Burn out

Saya_G

how do you all deal with burn out!

I just visited my sister, her situation is dire. Can’t walk (broke hip 2 years ago - the original reason she’s at assisted living; then broke both legs a year later - her fermur bone literally snapped, the other leg broke when she went down ), legs severely swollen (she refuses to elevate them or wear the padded boot that would help), open sores on her right foot (she sees a doctor most every week - the sores are not being ignored), because she can’t walk she needs help transitioning from chair to bed, or to use the toilet (she fights them every time they try to help her transition out of her chair). She also fights sleep!

Okay, I get it - I’d be unhappy too - but I’m pretty sure I’d try to make the best of it! I don’t know, maybe not! But I hope I’d at least try! Bottom line her situation is not good!

I love my sister, but never wanted to be her caregiver or her ‘everything’. I’m getting older (almost 70), and I’m still healthy enough to enjoy life - being her caregiver ties me (and my hubby down)!

Besides that, she and I look at life differently, she’s not a bad person - just so negative. she’s not been happy for a long, long time - well before she was diagnosed with dementia and her physical issues happened.

She has one child, they haven’t talked in years - I reached out to her daughter - she’s not interested in reconnecting. Sibs live out of area, and have issues themselves (mostly health). They know I’m burned out, are sympathetic - but don’t seem to realize how burned out I am! But, even if they could help, that would require a move across country for my sister - I doubt she could make it easily.

Biggest issue is that she doesn’t want to live in assisted living. EVERY visit ends with her telling me she doesn’t want to be there. I KNOW SHE DOESNT WANT TO BE THERE! But there is no real alternative - I CANNOT bring her home (she once said to me, “I thought you’d be there for me” - talk about guilt trip!), besides it being too much for me, my hubby would not be happy!

She refuses to find anything good about being there, has not tried to develop friendships - she just wants me to take her home and take care of her!

I’ve cut my visited to twice a week for my own mental health!

I just don’t know how long I can be there for her! During our visit today she start complaining, said she wanted to go home (meaning a modular home that my hubby and I let my mother and sister live in before her fall - our mother has since passed). I wasn’t snarky, but I did say, “why would you want to go back there, you were unhappy there either too!” She didn’t respond.

it just came out - but it’s the truth! I’ve been listening to her be unhappy since she moved here ten years ago! (Before she moved here, I could take a long distance phone call every month or so with her complaining - but full time is too much.)

Now I’m unhappy!

Help!

SusanB-dil

So basically, sis sounds like a pessimist… and the negative is dragging you down. I think you are wise limiting the visits. Agree - do NOT take her just so you can cater to her. It sounds like her 'guilt trip' to you is more of a manipulation tactic. I'm sorry she is doing that to you, but don't fall for it.

I know - you care, and all of this is hard. ((hugs))

harshedbuzz

@Saya_G

I had wondered how you were getting on, thanks for checking in. I'm so sorry it isn't a happier update.

Is your sister taking any psychoactive medications? I wonder if she'd benefit from something to improve her mood. Have you tried laying on the validation for how she feels— which, at this point, seems 100% justified— to see if being heard with empathy dials this back or would she just feed on it?

With my dad, laying on sympathy and a hope for returning home got him into a better headspace and made visits easier— we could talk about all the things he planned to do. It was utter nonsense, but easier to listen to. With my sister, it just made her negativity more entrenched as she died before she progressed to dad's degree of impairment. I found plying her with sugary treats at each visit the best distraction; when she went to the dark side I excused my self to use the restroom and ghosted.

How impaired is your sister cognitively? Is she still fairly oriented to time in that she'd noticed if you took a sabbatical from her negativity? Is she still at a point where she might showtime during a visit if you had someone with you or visited in a public space in the facility? This worked really well with dad when he first moved and was volatile. Could you check in with staff for updates and to monitor care and skip the visits with her?

HB

Iris L.

I see that dementia was mentioned. If this is so, she most likely has anosognosia. So she will not realize she is bored and do some small things to make her life better. She has lost the capability to initiate. Also, most PWDs talk about wanting to go home, even those who are still living in their own homes. They want to pack, and do pack. Validation of her feelings can help her in the moment. But validation of her feelings probably won't change her desire to "go home" or change the packing. There are many threads regarding this.

Iris

H1235

Loosing independence is a cause for many with dementia to become angry and depressed. The anosognosia (inability to recognize her limitations) is probably also a factor. Medication may help. I’m trying to accept that my mom is just not going to be happy no matter what. It’s very hard! I get the guilt trip placed on me a lot. If she is being taken care of I would strongly recommend you cut back on visits. Make them shorter or less often. You should not give up your happiness! How dementia is affecting her is sad and heartbreaking, but it’s not your fault and you and your husband should still be able to live your life. Good luck.

Saya_G

First thank you all for your kind replies. Just knowing others understand helps.

Since I last wrote the facility has given me a vailed threat of kicking my sister out due to her being so hard to deal with, and they say that she has started being physically aggressive with staff. Ugh!

About a week after that meeting, I had knee replacement surgery, so I’ve been focusing on my own recovery!

harshedbuzz, she is on meds for anxiety and depression. The facility gave her genome test so that they’d know which meds would work best with her DNA/system. I’m not sure I’ve seen much behavioral improvement since the testing and implication of meds that are purported to work better with her system. And yes I have tried to sympathize with her situation. I’ve told her that I understand how she feels. I’ve told her that until we can get her sores healed, and then get her the therapy she needs to build the strength in her legs so she can walk again, we can’t even talk about taking her home - I’ve tried to give her hope that she can one day go home (honestly knowing that she’ll most likely never live outside of a facility again).

I can’t really answer your question about her impairment. She was originally diagnosed with pseudo dementia (about four years ago) - which is often curable with counseling or depression medication. But she refused to see a counselor, or to change anything in her life that might make her life better - like reducing her negative outlook. As I said in my previous posting, she has always been negative. Sis broke her hip in Nov three years ago, she was originally place in the facility she’s at just to get rehab. My sister and mother had lived together prior to sis breaking her hip. Me and my other sibs had already decided to place our mother into a care facility after that year’s holidays. Our mother already had advanced dementia, and had her own physical limitations. My sister refused to do the needed therapy to build the strength in hip so that she walk unassisted again - after a while, she could walk around her room with a major limp, but preferred her wheelchair. Ultimately sis decided to stay in the facility so that our mom was not alone (it was her choice). Since then my sister’s physical issues have increased, as has her dementia. How much does she truly understand? I truly don’t know. By the time that our mother passed, my sisters needs had increased to the point that her care was beyond what any of us could do 24/7 - at this point she had to be lifted from her wheelchair for any needs she has - we are all in our 60s or 70s - it’s just more than we can do.

As for now, there are days that she speaks word salad - but the meaning, which I try to act like I’m not understanding, is usually that she doesn’t want to be there. On good days, her tongue is sharp and to the point - some days she point blank blames me that she’s there! I don’t think she’s blaming me for her issues - she just doesn't understand why I can’t take her home and take care of her!

The first time I visited after my surgery (after a two week absence due to my own recovery) she greeted me at the door by saying - “good you’re here, now let’s go! I want out of here - now!” I told her that we couldn’t leave, I was just there for a visit. The remainder of the visit consisted of her complaining that no one there liked her, and she hated it there, and she was going with me when it was time for me to go. When I left she cried, and one of the staff came over to give me the chance to leave without her trying to force her way out of the door.

I hate to say it, but I’ve decided to cut my visits to once a week - it emotionally drains me! However, if the facility does go thru with kicking her out I might have to cut my visits more; they’re saying she would need to go specifically to a true memory care facility (most in our area are assisted living that take dementia patients). The closest real memory care facility is at least an hour plus drive from our small town. That won’t make it easier, but maybe it’s what she needs.

I wish her life was better.

Saya_G

NizhoniGrrl

Once a week is enough. You do what you can do. I’m sorry it is so hard. If they can’t get her meds right a move to a MCF might be best and maybe even better for you? Visits twice a month? The stress of her being in a place that is also a bad fit could be adding to your anxiety visiting as well.

harshedbuzz

@Saya_G

I am so sorry to hear that the situation with your sister continues to wear at you.

Unfortunately, it sounds like your sister's negativity has been amplified in the context of her progression. It also sounds as if her anosognosia and worsening lack of empathy is driving her thinking around her getting out of a facility.

I wonder if the threat of being turfed to a higher level of care with more dementia-informed caregivers and activities might be more appropriate now. Emotional intelligence remains well into the later stages of dementia and she's likely picking up vibes from staff who find her tiresome. With a better staff to resident ratio, she might get more attention.

That said, so long as you are collaborating with her facility to maintain care, there's no reason to subject yourself to her unhappiness. You may actually be a visual trigger for her making it a kindness to take a break.

HB

housefinch

My 3 thoughts:

Memory care

Antipsychotic medication trial

Take an extended break from visiting until 1 and 2 have been done

HollyBerry

To me, as you've described it, this sounds like the relationship between a PWD and their caregiver/partner/whoever they are closest to. That person (me…) is always the one at fault, they're responsible for everything that's wrong in the PWD's world, they're the one who's supposed to magically make it all better, etc etc. The negativity you're hearing can be from depression, progression, and underlying temperament. I agree with the person above who suggested that her dementia might be the most important thing for you/caregivers to focus on, since her physical problems are probably not going to improve. If nothing else, framing her behavior in terms of dementia might give you a different perspective on it - this is the disease speaking and her brain really doesn't have the capacity to interact with you like she would have if her brain was functioning properly.