Never knew it would be so hard

[lynne b]

Don't know if any of you read my post asking for prayers for my mom but things have not gotten any better.
Recap: She had back surgery on 8/14, she has not recovered mentally since then.
she was in a rehab center for her back from 8/19 to 9/9 they said they did as much for her as they thought she could comprehend so we needed to find another place for her to go to, they suggested a facitlity to straighten out her meds, she went there on 9/9 i walked her into the place, we visited her on 9/16 1 week after, this place is in another town, when we got there she could barely get out of her wheel chair, talked with the Dr & social worker they said it was due to meds she is on, they were ready to release her on 9/19 and wanted to know where we wanted her to go. They suggested a couple of places that i was not comfortable with, 1 was in another town where i would be in the same situation as now not being able to check on her and make sure things are being taken care of, the other 2 places are closer but not very good. I have since checked into one of them just to have her close but they dont have a bed avaliable, i am still having the social worker check with them to see what she can do. I have been to/called 3 other places that have refused her because of either behaviors or meds she is on that have made her in mobile, she had behaviors at the 1st place because of meds (reason for sending her to 2nd place) she has had 1 behavior since being at the 2nd place, we asked the Dr to change meds he refused, says they are working for her, i know if push comes to shove we can demand that he change it but he could also say he no longer will treat her and she has to leave now. I am now waiting for answers from 3 other facilities as to weather they can accept her because of her needs and have a 4th one to check into (thanks to Janet). This behavior is not my mom she would never hurt anyone, everyone always went to her for everything and she was always avaliable to help anyone in need and has many friends even from school that she still has contact with.
I am at the end of my rope here, this disease (damentia, alzhimer) is so wide spread but i am finding it hard to find the help for my mom that she needs, in my book she deserves the very best that i can find, mom is not the wealthiest person but she does have some money & ins. and i will do what i can to take care of her.
As this disease is becomeing so common please check out your facilities to see what they will accept, i know they have to protect all of their residents but mom cant be the only one with behaviors. Any suggestion would be greatly apperciated also prayers that i can find someplace for my mom to get better. Sorry this was so long but i have been on such a roller coaster for the past month and it is just me my husband & 2 daughters trying to figure this out.
Thanks for letting me ramble Lynne

[donna1990]

God bless you sweetheart. I am so sorry. Praying for you and your MOM.

[Lindsey]

I'm so sorry Lynne. My grandma's second husband has alzheimer's and is in a home now. I was living with them just before my grandma put him in there, and I had to lock my bedroom door at night because he would walk up to it and just start rattling the door, trying to get in. It was pretty scary. My grandma had a horrible time trying to talk him into going back to bed, and his happened almost every night. It has been really hard on her... he doesn't know who she is at all now. I don't have advice for you, but I just want to let you know you're not alone. It's a terrible disease :(

[DianaB]

When you talk with these places ask them what they recommend for your Mom. Sometimes they'll know of places that you didn't think of or they'll help with other programs that can help you figure this out. I'm so sorry that you're having to deal with this and I'm glad that your family is there for you. I'm keeping you in my prayers.

[gja1000]

I'm so sorry that you are going through this Lynn. I'm still not convinced that this is Alzheimer's - if she didn't have these symptoms before the surgery, then it just can't come on this quickly. It is possible that she had a stroke or something. I think the behaviors will get much better if/when she is off the current meds.

I know you live in a small town or rural area - so you may not have something like an Area Agency on Aging near you. I've enclosed the link to the Indiana Association for Area Agencies on Aging. http://www.iaaaa.org/ And this might tell you the one closest to you http://www.iaaaa.org/members/aaalist.asp This is where I would start if I were in your shoes. They are an advocacy agency for persons in your situation, at least the ones in Texas do that. Most agencies have case workers or social workers who can help families in your situation. They have lots of information, see if you can get some hellp there.

You need a facility that has a special unit for persons with dementia. Hopefully, there are some facilities in your area that have these types of units. Usually, a facility with a dementia unit can handle any type of dementia behaviors. The staff is specially trained to work with patients with difficult behaviors.

Is there a social work service in your area? Social workers are usually great resources for these kinds of issues. I'm so sorry, I wish I were there. I would try to help you. I have worked with persons with dementia and their families for the past 15 years.

Good luck, I know it is very difficult.

[lynne b]

Thank you all for your thoughts and prayers, they really mean alot.

DianaB: Most of the places I have talked with have been very helpful, they have made phone calls for me or let me sit in their office's and talk with other places, it seems that when i give the ok for the place where she is at now to send the information on mom so they can review it and see what her needs are they find that mom has more needs then they are able to handel or it is because she had behaviors and they can't risk the other residents maybe getting hurt. She has had 1 behavior since she has been at this facility when she first got there, so i need to find out what behaviors they are talking about and what this place is telling them. I am sure they have to look at everything from the very begining but surley they can see that the meds have help with the behaviors.

gja1000: We had an MRI done and it did not show any signs of a stroke, we were begining to see small signs of maybe damentia before the surgery but thought what we were seeing was due to the pain she was in from her back.
What are your thoughts of her seeing a nuroligist (sp)?
I am working with a social worker from the place she is at now, not sure if are helping or hindering the situation. Like i said above i know they have to give all the info that they have but as of tonight they say she has had no behaviors.
We do have an agency on ageing so if i dont find anything out tomorrow i might givr them a call and see if they can help me.
Thanks again for everything

[Janet]

I forgot about that agency Lynne. We have one here in Clinton County so I'm pretty sure Carroll will have one too. I wish you could find a place that would accept her and that it would be close enough for you to visit and keep tabs on her.

[gja1000]

Thank you all for your thoughts and prayers, they really mean alot.What are your thoughts of her seeing a nuroligist (sp)?
Thanks again for everything

Yes! I would definitely see a neurologist!!! There is something odd going on here and you need all the help you can get! I'd make the appointment.

[Marilyn]

Lynne, my heart goes out to you. My mother developed dimentia around the time my father passed away in 1995. She spent almost 5 years in a nursing home due to this disease. We tried to put her in assisted living, but they were building it at the time and she got worse too quickly and had to go into a nursing home. I felt so guilty for not being able to care for her at home, but I worked full time and was trying to raise two daughters (born in 85 and 87). I visited her almost every day. My daughters did their homework at the nursing home many times. I took her to lots of doctors trying to find one who could fix her. My work sufferred and my poor husband didn't have too many home cooked meals. I really don't remember now what we did for food in the evenings.

I hope they have better treatments and facilities available now. I know there are some in this area now specifically for people with Alzheimers/dimentia. When she needed the special help, there were none.

My prayers are with you. I had no other family to turn to and carried most of the burden and guilt myself. Typing this I am starting to cry for both you and the memory of my experience. Be sure and remember to not let this overwhelm you. She's not the only person in your family needing you. Caring for a parent with this disease can be consuming and overwhelming.

One of my greatest fears is developing the disease myself. If I get lost or confused about something, I worry that it may be beginning already. Take care, and PM me if you need to. I don't know that I have any good suggestions, but do have a shoulder you can lean on.