Reasons for placing Mom

Saya_G

Okay, I know I have posted so much lately! This just seems like so much! 

This morning the business agent from the rehab facility that my sister is at called (sis is getting rehab for a broken hip). She wanted to know what the game plan was for my sister's care!!!

Why is she asking me??? I told her that I do not have a POA for my sister, that I have not talked to her doctor or therapist about what her needs are! My sister has been diagnosed with pseudo-dementia (I suspect full-blown dementia, but I digress). I asked business agent gal what is the doctor is telling you? - she says nothing. I suspect that is probably true! Sis has terrible insurance (avoid Cigna HMO at all costs! It took the hospital five days to find a rehab facility that would take her insurance. That was last Friday, late afternoon. She did not get therapy until Monday. Per the nurse at the facility, my sister is getting ONE 1/2 hour session daily - that's all her insurance will allow! The session consists of her walking up and down the hallway at the facility for 1/2 hour. When I talked with her late Monday afternoon she didn't even think she had gotten a session! In this case, I suspect that walking up and down the hall did not even feel like therapy!). 

Sooooo, I asked the business office gal, so can she drive when she goes home? Does she need a walker? Or possibly a cane? How long will it take her to heal? Will she be offered at home care - like a visiting therapist? She said I'm not a doctor, I can't say. She was very nice. So I was polite back to her, but I did point out that I was not a doctor either, yet she had been told to call me and ask what my sister's care plan is. Which by the way I have no legal right to do (remember no POA). 

She was very sympathetic, said she would try to find out the information and call me back! But I am still not going to take on making the major decisions! My hubby says it sound like they are just punting it to whomever they can due to her crappy insurance. 

All that and I am still grappling with have placed my mother earlier this week. At this point, I am the one she hates (even with her dementia she has lucid moments). It seems to me that anger is such a strong emotion that, even with dementia, my mother holds onto it longer! All my sibling were onboard with the decision - but I am the face of her placement! (I have four living sibling, three live about a 1000 miles away, the other is the sister with the broken hip and dementia symptoms!). 

So I made a list of reason why we placed her to make myself feel better. Long list but here goes: 

Mom wasn’t getting her meds regularly (she and my Sis with the broken hip live together - sis forgets often, which lately is very often). Even when I called to help remind Sis, Mom was given PM, when she should have been given AM.

Mom was only eating one meal a day (plus 1 or 2 Ensures). That one meal was from a local Mexican restaurant. Burnt out on Mexican food, Mom often had a burger and fries.

Mom’s knees were getting so bad that she is falling more often and needs help to get out of bed or chairs. Sis does not have the strength needed to help her if she falls (Sis weights just over 100 #s; Mom about 170 #s). Besides the possibility of Mom’s falling causing injury, like a broken hip.

Mom’s increased need for using a wheelchair – which is not possible at the trailer due to door openings and toilet room areas.

Sis is exhausted and emotionally spend. She has starting to resent having come to stay with Mom – that is NOT to say that she doesn’t love Mom or doesn’t want the best for Mom – but at 72, almost 73, she deserves to have a life too. (Mom had her at age 13, not that much difference in age.)

BIG ONE: Sis is showing strong signs that she too had dementia. (She has been diagnosed with pseudo-dementia. Someone with pseudo-dementia - or possibly real dementia - can’t be responsible for taking care of another person with dementia.)

Sis broke her hip, even under the best of situations, a 72-year-old woman that has had a broken hip can’t be expected to have the strength and energy to do what is needed to care for another, more elderly human being (with or without dementia).

Mom has started to experience ‘sundowners’, she often asks to go home (she has lived in the same place for over 15 years). Sis told of two recent episodes when Mom got out of bed during the night and went outside (not the first time, but the first time in a while). One of the two most recent times, Mom appears to have walked down the ramp, thru the yard and was walking towards town. By the time Sis awoke and noticed that the front door was open, Mom was already about ½ block down the road. The other recent time Sis awoke, all looked normal. She went outside to have her morning cigarette; she then noticed that Mom’s walker was in Sis’s car. Apparently, Mom had gotten up, gone out, walked down the ramp, and put her walker in the back seat area of Sis’s car – we can only assume that she thought that they were going to go somewhere (Mom has not driven for several years). When Sis didn’t come out too, Mom must have walked back inside, without her walker, and went back to bed – because that is where Sis found her.

Mom having sundowners is causing Sis to lose sleep; she now feels the need to keep one eye open in case Mom tries to leave again. Sis is sleeping on the sofa so she can better hear Mom if she roams. (There are alarms on the doors, but they confuse Sis, so she doesn’t use them. See above.)

None of Mom’s other children can give the 24/7 care that she needs. I have a hubby with a heart condition, and two grandsons living with me. Besides our house is not big enough for anyone else to move in. I am already handling all my Mom and sister's medical and business affairs, as well as cleaning their house and buying any supplies they need (I do ask to be reimbursed). Other three sibs all have 40 hour a week jobs and live over 1K miles away.

Mom’s hospice nurse feels it is time to place Mom, largely due to Sis’s inability to give Mom her meds on time and to assist Mom with her daily hygiene needs. As well as Mom’s likelihood of falling more easily due to her decreased mobility. (All mentioned before, but now mentioned by a professional/ expert in care.)

Mom’s needs for assistance are NEVER going to decrease. Placing her now will give her time to establish relationships with the caregivers at the facility and possibly receive better care.

If you're counting that is 12 reasons.

 The ONLY reason against placing her: She has ALWAYS said to NEVER put her in a home! She said if we can't take care of her just leave her alone at home and let her die. Obviously, we can't and won't do that! 

So how do I stop feeling bad - I am not sure if I can take Mom's anger. I am still in the "we suggest you don't visit to give her time to settle in" phase. 

How do I not put myself in the place of replacing the responsibility of my mother, with the responsibility of my sister? (Sis is widowed, and has one child. She and her daughter have not spoken for close to 10 years; daughter was notified of her mother's situation, that was over two weeks ago - no response.)

This all just stinks!!! I guess I just needed to vent to people that I hope will understand.

Stuck in the middle

That's 12 good reasons for placement, and one BS reason not to.

When your mother said "let me die at home if you can't take care of me" she was demanding that you take care of her at home, because she knows you won't leave her to die alone as well as you do.  She has no right to demand that.  In your shoes, I would place her and visit occasionally, walking out as soon as she turns angry.  You have already done far more for her and your sister than most people would do.

As for the sister, let the rehab facility figure it out.  They have professionals whose job it is to find a NH that takes Medicaid (I assume she has already been enrolled, given her finances and recent surgery).  You are not your sister's keeper.  

You need to defend yourself here.  One of the first things you learn in water rescue class is how to keep the person you are helping from drowning both of you.

Gotta go.  Bestwishes

loveskitties

Dear Saya,

You sure do have a lot on your plate right now.

Two things you can put in the garbage is the guilt for placing your mother and not taking on your sister's care.

I understand the hurt of being the face of the "bad gal" with your Mom.  It is not easy, especially when all you do is for her safety, health and welfare...and because you love her.

I take my parents to their doctor appointments and see them home from ER visits, which have been 3 in the last few weeks.  While I do see them at other times, after last dr. time my dad told my mother he did not want me to come back again.  Even though I know if his mind was not compromised he would never say that...it still hurts.  

We just have to soldier on, and know that we are doing the best we can for them.

Guilt is only for those who have done something wrong.  You have not...you give all you can to this.

Here's hoping that things begin to get better for you on all fronts.

Hugs

NizhoniGrrl

You have gone above and beyond for your family. Do not feel guilty about placing your mom. You had to be adult in the situation and your sister was not capable of doing what was best for herself and your mom. Yes, you'll take grief for it. Just remember you did the right thing, no doubt, in the circumstances you are dealing with. Stay strong!

Cynbar

I agree with everyone here, you have done a yeoman job caring for your mother and sister. Sometimes, despite our best intentions, a loved one needs more care than we can provide. And they are aware enough to use guilt and anger as weapons against the ones who have worked hardest for them. But we have to be the parents now and do what's best for them, which is usually not what they want. It sucks. I am so sorry you are facing this when I think you know, deep in your heart, you made the right decision.

Regarding your other crisis, I do think you should put some thought into a plan for your sister since it sounds like she can't do this for yourself. Insurance coverage for rehab can end quickly. I imagine the business manager is looking to see what the general plan is. Can she go back to where she was living (I seem to remember that you own it)? Do you think she will be able to manage there without the pressure of your mother's care? And most importantly, how much are you going to be able to do for her going forward? I know you're not the POA, but doctors and facilities are always looking towards the closest person to help them make a plan. It's a shame it's more on your plate, but someone has to do it.  I would call the social worker at the facility and ask when they expect her insurance coverage to end, and if they plan to schedule a meeting to evaluate her progress and need for outside services. She should qualify for a visiting physical therapist and home health aide, IF her insurance will pay for it. If she can't go back home, they should know this as soon as possible.

sandwichone123

Cynbar is much nicer than I am. I would set a "silent" ringtone for the rehab facility and not answer. After they leave a voicemail I would call back after hours and leave a voicemail saying I am not the POA and I do not have a say in the plan. If they harassed me I would stop calling back.

You do not have a moral responsibility for your sister's care (IMHO), and it does not sound like you have a legal responsibility for it either. You will not get credit or appreciation for what you do, and it detracts from the other responsibilities you really do have.

Saya_G

Hello all, 

Thank you all for your support. I know that the 12 reasons are enough; but it is hard to listen to your mother beg you to come get her. It is going to be hard, the nurse that helped my Mom call me today warned me that her pleading may never stop. I’m going to have to get thick skinned, yet still be loving. 

It is hard to take on the role of making decisions for a parent. It is not even close to what it is like to deal with a toddler (which someone I know compared it to). Even my outlook is different – a toddler grows up and learns what is okay to do and what is not. I can see and end to that stage of a toddler's life, on to a more mature child. With dementia you have an ‘adult’ that doesn’t know what is going on a lot of the time – and is never going to get better – but they have the mindset that as an adult they have the right to do as they want. L 

I am not going to abandon my sister – yes, she can continue to live rent free on our property. As long as she can do so without assistance. And I am willing to help to decide the direction of her treatments, but I do not want to be the only one contributing to the plan! I need to know what the doctors and therapists think is the direction she should be going. 

I NEED to be able to say that this is the direction that the doctors think is best – why? Because in an anesthesia stuper (after her recent hip surgery) she blamed me for putting her in the hospital. I had to do a lot of talking to get her to realize that I wasn’t even around when she fell, and that the hip she broke in her fall was what had put her in the hospital, not me! The stuper went on for three or so days! I’m not sure if that is an indication of ‘true’ dementia or if folks with pseudo-dementia also have issues with anesthesia. (Another question for a good neurologist. After the beginning of the year – with the new insurance plan – we will be getting a 2nd opinion.) 

That said, I do plan to have an ‘exit plan’. I heard recently on a YouTube video that caregivers need to set boundaries. That is, tell my sister that I will be able to help a certain why, for a certain amount of time. I’m not quitting you at that time, but after that set time, we will need to re-evaluate the direction your care is going. I guess I’ll be saying that I can’t promise that we’ll go on with her care in the same direction forever – and that we will need to have a worst-case scenario plan – a plan that my sister knows and accepts in advance. I NEVER want to place a LO again that doesn’t understand that if they have dementia (or any other debilitating disease) there likely will be a time when placement is on the table.

I have already started talking to Sis about getting a 2nd opinion, because in my opinion just saying she has pseudo-dementia and putting her on a mild antidepressant is no longer enough! She is not getting better – so if pseudo-dementia is treatable – then let’s figure out a treatment that works. If it turns out to be true dementia – then let’s get treatment for that going, while giving her time to make the choices she wants to make before she can’t do so later.

Thank again for all your support and input! This group is truly wonderful! 

M1

Saya, as much as you don't want responsibility for your sister, it seems to me like you already have it. If her address of record is at a property that you own and she is not capable of making decisions for herself, I honestly don't see how you can avoid being involved. It may require an attorney to sort this out. It's understandable that the facility would contact you, who else do you expect them to contact? I don't think you can have it both ways here. If you really don't want the responsibility, I doubt that you can continue to offer her housing. But I would get an attorney to help you.

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