Hello;

My Mom has just been diagnosed with LBD. She has been more than difficult most of her life...14 Nursing Homes have refused to care for her.
The current Nursing Home is NOT caring for her and they just let her sit in her room in her soiled clothing and unbathed body.

Dr. Gill of East Hartford, Ct who specializes in this disease has recommended that my mother live at home as she most likely has less than 12 months before she does not know anyone. We suspect that she has had this LBD over 7 years now.

I found a caregiver (team of 2 people). The gal takes care of 24 Alzheimer's Nuns in their advanced state...her fiance would live in and cook along with taking care of the house and yard. She is going to nursing school 2 mornings a week and I would employ respite care and or the adult day care. She is a CNA and can give insulin injections which previously was the road-block to at home care. Her Mom who did excellent care for my mother at the first nursing home would also cover and the sister of this gal is the local visiting nurse.

My mother has had 3 hospital stays since I came to CT. Two were for insulin shock, one for a prolasped rectum repair. She had two falls in the nursing home and spilt her head open and was found in a pool of blood. I am the one who followed through on this care and insisted that she be taken to the hospital.



My sister is against my mother coming home. She has been against anything that I do. Now when my sister was caring for my mother she traveled all the time. There were 13 police visits to my mother's home.
The neighbors were concerned and called the police and the police called social services. My mother was found outside in the snow with no coat or shoes on, she was putting her meals on wheels containers in the neighbor's yard. My sister would not believe that she was doing this.

I came to CT from FLorida in early March. My sister was away skiing in Utah. To make matters more difficult my sister is very wealthy and will not spend money. She was on my mother's checking account since 1978. The condition of my mother's home was deplorable. There was no hot water, stove did not work, microwave did not work nor did the washer and clothes dryer work. I cleaned up two floods in the basement from the bathtub clogs draining into the cellar. I have done all the repairs, and now have my mother's medical insurance plans in order.

I found my mother in diabetic shock. My daughter was with me and we called 911. The condition my mother was in while my sister was caring for her could have resulted in an arrest for elder care abuse. She was starved, dehydrated, confused, dirty, in pain and begging for help...which is unlike my mother as she always felt no one could do anything correct unless she did it. Her sugar level was 613...if we left at that time she would not be here now.

We are having our second court hearing on July 20th at Probate Court. There were 5 Attorney's present at the last hearing. My mother is not a rich woman she is of modest means. My sister's Attorney does not charge her and I am getting HUGE legal bills from the letters that my sister has her Attorney write and charges she makes.

This next hearing will determine if the Judge of Probate will allow my mother to come back to her home for care until the Doctor feels that she requires 24/7 Skilled Nursing Home Care.

Now my sister has requested that she be Co-Conservator of Person with me. This will be heard at the July 20th hearing. If this happens nothing will get done for my Mother as my sister road blocks anything and everything I do. She refused to be Conservator of Person at the last hearing. This is why an Attorney of Assets was appointed...my sister objected to my being both Conservator of Person and Conservator of Assets.

I am trying to get QUALITY CARE- One on one care as recommended by the Doctors that treat my mother. I have been in CT going on 5 months now...away from my family handling all the above issues.

Does anyone reading this Post have any suggestions ? The Nursing home
cost will be $371 a day starting July22nd. My caregiver and respite care will be less than $1100.00 a week. I have a CPA that will do all the payroll, taxes and income tax returns for $320.00 for the year. My mother could stay at home for ten years before she would go on Title 19 in less than 2 years if she continues in the nursing home.

Care is upmost important and she is not getting this where she is now. The doctors feel that the CNA is a blessing that I have found. The Respite Care company want to hire this couple if I cannot get my mother home.

Angela I believe that our mothers are identical in behavior from reading your posts. I really belive that my mother's condition starting when I was 5 years old not just 7 years ago.

Thank you for reading this post.

Susan

PS: Where is the spell-check on this posting site?

Susan,

I'm sorry for what you’re facing. You are carrying a lot on your shoulders. I can't speak to the nursing home/in home care issue, I hope someone else can answer that question for you.

As far as some more info for you -- take a look at are the AlzOnline at http://alzonline.phhp.ufl.edu/en/topics/index.php - there is a lot there on specific caregiving topics. While the site is for Alz., you may find some useful information under wandering, Hospice, elder abuse and stress (on the caregiver).

Also, look at the Family Caregiver's Alliance at http://caregiver.org/caregiver/jsp/home.jsp You might be able to glean some info there. In particular, look at their FAQ at http://caregiver.org/caregiver/jsp/cont ... nodeid=797

Another place you may want to look for support is through an LBD email group on yahoo. More info can be found here http://www.lewybodydementia.org/sptgroups.php This is a very active group and someone there may have faced a similar situation.

I hope this helps.

Kjmcg

Hi Susan,
You've gotten alot done in these 5 months! Unfortunately, that means you've also uncovered more hurdles. As a hospice social worker (and a spouse care giver), I'm sorry to say your story is all too common. Tho I must admit, your sister is on the extreme end of the continuum.

Now, my opinion.....I always think home care is preferable to N.H. care for quality of life but, not always quality of care. Each siduation is unique.
I think my husband's confusion, sense of dignity, agitation, temper, etc... are much better managed by me. I have excellent private care givers with Harry so I can work. Yet, I can see the days ahead when his skin, "eliminations", nutrition, safety, baths etc...may be better managed by a N. H. I must be realistic and acknowledge that anything is possible. Back to your mom, there is a chance, she may be less challenging at home because of the 1:1 care and modified environmnet......better care giving.

Currently, educate yourself on the complaint process and determine if it has any "bite" to it or your mother needs moved out of the N.H.

Do you plan on returning to your family once the care giving is stable? In which case, is it 24 hr care these folks will provide? What happens when they have a family crisis and need to leave (death/accident). This can be a pretty fragile plan. After the hearing, if you get physical custody, why not move her back to FL with you? In any event, my heart goes out to you and your mother.

Sue and Harry Lewis in WV
Harry was Dx at age 60 with LBD. He requires FT care giving.


PS
After you get your mother's care straightened out, will you come help me ? . Sounds like your doing a remarkable job

Sisters can be sooo annoying , my sister fought me all the way when I made the decision to have mom admitted to a care facility. It took my being injured and unable to attend to moms needs for my sister to change her tune.

I have the unusual position of working in the facility that mom is living in and I knew just how bad things where getting for mom before she was admitted because we had to do all her care for her on the weekends as our wonderfull care aid needed her weekends to recover from the case load she had set her self up with. It was only after my sister had to look after mom every weekend for 3 weeks untill she realized that mom needed more care, but she still objected to having mom waitlisted for a care home as she felt that we could all pitch in and help care for mom. Of course when the opening came up she was on holidays in Florida and was really mad that I accepted the situation without her being in town. By the way both of my brothers felt that I had made the right decision and since I had Power of Attourney it was me that HAD to make the decision. But it was months before my sister finnaly started to accept that things where mom was were better than when she was on her own.

She has since appoligized for her behaviour and is really quite helpfull. I hope that your sister will come round and perhaps you will find that she was in denial as my sis was about how bad things really were.