Does anyone have help for an adult caregiver? (Chicago, Media: apartment, lawyer)

[refade]

HI:

I am the caregiver of my 82 year old mother. She is primarily in a wheelchair and needs daily help with toileting, bathing and getting up and down and in and out of bed. She moved in with me in August and has since had three trips to the hospital. The first was because she fell geting into her wheelchair from her bed and broke her hip, she spent two weeks in the hospital and developed pneumonia, she then spent 6 weekd in rehab - but we took her out and back to my house because she became extremely depressed. While in the nursing home she develope C-diff a common bacterial infection basically from taking too many antibotics and a non sterile enviroment that caused a bacteria in the colon that causes extreme diareah. Her second visit was because she bottomed out at 27 with her diabetes. She spent 4 days in the hospital and it wasn't until the last day that she finally saw an endocrinologist who changed her insulin to Lantus. During her stay she was diagnosed with CHF and was put on lasix and another diaretic. and of course another antibiotic.
The third time was because the C-diff infection had redeveloped ( after the antibiotoc from the hospital visit #2) and she became severely dehydrated and more depressed. She was there for a week and a half. She saw a Behavioral specialist who changed her antidepressant to Cymbalta anlong with her regular dose od 100 mg Zoloft. She has been home now for about 2 weeks, and in my opinion doing great.
She's still pretty weak, and recieves OT and PT 2 to 3 times weekly. ( Although OT still needs to evaluate her ) a nurse visits twice a week. And starting in Feb. when I go back to work part time she will have a caregiver 5 days a week for 4 hours a day.
All is beginning to get into place, and I think these visits were basically an overhaul since she lived in Vegas for the last fifteen years and coming to my home, I knew very little about her mental and physical health. ( She lived with my sister and my sister passed away in August).
She doesn't do much, but she lights up every time she sees her new great grandchild who was born in December. She likes to watch TV and that's about it. Her spirits are up, and so is her diet, her diabetes has been under control and she has been taken off of most of her heart medications. I basically know what she needs when she needs it, I clean her up every morning, and get her out of bed - she'll even do her exercises for me. I think she's the best shes been mentally since coming here, but she still needs help physically.
My biggest problem is my brother. My brother is the executor of her estate and has contol over all her assets and he also has power of attorney over her medical care. He doesn't see her every day the way I do and he doesn't reap the expenses I do just from having her in my home - yet he insists on not helping financially other than supplementing my income during my FMLA leave with her money - although my mom is okay with helping to pay the expense she incurs, my brother does not even let my mom see her bank statements or write checks. He has control of it all - even her mail is forwarded to his house - so my mom can not even go through her own mail.
I'm at a lost for what to do. I have her debit card so I use it to purchase essentials like depends, ensure, gloves, prescriptions etc. These along cost over 300.00 per month. In the beginning I would pay them from my own account and hope that he would re-emburse me.
I have a call into a lawyer for some legal advice, as now he is talking about putting her in a home ( someplace neutral ) because he no longer wants to come see her at mine - or be bothered by needing to come over so I can have a break and go out with my husband or family. I can not even fatham my mother in a home - she hated the nursing rehab facility, and I think she would just deteriorate without the family and support she has here at my home.
I have to admit there is alot of life in my home.
My 15 year old daughter just had a baby, my other daughter is 16 and in and out all the time ( a Straight A student that challenges grandma to think everyday), a college student daughter who loves my mother to peices, my husband who helps in every capacity to take care of her ( even hygiene ). My husband has a motorcycle repair business and there are people here all the time - The house is booming with LIFE. We've given my mother her own room and make sure it is kept calm and quiet for her to relax and sleep. My mom has not become an intrusion in my life she has become a vital part to my life, and as long as I am able, and she is physically and mentally stable to care for - I would like to do it.
Does anyone have ideas of how I can get my brother to understand, or what I need to do so that he does not move her. I have talked to my mom and she does not want to go to an assisted living facility. I don't know what to do anymore. Thanks
Refade

[Avengerfire]

Find a layer right away. I am personally sickened by your brother's actions.

[Prairie]

The real issue is with your Mom, why did she make your brother the executor and power of attorney? Who made the decision that your Mom would live with you? Did your brother make the arrangements or did you take it upon yourself? I am not defending your brothers actions he has his own issues.

Since your brother has power of attorney for your Mom's medical treatment your brother should be making decisions in your Mom's best interest. Locating your Mom to assisted living might improve her quality of life because she will be expected to participate in activities (bingo, exercise class, craft, etc..). More importantly she will be in a safe and controlled environment and you all have access to your Mother as often as you desire.

Again, your issue is with your Mother's choice of executor and unfortunately you took it upon yourself to take on a financial burden. Before taking your Mom those issues should have been made very clear with your brother and instead it sounds like they were ambiguous. Now you risk the relationship with your brother by seeking legal advice. It is with great caution that your should proceed and understand that your attempts will further exhasberate the situation.

I applaud you for taking care of your Mom and speaking from personal experience I know it is not easy.

[refade]

My mother was not of a sound mind when she made my brother executor - my oldest sister who passed was the executor and it was always assumed that she would take care of things. My brother being second in line was the obvious choice - but honestly my mom just signed on the dotted line - I don't think she knew what she was doing at the time.
With no where else to go - my house was the obvious choice because it is a ranch style with no stairs and we had the room. When mom first came home she could do all the things I first mentioned - toileting, bathe and get herself in and out of bed by herself - she had done them for eight years with my sister - even though her mind was not sound - physically she could manage. My brother and I agreed that my house was the best place for her.
After the fall - she was no longer able to do those things, and that is what we have been trying to accomplish ever since. I took family medical leave when she was released from the nursing home in order to try to get her back to doing these things on her own again. My brother agreed to subsidize my salary while I was on leave, and also help with expenses at that time although no formal agreement was made in writing.
I have watched her in the nursing home and the hospital and they don't allow for her to try to do things on her own. I do. And she is doing these things now with very little assistance. I understand assisted living has things for her to do - so do we, and she does not want to participate. When we go out to family or dinner we take her even though she bauks - and she usually has a wonderful time. But in assisted living she will not have someone to come immediately when she needs to use the bathroom, and by the time they get there she'll have a mess. Assisted living will not watch that she gets the right nurishment, and help her to keep her blood sugar under control they will put her back on a sliding scale, and her foods will be chosen for her. I go for groceries around what she will eat and drink and need. They will put her back on a foley because they do not want to deal with her possible getting wet again - which made her incontinent, and they will put her back in diapers because depends are too difficult for them to deal with. Yes, my mom spends a lot of time in bed - but I make sure she gets up and does stuff even if it's folding towels - I don't thnk this will happen in assisted living. I think that after a while - just like in the nursing home - they'll forget about her and she just becomes another resident nothing special - well she's something special to me.
My mom is of sound mind now since all the changes in her meds. She can make changes to the executor and that's where I think a lawyer needs to step in - I don't think my brother is making decisions in her best interest but rather in what would be easier for him. He has told me that if she was in assisted living he'd be able to see her on his leisurem not mine ( like when I need him to stay with her so I can get out for a while).
My other concern is her dog. My mom's dog RJ is her life - she eat and sleeps withhim and without him, I think she'd die. At one point( and this sounds crazy) but I thought this dog could be the reincarnate of my father. He follows her everywhere and even knows when she's not feeling well. The last time her blood sugar dropped so dramatically - RJ came and got me and wouldn't leave ne alone squeeking and crying til I went to check on her. Unless he finds a place to take the dog too - my mom will be crushed, and so will the dog.

[Prairie]

refade, I understand perfectly the issues you are dealing with your Mom. My own Mother is in assisted living, sadly she has vascular dementia. The dementia is progressing, I call it the long good bye. So difficult to watch as she slips away mentally. My Dad had passed and she quickly went down hill, she could no longer stay in our childhood home. The assisted living gave her a safe place to be and also she had to be involved in activities. She is given three meals a day, laundry service and housekeeping for her one room. Meds are given to her and she is monitored at all times. She wears a button around her neck that she can push (and she has) when she needs immediate help.

I sincerely hope that you will consider assisted living. Remember if she really doesn't like it you can always take her back to your home. As far as leaving the pet, yes that is always difficult. My Mom had to give up her two cats (my older sister took them). Whenever Mom visits with my sister she always plays with them and that does bring her joy. If you take ownership of the dog you can always bring the pooch for visits and she can come to your house to play with the dog.

I take my Mom for weekends at my house and visit every Thursday, I was just there today. I took her out for lunch and returned her back to her apartment. When the weather is better I'll take her for a drive and we even go out for a movie matinee (she loves that!). Honestly, give the idea a chance and then you can make an informed decision. And yes, it can be expensive and that is also something your brother as executor will be faced with and perhaps he might then consider your offer.((refade))

[Avengerfire]

Again. Call some lawyers.

[refade]

Well according to my sister in law, my brother is reconsidering his move. Hopefully he will begin to understand mine. Prairie, thank you for your insight. And best wishes to you and your mother. I am beginning to see how each situation is so unique. When the time is right, I'm sure my mother will be in assisted living - but even according to my sister in law -this is not the right time. Living in a room all by herself - at this time is not the answer - having family around all the time is. Each day I see a new glow in her eyes as she becomes more and more comfortable in our home and with my daughters - her grand daughters - that she had not known until now. I want to keep her here as long as possible, and if that means I need to talk to a lawyer than so be it. She took care of me as a child - its my turn to take care of her. Even if that means my brother will never speak to me again, I know in my heart I'm doing the right thing, as I'm sure the day will come when she will need to be moved.

[Prairie]

refade - good luck to you, just remember that involving a lawyer can be cost prohibitive. It isn't always the best way to handle situations due to the expense. Personally, I seldom give advice to involve a lawyer and I come from a family of lawyers. ((refade))

[refade]

Thanks - then you Know my predicament. Is there someone other than a lawyer who can help - like a mediator of some sort?

[Prairie]

Mediation Council of Illinois - Chicago, Mediation Resources, Attorney, MCI Professionals