I can't do this any more

Saya_G

I can't do this any more. I thought it would get easier when I placed my LOs (yes two of them) into assisted living. It has not. In ways it is even harder. And I'm not talking only about the emotional part of placing them - I am physically exhausted too.

My guess is that my mother is in stage 6, leaning towards stage 7. She has good days, but mostly is confused. Since going into assisted living it has been a nightmare. She is self-pay until her limited funds run out, then she must go on medicaid. That severely limits the assisted living facilities near me that will take her. The facilities near me that do take medicaid are not top facilities. Most are old, and look like prisons (the one she is at looks the best, but is severely under staffed). But even worse, most all are poorly ran. Mom has been on hospice for some time now. 

Somehow when she was originally placed, her major mood med was changed to "as needed" in her records. It is needed. Over the first few weeks of her placement I noticed that she was becoming more verbally aggressive and agitated. So I asked if her meds had been changed. I was told no, that they had not. 

I also noticed that the staff rarely has time to talk to the residents, and when they do have free time they still don't talk to them - they take a break and talk to each other. Clothes are missing already, and there are other of this type of concerns.  

Mom continued to be increasingly agitated. I brought up the topic of her meds again, this time I suggested that maybe they needed to increase her dosage, since I had been told that nothing had changed on the medication front. No one seemed to have any answers. They promised that they'd let the doctor know (a doctor that I have never met or heard from). I had heard from hospice, they said that they were visiting her regularly, so I didn't really address the meds issue with them - I should have.  There was a big problem with communication on all fronts - but especially with the facility. 

To make a long, detailed story short, Mom started pushing and shoving other residents and staff. She started telling me that they were trying to kill her (the staff, not the residents). After that it escalated quickly, I got a call telling me they were kicking her out (no 30 day notice, just we're kicking her out). They said her needs were greater than they could handle, she was an elopement issue and was too aggressive (they are not a true lockdown facility - mom did have on a wonder-guard bracelet, and there are alarms on the doors). Mom had apparently bit one of the staff that tried to stop her from leaving.

My sister is at the same facility, they had already threatened to kick her out just days before threatening to kick mom out. Sis is a smoker and wants to smoke all the time (she really is a nag about it). The facility has rules and set times for smoke breaks. Again, the staff are so short handed that they often break their own rules, which is confusing and ended up allowing my sister to stash an extra cigarette or two, and a lighter. One night after smoke break hours she snuck into the restroom and lit up. Of course they noticed that! Immediately they went to 'we are kicking her out, she's a danger'. Never mind that if they had followed their own rules she would not have had the cigarettes or lighter in the first place. 

I decided to try to transfer them, the only 'just okay' facility near me (that takes medicaid) originally said yes, but then the reports from the understaffed, disorganized facility came in - Mom's record was so filled with notes of aggression that they decided against accepting them. The only facilities near me that will take them are worse. 

Well after a lot of arguing, an ombudsman and the facilities corporate office, as well as hospice all becoming involved, it was discovered that there was a mistake on my mother's records - her needed meds had been marked 'as needed' (although it seemed to me that it was obvious that the meds were needed, especially after her aggressive behaviors increased, but apparently not) . 

So, as I had been told, her medications had not changed since being admitted, she hadn't been getting the medication since day one! It was a data entry mistake, that could have been made by hospice or the facility. Which should have been caught earlier, since I had told them several times there was a meds issue!! Problem is that one hand at the facility doesn't seem to know what the other hand is doing, my telling them that her meds needed checked or reevaluated fell thru the cracks. Mom is now on the med that were marked 'as needed' on a regular basis. Her agitation is substantially lessened. 

The issue with my sister's smoking has caused a promise of better enforcement of their own rules (which still is not happening all the time). 

I want to change facilities, but really have no other option within an hour or two drive from my house, which would make it harder to see them as often, or to deal with issues that might arise. 

My phone rings off the hook, my sister calls to complain that she is bored or that mom is sleeping too much, or that they aren't giving her enough cigarettes. She too has dementia, she can't seems to understand that there are sets times for smoking - even though I put arrows on the face of the wall clock in her room.

Then I have a husband that has had a heart attack, but is doing well for now. He is in his mid 70s; he wants to travel and enjoy retirement. He worked hard so that we could do just that in our retirement. His health is okay for traveling now, but we have no guarantees for how long.  Instead we are tied down with my mother and sister. He is frustrated and I am seeing him pulling away. 

I have other sibling, they live about 850 miles away. Only one of them, my brother, really sounds like he would like to help, but with the distance, even he can't do much. (The other two are supportive in that they thank me all the time, but I know they don't want to take on any caregiving themselves.) 

My brother is younger than me (he's in his early 60s), and has a girlfriend that seems like she would help - again if my mother was closer to them they could do more.

I have been taking care of my mother for 15 years, some of those years have been pretty easy. Before the onset, she was a pretty capable person. Still, we were always the ones that made sure she was getting what she needed and we even provided a place to live so that she could benefit from all of her SS check. Originally she was able to travel on her own and it was easier. Sister moved here to help take care of mom about 8 years ago, but shortly after became ill with cancer herself. I took her to all of her cancer treatment appointments, and have tried to be there for her too (she has been cancer free for five years). Since she lived with Mom, we have never asked her for rent to help with costs either. (Mom did pay utilities.)

Within the past few year, Mom's dementia has been getting worse. Sister started showing signs a couple of years ago of early onset, she was ultimately diagnosed with psuedo dementia. Then in November 2021 sister broke her hip, and her dementia symptoms have worsened. She still knows who people are, but can't seem to remember anything new. 

If she had someone that was willing to live with her and take care of her basic needs, she could still be at home. But not alone. She would still be somewhat easy to care for in a household that had others to help support her - I am not willing to do that! I love her, but we are very different personalities - and she is clingy. I tired to push her into developing friends, she refused and tells me all the time how I am her only! (She had a daughter that hasn't talked to her in 10 years.) 

Besides that, I don't have room for her (already have two college age grandchildren living with me). Both the hospital and the rehab she went to after the broken hip said she cannot live alone - her dementia symptoms increased greatly after her hip surgery.  

I now handle both of their finances and am the POA for both (my brother is too). 

I am about to tell my brother, who lives in a much larger city that has many more resources available for them, that the ladies need to be moved nearer to him. Not to say "I've been doing this, now it is your turn!" But because I feel like I can't truly do this any more! I am tired. My husband is tired. We are older. It just seems like we have done enough. 

Besides that, even if my brother does take on the majority of the responsibilities concerning their care - there are three of them! The other two would be more the capable of watching over things so that my brother and his girlfriend could still have breaks or vacations. I have no one!

I know that neither of the ladies asked for this terrible disease. But darn it, I may be being selfish, but when is it our turn! It is just not fair. 

Saya_G

harshedbuzz

Saya_G-

I am sorry you are struggling. Yours is a very difficult situation to be sure.

Is there any chance of returning mom to the previous facility? She seemed to be doing better there prior to her move to be with your sister. 

As for your sister, I would suggest letting her calls go to voice mail and returning them once daily when you are in the best frame of mind to handle her distress.

I get a sense you prefer to be the one making decisions on their behalf and that while having your brothers take over would provide immediate relief, over time you might regret ceding the control you have now.

HB

Saya_G

Harshedbuzz,

The facility that said they would take them, but then reneged on their offer was the original facility. The locals understood the situation, but their corporate folks were swayed by the aggressive behavior reports and were not willing to reconsider. We even had one of their folks try three times to convince them to take the ladies. 

I do think I would be okay with my brother taking over. I really am tired. I feel like I am dying inside. I see no end in sight. Yes, I would be willing to help him with what I could - but he is very capable and his girlfriend tells me she had contacts that work in assisted living.

Thank you so much for always listening,

toolbeltexpert

Saya_G wrote:

I can't do this any more. I thought it would get easier 

Saya_g I just want say you sound like super woman. I do not know how you have managed, but your doing an awesome job. It sounds like you sure need a break and I know that what ever you decide it will be good. I hope you get more time to enjoy with your husband. Your in my prayers.

dayn2nite2

I'm confused, are your mother and your sister STILL together?  In the same facility?

If so, they need to be separated.  They CANNOT live in the same facility.  Your mother is worse with your sister around, medication or no medication.

Your sister needs nicotine patches, NO CIGARETTES, no lighters and she WILL adjust.  Trust me.  I would consider moving sister further away to a NO SMOKING facility.  Slap nicotine patches on, all done.  I did this with my mother.

I don't know what to tell you - you now have 2 documented behaviorally challenged people, both who sound well beyond "assisted living" whatever that means.  

Unfortunately due to the behaviors, you are not going to be able to place each of them in facilities that other people without a history can choose.

Big part of this is you are trying to make them "happy."  They will never be happy.  And you are miserable.

I would be willing to bet your brother will not be willing to take this on and I wouldn't blame him.  And if his girlfriend is smart, she won't have any part in care because it's a thankless job, as you already know.

Stop answering the phone calls.  Let it go to voice mail.  Stop trying to be responsible for their happiness.

Take your trips with your husband.  Be available ONLY for life-threatening emergencies.  If you visit less often, so be it.

loveskitties

Dear Saya,

First and foremost, stop feeling guilty that you are not able to handle things as you would like them to be.  NO ONE CAN!

As I see it, you have 3 choices regarding facilities.  First, just leave them where they are as long as they can....not good as that worry is always there as to when their behaviors are no longer acceptable then you have a crisis and no choices.  Second, enlarge your area of looking.  Even if further means you can't visit as often.  Third, take this opportunity to get them placed closer to the rest of the family.  To me this sounds like the best solution for not only them, but more importantly for your and your DH.

For the sake of your physical and mental health, and the relationship with your husband it is time for a major change.  You have done your best and this is not a failure for you.

This is a change for their well being.  The fact that it would also benefit you, is just a plus.

Hugs

mommyandme (m&m)

Although twice the battle, I think your mom and her sister should be considered for care separately. Their needs are different and it doesn’t sound like there is more comfort to be had by either one with them being together.   If you can compartmentalize each one’s situation maybe it wouldn’t be so enormous, cause woman, this IS enormous! Holy Cow! I would be a jello ball in the corner way before now… it is UNFAIR! 

If your moms meds are sorted out finally, might either of the recent facilities reconsider?  Maybe the sister might fit into a group home setting?

Logistics sounds like a nightmare. I’m so sorry it has come to this precipice for you. Can your brother come to your space for a bit to help you sort this out? You and your husband deserve time away yesterday. 

It’s so frustrating when the powers that be “pass the buck” on their own mistakes.  Both your LOs are so fortunate to have you working on this. Im sure neither one would wish this torment on you. 

My heart breaks for your pain and agony. I’m so sorry! 

Saya_G

First, thank all of you for your kind replies and support! I appreciate all of them!

dayn2nite2 and mommyandme, 

I did move my mother and sister to the same facility. I did so based on advice from my mother's hospice folks. 

I know that many of you suggested that it sounded like a bad idea, but the hospice folks knew them both and said that they thought it would be a good move for my mother. My mother was apparently complaining so much that she missed my sister that they thought it would help with her transition to assisted living. Were they right? Maybe not. But that was my deciding factor. 

Patches were brought up as an option for my sister, but the ombudsman said that my sister has the right to smoke, and that the facility's can't force patches on her; also said that it is the facility's responsibility to provide the residents that smoke with smoking opportunities. Albeit under the facilities rules. The ombudsman also complained that they needed to offer at least one more time a day for smoking (the facility had cut its evening smoke time completely due to limited staff and covid concerns). Once my sister heard that it was her right to smoke, the patch idea was no longer on the table.

I have talked with my brother, he is working to find a facility in their area. We discussed that there are three of them that live in the area, whereas there is only me here.    

mommyandme (m&m)

Dear Saya, 

I’ve been following your situation. I actually meant going forward, should they move together. Of course moving to a new city, togetherness would minimize many difficulties for all of you.  

I hope for some good outcomes soon. 

jfkoc

I have not been following so do  not know the ins and outs. That said, I would ask my husband where he wants to go and pack up.

Let your brothers know where you will be and also let them know when you are going, when you will be back and that they are in charge.

Only so much hell can break loose in a short period of time so get out of Dodge and enjoy.

Day is so right. You can not make the ladies happy.