Boundaries

Saya_G

Hello all,

It's been a while since I've written. I've been busy taking care of loved ones. My mother passed away a few months ago, she had dementia and other health issues. My oldest sister also has dementia. She is in assisted living (as was my mother for the last two years of her life). 

I have been taking care of both of them for many years, pretty much constant for the past seven or so. I am burnt out. I'm getting older and want to have some enjoyment during this last portion of my life (I'm almost 70, my hubby nearing 80).

I know it's part of being codependent (which I am), I just don't know how to set boundaries. Even before my sister developed dementia she wasn't easy to deal with - very negative. She has few friends and her only child hasn't spoken to her in years (I reach out to her daughter, she said she thinks it’s best to leave things as they are - so no help there). One of the biggest problems is that sis is sweet as pie, but not really.

I've always gotten along with her, but only because I avoided topics or situations that would cause an issue. At the time, I was an adult living my life and she was living hers. Distance and avoidance of issues worked for me! Until it didn’t.

Problem started when she moved near me to help take care of our mother. Problem was she didn't really want to help, she apparently just felt that she should. She complained ALL the time. My mom complained about her. I was in the middle most of the time! 

Then my sister got cancer, I ended up taking her to all her appointments, chemo and radiation treatments. Honestly, I was okay with helping - after all cancer isn't anyone's fault. Problem was, that was just the start.

Soon after I was preparing both of their meds, cleaning their house and doing all their errands. Sis was getting stronger! Which was good, but she increasingly complained that "she didn't sign up for this shit" - that meant she didn’t want to help take care of our mom! (Even though, as I saw it - she hadn't been taking care of anyone - not even herself.) I suggest that if she was that unhappy she could move back home (home being several states away). But she said that wasn't the answer - so she stayed, and continued to complain. At the time we didn't know, but she was at the start of developing dementia herself.

Then sis broke her hip. It was more than I could do 24/7, so I moved both mom and sis into assisted living. Still, I was the primary decision maker for both of them. I was at the facility 3-4 times a week - sometimes more often.

By that time sis's dementia was developing more quickly than our mothers - I was told that both were mid to late stage. As I’m sure you are all aware, dementia presents differently in different people - neither mom nor my sister wanted to be in assisted living - and they made everyone know it! They both felt they could still take care of themselves! So neither tried to settle in! By then both were in wheelchairs and had trouble getting around. That went on for over two years, then our mother died.

Since mom passed I find myself feeling increasingly burnt out - I want to be done! I resent my sister for being so passive aggressive that she has no one else in her life to share in the responsibility of caring for her - like her daughter! Our other sibling live 800 miles away - so little to no help there. Sis is healthy! Honestly, God willing she could out live me - which is great! But caring for her may be the death of me!

The facility has threatened several times to kick my sister out because she's a handful to take care of - sweet as pie, just refuses to follow their rules and fights them when it's time for meds or to change clothes, etc. And, she hasn’t bonded with any of the other residents!

Still I know I should be able to take time for myself and my husband - after all she is in assisted living!!! But I feel soooo responsible for her that at this point I get nervous just thinking about taking a trip out of town to get a break! (We've tried, seems every time we try my sister has an emergency or gets sick - so we have to go home!)

My hubby is so tired of us sitting and wasting what health and time we have left! How do I set a boundary in this situation ? 

Thanks for any input.

Saya_G

SusanB-dil

Hi Saya - So sorry you are dealing with all that, and second time 'round...

Who has POA for sis? If not you, you are not obligated to be on-call 24/7 again for her. Not sure why you feel you are the one to be responsible to take this on? The facility is threatening to 'kick her out', but check that you have the right to say 'not to my house'. Burn-out is real. It is time to take care of yourself and hubby!

And yes - it seems that early-onset does progress more quickly.

housefinch

Therapy, and making sure you are not durable POA. Hugs to you.

mommyandme (m&m)

So sorry for your loss and struggles. It’s all too much. I hope you can take a step or more back. Thanks for the update.

harshedbuzz

@Saya_G

Welcome back. I had wondered how you were getting on.

Please accept my sympathy on the loss of your dear mom. You were her staunch advocate in some difficult circumstances.

It sounds as if your sister has always been a difficult individual and that dementia has just robbed her of the social filter needed to manipulate people. It could be she has some underlying mental health issue. It's interesting you say "cancer isn't anyone's fault". Dementia isn't either. But that doesn't mean you have to be at her beck and call if she's properly placed and getting her needs met there.

It would be appropriate to institute some boundaries. You don't have to inform her, you would just decide what you're willing to offer and offer that. You may even find that visiting too often makes you a trigger for what she can no longer have. Phone calls don't need to be answered. You can ask staff for updates.

Is she in a hospitality model-AL or more of a high acuity AL for MC? If it's the former, it's not likely the unimpaired residents will be interested in bonding with someone who has had a cognitive shift. She might do better in secure MCF with dementia-informed care and activities.

HB

Quilting brings calm

I second HB. In addition- you don’t have to tell her when you are leaving town or even why you haven’t visited for a few days. Just let management know if you leave town. Mom always invents an emergency if she knows I’m headed out of town. So I just don’t tell her anymore

Delmar2024

https://alzconnected.org/discussion/68684/boundaries

I am so sorry you are going through this difficult time. As much as you love your sister, you must give yourself a break. Do what you can and let go the rest. If the facility does not understand about dementia I would find that to be a problem since most people with dementia are not in their full mental capacity. Hang in there do what you can since her own children have not taken responsibility. I understand fully. My brother is in a nursing home and I am the sister in New York. I used to run myself into exhaustion but I cannot anymore, I too, am older and I need to live as best I can. Good luck give yourself a break find something for you and release the guilt trip. Best to you.

H1235

Sorry to hear what you are going through. I’m a list person. So maybe make a list of all the things your are currently doing for her. Then go through that list and decide what you can cut out. I would think a once a week visit to restock snack, and personal items should be possible and if you plan ahead maybe even longer if you need to get away. She is in a safe place!!! You are not leaving home alone and unattended. If the facility needs you there to calm her down or handle problems then maybe it’s time for a higher level of care. The facility is being paid to care for her. They need to do that and maybe you need to let them. If she is calling you and making unreasonable demands, block her calls. The facility will call if there is a real problem. Make the change gradually if that would be more comfortable for you. Start reducing the number of visits each week or block her calls for a day here and there so you can do something for yourself. Take a day trip with your husband then work your way up to a real vacation. You are being a great sister, but you need to be a wife too. Think of what your husband has given up because of all of this (not having his wife to do things with). I’m sorry I don’t want to make you feel guilty, you don’t need that. But it sound like you need some balance. She will be ok, go and live your life!