How do you handle when the suggestion is always that you, the caregiver, need to do more!?

DoingMyBest73: Your story sounds so similar to mine. Out of absolute necessity, I lived out of state with my late mother to provide care for her as she was adamant about staying in her own home. My cousin and his wife wanted to visit and did and even though they were supposed to visit my mother from out of state YEARS earlier, they did not. I had explained to them that my mother's health was poor; ergo, the reason that I was living there. When my cousn exclaimed "You should be taking your mother on trips," I said that I was NOT the travel coordinator, I would not have time for that in my myriad of duties and that I was already suffering from exhaustion." I almost lost it when my cousin said that, but I kept it together - somehow.

Having worked in hospices for nine years as a social worker, chaplain and bereavement counselor, I saw this behavior in siblings like yours more than I care to remember.

Suggestions:

Realize that your sister is ignorant (and perhaps self- centered?). Therefore you cannot expect her to operate in the realm of reality. This way, you can set a boundary between you and her about anything pertinent to your parents’ end of life care. You can tell when you’ve set a boundary when you no longer react emotionally to her comments. You can’t expect a blind person to walk around a mall without at least a cane. So why expect her to be able to see the reality of what you’re doing when she’s out of state and hasn’t the awareness of what you are going through? No longer give her the authority due to her lack of awareness etc. to have power over you. She might be projecting her own guilt on you for not being involved.

Another idea is to send her a copy of the paperback, “The 36 Hour Day.” If she’s open to learning anything, then she might come around.

A third idea which might reveal her inner state is say something like, “Getting out on weekends is a great idea. Since my time is taken up with their ‘xyz’ activities during ‘abc’ days and I am working M-F,” maybe you could come here once a month and spend a weekend with them? Then if it works, maybe I could do one weekend a month.” See what kind of reaction you get. If she makes excuses then all you have to say is something like, “That’s too bad, it might have been a good idea.” That way you reveal her attitude while telling her on a polite way what your boundary is.

Word of warning: When it gets closer to your parents’ transition don’t be surprised if your relatives appear out of the wood work telling you what funeral plans should be and how to divide up the property. I am not saying this will be true in your case, but it happened quite a bit in my experience and if there are two or more relatives that come you might find yourself outnumbered and prone to be the victim of mental force and manipulative shameless behavior.

So have a plan made beforehand and gather what resources you might need.

I would strongly suggest some one beside your husband and sister to talk to once in awhile.

Blessings upon you for the care you are showing your parents.

Well if it were me, my sister would might get an expletive filled phone call. But since that would only increase stress & blood pressure, and do no good. Seems like a good idea in the mind tho lol. I would ignore it. Completely. Did you suddenly decide to let your sister run your life? Of course not. But you reacted that way. But now that you have calmed down lol.
Take your power back and completely ignore it. You don't owe her a conversation, or an explanation, and a phone call. Live your life the way you want to. If she has free time, she can drive in down and do it. I'd completely act like you never heard it. If she brings it up, you can volunteer her the way she did you.
As for your dad, ignore it too. You didn't say if he is home or at nursing home. If he is in a NH, they have activities. Most didn't last an hour, during them.
You could have movie or game night at home when he visits. Maybe some easy kids games?You'll have to help him with it. Give it a try. It might be good, or a bust.
I'm not sure someone with dementia would be good going out. They might only be able to handle a few minutes and have enuff. What if he felt tired and can't walk any more? What if he is incontinent? Who changes him and what bathroom? What if he has a melt down? Only you know him.
You could try a trip to grocery store. I don't know if he walks or in a chair. Make it a short trip. Only a few items. He might like that.
I'd keep living my life and not adding any more stress. Good luck. Sister can make all the plans she wants. Oh well.

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Hi DoingMyBest73,

I can't help but think your Dad is manipulative? Why does he choose to go about things in such an underhanded manner?
The sibling who is not involved may feel guilt, and then project it onto the one who is doing everything.
I am speaking from experience.
So what I can offer you in the form of advice is this. Look after yourself.
Don't ring every day, especially if he is prone to complaining. Every other day, or once/twice a week is enough. With years of this going on in my own family, I no longer speak to my sibling at all, and whenever I was told "your brother says...." I would respond with "Oh that's interesting, get him to do it."
He lives in the UK and we are in Australia.
I have also expressly stated that I am no longer interested in his opinion, and don't wish to hear it from my parents.
I suggest you do the same with your father. Statements like. "If... thinks you should go out on the weekends she should fly down and take you out."
It will put a stop to the whingeing, and in all honesty you are best to ignore your father's complaints and manipulation, because if you respond, he will just increase his demands.
It is a good thing to help out family, but you have your own family, your father has lived his life, your daughter is just beginning, weekends are for your family.
Tell him once, never revisit it, and any "your sister says..." comments can either be completely ignored or she can fly in and carry out her own advice.

Take care of you.

i did for my dad, more than the other 4. one lives in another state, another was a teacher at the time, the other two boys were working and i lived nearby. there were many disagreements with my father so i became the outsider, more or less with him and the others got the glory. sounds mean doesn't it! well now my brother is in same position, his daughter does work from home and handles dr and bills and medicare. i have gone over several days a week to help with dog and household and some personal care. it's great when the others give you advice as to what to do or what he should be doing when really my brother needs time to be given. there is an aide now but he can only do so much. you should make your sibs aware that you are taking on alot of the care and responsibilty and need help anyway they can help. when one isn't in the situation they have no idea how hard it is on you and your health.

If he’s bored, sissy can certainly pay agency aides to come in and take him to the museum, the casino, or wherever.

offer to let him spend time with her and her family this would be a nice vacation for him as well as your family most people dont realize what it means to be a full time care giver

here is what helped my situation...Suggest your relative attend an ALZ CAREGIVER'S SUPPORT GROUP. My sister-in-law(1500 miles away) seemed to know What I needed to be doing for her brother(and she wanted to be on his HIPAA so she could talk to his doctors and make appointments...which I would have to take off work to go with him!). I'm certain she meant well but each time she emailed me, it was another 'project' for me to take on. ( I facilitated their relationship whenever possible, but realized I could not talk to her by phone because she was quite nasty to me in the past...they continued phone conversations until he lost the ability to answer her questions).
So, email communication gives me the time to craft a civil, reassuring response to her concerns(no to the HIPAA has saved me a lot of time putting out fires!) And I did let her know my feelings about delaying opening/responding to her emails because each seemed to have a new project. I also told her how important my caregiver's support group was and suggested she find one close to her. (She has done that and finds it helpful...perhaps your sister can find a caregiver's support group. It helped me to hear the issues from someone in my SIL position during one of my meetings, so I assume she gets a little more input from my viewpoint w/o me having to try to tell her.

It's very easy for those not directly involved to pass the buck. You are not going to neglect your family to please your siblings wishes. You have to set realistic limits. Needs are infinite, but resources are limited. You can only do what your resources allow.

Maybe your sister said it, maybe not. Unless you heard it directly from her, don't let it get under your skin. She may have just agreed with him when he said he wanted to get out more.

He's at an AL - call them and find out what kind of outings they have and sign him up for as many as you can. You can also check with nearby churches to see if they have any elderly groups - maybe one of the gentlemen in the group could come to get him and take to meetings. Those groups usually schedule little day trips and he could participate.

Someone else mentioned to let him visit your sister. Great idea!! Call her and tell her it would be good for him to visit with her for a couple of weeks while he is still fairly good in the mind. If there is some kind of direct transportation - plane train, etc - use that with the direction that he must be handed off to your sister just like you do with children. - or meet sis half way to deliver him.

Weekend trips to cultural events can be a hassle contending with trans-portation as well as weekend crowds. Not to mention that you are already providing extra attention during the week.

A look at the unit’s activities calendar and conversation with the staff can determine if he is participating or choosing to rely on his family for entertainment.

Reviewing the activity calendar with him might peak his interest and give clues on what might be suitable additions to his schedule that don’t include your intervention.

My brothers and SIL are quick to make suggestions and try to delegate for my dad's care (even though I do 95% because they're too busy with work and don't live with Dad), and yet they expect ME to execute it. I finally told my brother that he can keep his peanut gallery comments to himself, or feel free to execute the idea himself. Let's just say he was PISSED, lol.

Your dad is in a safe place but the caregiving never stops. Tell sister the weekend is your family time. His care during the week takes a lot of time away from them. Sometimes AL facilities have trips to other places besides the grocery store. Find a senior companion service that vets all companions for the museum trips, etc. and sister can pay for it. Ask the AL for ideas.

Your Dad lives in an AL. Don’t they have activities?

If not, send your sister a list of different transportation companies, so she can plan and pay for these outings for Dad.

I would very clearly let your sister know that your plate is full and you are not inviting anyone to add more onto it. You can even suggest that he move to an assisted living facility near her and then she can give up her life to initiate all of her great ideas.

Aside from your sisters back seat driving, I would talk to the AL facility to see if they can try to engage your dad to participate in any activities they have going on. Maybe pair him up with someone that is on the same physical/mental level as he so that he has someone to meet for lunch or play a game with, etc.