what she had in her mind that when her grandmother said “come to the table” one came to the table…now.  He needs time to get his train of thought from one activity to another.  At home, I give him periodic clues about dinner’s timing.  She did not have that to give him as things were a mite chaotic coming together even with my help.  

So, he was not ready when she was ready.  Her natural tendency towards being bossy and critical did not work in her favor.  His current state did not help.  Add my own stress…and, Bob’s yer Uncle.

In the end, the meal and the day turned out ok…and, bless him, he was totally unaware of the chaos flowing around him. The rest of the week was better once the stress of Thanksgiving itself was past.  And, I did remind myself…often…that they both had needs to be considered as we finished out our stay.  

I would be lying if I said I was not tired from juggling these two disparate personalities.  And, while I can still be a mite aggravated and wish she would have shown a bit more consideration of his state of mind….I have to agree with some of y’all that she just may not be able to see and do that right now given her own life challenges.  Thanks so much for your input.