Saga Continues

Saya_G

Update form my How? posting...

So my sister is a bit better mentally, some of her issue may have been the surgery. Still, even if she gets back to where she was (her normal confused state), we can't expect her to take care of our mother. At this point I do all their extra stuff: handle both of their doctors appts; am their transportation for most outings; clean their house; pick up any supplies they need; handle my mother's finances; and the like. Hospice now gives Mom her baths, and preps her meds for the week so they are just in a dispenser to be handed out. 

My sister is her full-time companion and is responsible for handing Mom her meds at 9am/9pm daily. (Sis refuses to cook, so they drink an Ensure some time during the day and go to a local Mexican restaurant for dinner - every night! Sis says the re-fried beans gives them protein. Stove has literally not been touched in years - I had to dust it off while cleaning!) 

They watch TV and Mom sleeps a lot. Sis complains about her situation, says she has only had one day off in 8 years! First off, my mom wasn't diagnosed with dementia but four years ago - she and Mom have lived together for four years prior to that. During the first four years they ran around constantly, going out to eat, taking trips to see people and going to casino or bingo. And the first few years of Mom's diagnosis, my sis could still leave Mom home to go to the store or what ever she wanted to do. It's true that Mom now needs someone with her 24/7, since needing a 24/7 companion, my sis has only taken on afternoon to herself. But it is not like I haven't offered! She complains that she wants time to herself, complains she is going nuts locked up with our Mom all the time. I get that!! Yet, when I say, give me a time, when do you want to get out - I'll make it work. Then she changes her tune, "so what would I do by myself," or "the casino is too far to drive to by myself," or "who wants to go to lunch by themselves." Then she says, it's okay, I don't really have anything to do anyway. 

Sis moved here from across Country to live with my Mom, she says because of a promise she made to our father on his deathbed - but the truth is she came well before my Mom needed to be taken care of! My sister's job had ended (new owner brought in their own people), her only child had disowned her - they've had not contact for over 10 years, and she was by herself before moving here. I've suggested activities where she could meet people locally - but she is not interested in doing anything other than gambling. She says she has friends at the local bingo or the casino - but I suspect she really is calling folks with familiar faces 'friends'. At one point I suggested that she call one of her bingo/casino friends to go to lunch. She said she doesn't have any of their phone numbers.

Recently, sis was diagnosed with faux-dementia (dementia symptoms caused by other factors, like depression). She is on anti-depressants, but is no better about taking her own meds than she is about giving Mom hers (hospice nurse said that the last full week that my sister was with Mom, Mom was given her meds once!). BTW... I still think sis has 'regular' early stage dementia - but I am not a doctor. 

So, now sis had to have surgery after a major fall that cause a split in the left femur at the ball joint - she had to have partial hip replacement, and the split cemented. She is in the hospital but wants to come home. Doctor apparently told her she could go home, with help in about three days! During those three days she had been confused and determined to prove she is tough! She pulled out her IV, tried to get out of bed on her own and fell. The fall caused no apparent damage (thank God), but then they restrained her wrists until she finally realized if she kept trying they were going to keep her wrists restrained (she hated be restrained). I told the social worker that there would be no help at home! I am not super-woman. So the doc/social worker are sending her to rehab - she is pissed - mostly at me! 

I've posted before, so some of you will remember my situation. I am not in the position to take on 24/7 for either of them (I am doing it right now for my mother). 

During the last five days it has become even more apparent that my Mom needs more than I or my sister can give individually or jointly. 

I've discovered that:

My mother sleeps in her clothes because she has no help getting dressed or undressed (sis refuses to help). Even when I said I would help Mom was reluctant to take off her bra, because she can no longer put that on herself - at all. (Her shirt and pants take a long time for her - but she can still do them). 

My mother is often cold at night because she can't lift the extra blanket for herself (Again, sis refuses to help her with getting into bed - says she is not Mom's servant).

Mom's ability to get around is getting worse - she has very bad knees. They wanted to replace them many years ago - Mom refused, a friend had told her that it really was painful. Now, with her dementia even trying would be cruel. At this point, her knees just give out from under her - even with her walker she falls. 

My mother (with moderate to severe dementia) stated that she will probably need to go to a home, once she has to use a wheel chair all full time (she still has lucid moments - but has always declared that we are never to place her in a home, so her saying that was a real surprise). Mom's house does not accommodate a full-size wheel chair! Best we could do would be the smaller size transport chair - which would give my mother no control - since transport chairs do not have the big push-yourself wheels. And no matter which size chair she has, none would fit into her toilet room - her walker just barely fits.

My mother does like to eat three meals a day after all! No real surprise there - but sis insisted that they both liked their Ensures and one meal a day.

My mother will get out of bed if she is helped (sis lets her sleep until 3pm or later most days - only getting her up in time for their Mexican food outing). If you get her up, Mom does doze often, but at least she has times when she is awake throughout the day.

Keep in mind that my sister has already declared that she will NOT help with our mother bathroom situation/ depends - especially if the mess is a #2! (One time in the past, our mother had a major #2 accident that really messed up her bedroom carpet - my sis threw a towel over it and left it for me to clean the next day.)

My sister thinks my mother is not getting up is due to being lazy (my mother does not have one lazy bone in her body).

Okay this sounds like I do not like my Sister, that would be wrong - I love her! I think this is just not a job she should be doing. My sister is a cancer survivor (5 years) and is frail. It's true that early on she could've done more than she has done for Mom, but at this point I doubt she could even do now, what she should have done then. Sis is in early 70s, our mother is in her mid 80's (Mom had my sis when she was 13).

BTW... I had an epiphany last night - I think my sister's eating issue is a cry for help - I think that she has developed anorexia! I think that she feels no control over her situation. She weights just a bit above 100#s, at one point she weighted well over 200#s! She blames her cancer, but she continues to drop since being declared cancer free. She has almost stopped eating. 

Our mother's situation is not my sis's only issue in life. That said, she is clinging to keeping my mother at home! Crazy I know! She is not caring for our mother as she should be cared for - but right now my mother is her world, and when mom is gone - what will she have?

Problem is that for her to maintain their living situation - I have to totally give up mine to care for both of them! I have a husband with a heart condition and two grandchildren that live with me! As I said earlier, I am not super woman. 

My other sibling are supportive of placing our Mom is memory care (none of them live close enough to help). But my sister is not - the one person that needs this to happen the most! AND she is blaming me! 

Sorry for the long posting! If you made it through to the end, I am posting because I know I have to place my mother - I her POA's - I think I am covered. (Still it will not be easy.)

But how do I help my sister - especially since she is soooo angry with me right now. 

Saya_G

Quilting brings calm

My thoughts: 

Stop thinking of what your sister   should be doing.  It’s pointless, increases  resentments, and is never going to become what she actually does.  Instead look at what she is doing.  It’s not ever  going to be more than what she was doing before her fall.  It’s not at the level your mom needs. 

Realistically you cannot sustain the level of care you are currently doing for your mom.  Nor can you take care of your sister too,  

So - place your mom for 30 days respite. Determine if that facility  is appropriate for the next year or so.   Do this while your sister is in rehab so that your mom is in respite care before she comes home.  She won’t be fully healed when she gets out of rehab and won’t be able to do caregiver duties at that time anyway.

Research whether or not your sister can remain in the home once your mom is placed for long term since she’s lived there for 8 years and been your mom’s caretaker for 4.  Get your mom’s situation stabilized.  Then tackle whether or not your sister can live on her own or needs an independent or assisted living facility herself. 

don’t expect cooperation or even civility  do it anyway 

harshedbuzz

Saya_G-

This is a terrifically difficult situation all around. On one hand, you have to do right by your mom and make sure she is getting a level of care and safety she deserves. On the other, I can appreciate your concern about the impact that doing what is right by mom will have on your sister. 

Following your posts, I almost get a sense that your mom and sister have an almost symbiotic bond with each other that is often seen in families where there is an adult child with "special needs"- perhaps mental health issues? Certainly, it is telling that your sister was free to leave her previous life to move in with mom- many adults find themselves unable to do this because of adult responsibilities at home and in the community. I get that being with your mom has provided purpose to your sister's life, but I have wondered if part of your sister's motivation was related to an improvement in her own standard of living assuming she is rent-free; the prospect of losing that upon mom's admission to a facility would be terrifying. 

But your mom is already on hospice, so that day will be coming in the not entirely distant future regardless of your choice to place mom or not. 

In your shoes, I would place mom while sis is in rehab and let the chips fall where they fall. Mom's care needs have to come first. Perhaps you can work with your sister to find an alternate living arrangement prior to being discharged from rehab. 

HB

Saya_G

Harshedbuzz,

My sister does live rent free, as does my mother. We have provided my mother a place to live with no rent for about 15 years (mom pay utilities). Sis moved in, intimately helped mom pay the utilities, until she was diagnosed with cancer. Mom knew she would have a lot of medical expenses, so told sis that she would pay all utilities. Sis hasn't helped pay utilities since (has been cancer free for five years). I figured that was between them.

We have already told Sis that can continue to live rent free, our way of thanking her for her sacrifices in taking care of Mom. On especially frustrating days I wonder if sis wants to keep Mom at home to pay utilities - other days I'm not sure. I recently talked with my ?Sister's best friend, she told me that my sis thinks we pay all expenses! I explained to her that we never have! Mom has ALWAYS paid utilities (her only expenses by the way).  

To clarify she DOES love my mom, and cares! But yes, their relationship has always been complicated. At times throughout their  lives they have gone long periods when they did not talk. But yet for years prior to my sister moving in with Mom they spoke on the phone EVERY morning!

Lots of dysfunction in the family - I'm sure I have my issues too! Mine is more of being codependent - I take care of people! Problem is I am spent! I can feel the emotional and physical drain! I can't be the answer to everyone else's choices!  I'm in the best financial situation - and feel like many in my family think that since I can financially 'help' - I should! No matter the choices they make in life. Sadly, my mom included. Not now. But in the past she hasn't always made good choices either (hence why we originally offered the no rent housing). 

I suppose every family has their issues! 

Saya_G

Saya_G

Quilting Brings Calm,

You are 100% correct - I can't expect more than my sister can give! I accept that. I am just not looking forward to all the venom that is going to be coming my way via my Mom and sister for placing our Mom! I was raised to be codependent - my family expects me to take care of their issues - but in the way they want them handled! Just as I have so many times in the past! But this time, I just can't! I have to consider my Mom's needs more than their desires.

I guess I am still wanting them to like me after this is all done.

Saya_G

sandwichone123

I agree with "place mom while sis is in rehab." Also, since sis has real and/or faux dementia, tell her what you need to. The placement can be temporary for now.

I also suggest changing your ringtone for sis's calls so you can pick them up only when you're up to it. At times you may want to set the ringtone to silent. You already know what's going to happen, so prepare for it by caring for yourself. Remember that caring for the caregiver (you) is the best way to provide the best care possible for all those you are responsible for.

[Deleted User]

The user and all related content has been deleted.

Saya_G

Update:

My sister has declared that she can't remember things because she hit her head when she broke her hip. I do not think that is the case - there are no signs of injury, and this is the first time a head injury has been mentioned. That said, her claiming an injury is cause for her to receive an MRI of her head to check for an injury - which might also serve to determine the possibility of her having dementia. 

As for my mother, the ball is rolling on her placement. The social worker with her hospice is helping me get all the ducks in a row - if it works out as we'd like, she will be place about a 1 mile from my home!

Pray for me that my Mom's placement goes smoothly.

Quilting brings calm

That’s a good update!  Not surprised that your sister latched onto the fall as the explanation for her memory issues.  No one wants to admit that their memory issues are permanent. I hope your placement plans go smoothly.

mommyandme (m&m)

Wow, you are accomplishing so much in little time.  

Sending thoughts of peace your way.

abc123

Dear Saya, I hope everything goes smoothly with your Mom’s placement and your sisters recovery. Please keep us posted. There are a lot of people here who care about you and wish you the best.

Saya_G

Sorry for the group replies, it just seemed to be more efficient!

Sandwichone123,

Sister’s cell phone has been acting up lately, I suggested several months back that she get a new one – she didn’t. Ironically it totally bit the dust the day after her fall! I did pick her up a new phone, but she hasn’t come close to figuring out how to use it! So, no calls coming in from her directly! 

Victoria2020,

I agree that my sister most likely needs help herself, but that may be hard to accomplish. She has so far danced around giving anyone control over any accounts or given anyone a POA. All we can do is try to convince her that she really needs to trust someone – me, one of our other siblings? I’ve been pushing that hard, especially since she fell – I am hoping she is wavering. That said, although you all will understand this, I am hoping her issue is ‘just’ severe depression and that she will rebound after the responsibility of being our mothers 24/7 companion will lessen her depression. Hopefully we will know better what we are dealing with after the MRI results are in.

Good point on her driving, although with a broken hip/leg I am pretty sure that will be out for a while – at least enough time for the MRI evaluation.

Quilting brings calm,

I’m hoping that the MRI does give us some answers as to my sister’s ‘confusion’ – I stopped by yesterday, she was madder than a wet hen at me – why? Because she didn’t remember that I have been up to see her everyday – except Thanksgiving (I was cooking for 10 people that day). Once I reminder her I had been, with her nurse backing up my claim, she calmed. 

It’s frustrating for me – I can’t imagine how frustrating it is for her! 

Mommyandme, 

Things may happen faster than it usually happens because my mother has so few assets the financial way to placement will be a lot easier than some might have to deal with. Also, there are only three facilities in our community, so I already knew which we would prefer she get into. Fingers crossed it truly is that easy! 

Abc123,

I will update. Thank you for your kind words of support! 

Thank all of you that have posted! I so much appreciate your input and especially your understanding! 

Saya_G

harshedbuzz

Saya-

You are a wonderful sibling. 

I hope the MRI brings enough clarity to offer you next-steps in resolving this situation. 

Perhaps her cognition will improve once out of the hospital and rehab. There was a woman in mom's support group whose husband had very early Alzheimer's which was diagnosed when he crashed and burned during a hospital admission. He was one of those PWD who manifested with personality changes that were more obvious than memory loss initially. Once home he did pretty well for a couple of years. 

Perhaps you could make the continued rent-free accommodations contingent on having a POA to be able to step in and pay her bills, etc should she have another fall in the future. If she balks at you having "control" maybe she'd be willing to name another sibling for now. Otherwise you may be looking at guardianship in the future which could be messy.

HB

abc123

I definitely agree with HB about the DPOA for your sister. I would make that a major priority. Maybe you could tell her she needs a DPOA because of homeowners insurance on the house or something related to the house. 

Good luck with this.