Medical, Legal and General Dementia Advice Needed

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

PhotoJenic
New Member


Date Joined Oct 2005
Total Posts : 5
   Posted 10/2/2005 7:04 PM (GMT -7)   
I need some major assistance. I will try to be brief, but there are some incredible dynamics at play.

My mother has removed my grandmother, who is showing signs of dementia, from the very comfortable assisted living residence that she was at to a non-profit, hole in the wall nursing home facility. I'm sure it could be worse, but this place is pretty bad.

My grandmother has stopped eating because she is still very much aware of her surroundings, very depressed, has nothing to do (no TV, 1 or 2 visitors once or twice a week, not allowed to leave the floor even with supervision, etc.), and in her own words "the food sucks."

My mother has made it clear that she has executorship and Grandma "will not be moved from the current facility."

I am a 32 year-old professional, engaged, with no children. I have had some dealings with Alzheimer and dementia patients, but honestly nothing more than a few hours of visits here and there. I am pretty bright and believe that I understand the task involved and the 24-7 needs of memory care patients. I completely understand the enormous task that I am asking to undertake, and my fiancé is 100% behind me.

My fiancé and I would like to bring my grandmother to live with us. I spoke with the head nurse at the current facility and she said that, other than the slight dementia and sometimes getting agitated at night, there is no reason she could not be in a home environment. Medically, she is doing very well for an 85-year old. Sometimes she loses her balance, but we have her use a walker, wheelchair or assistance at all times as to not take any chances. Our plan is that my fiancé will work part-time and we will hire a full-time nurse to be with her for four weekdays and Saturday (we have a business that is busiest on Saturdays).

Here are the issues:

- The assisted living place that she was at before is out of the question for numerous reasons.
- If I take her out, will I be able to find someplace if she later medically needs to be in a nursing home?
- They are in Virginia, we are in Tennessee. Given the multi-state situation, what do I need to know if this becomes a legal fight?
- Is taking her out of this facility, which is depressing but giving her the "best" medical treatment (which is very questionable given what I've seen), better? My house won't be depressing at all, but I may not be able to provide the best medical provisions (at least, that's what I fear).

For those who have been a similar situation (either legal battle or bringing a loved one needing memory care into a home environment), any advice, information, words of wisdom, thoughts.... ANYTHING... would be greatly appreciated.

Thank you so, so very much for reading all of this and any advice you might be able to extend.

bevhea
Regular Member


Date Joined Sep 2005
Total Posts : 240
   Posted 10/3/2005 6:13 AM (GMT -7)   
My sister kept my mother (alzhiemers) and father (parkinsons) at home. She had a nurse come in before she brought them to her house and set up a hospital type room, with all the equipment necessary to care for them. She also had ramps put in. They gave her power of attorney, so the first thing they did after that was use their money to buy a wheel chair lift van.

My sister and her husband have a small business, and both needed to work. They hired an older lady to stay with them during the day--again using mom and dad's money. The only real relief they got from caring for them over an 8 year period was when one brother showed up a couple times a year, so my sister and her husband could get away. Everyone else who came were burdens.

My sister and her husband were chastised by family members and friends, who didn't like the level of care she gave, but mom and dad were satisfied. When my mother died, one sister who hadn't shown up during the 4 years my mother was alive and in our sisters care, yelled foul. She claimed that my sister hadn't put mom in the hospital at the end, because she was busy starving mom to death. The rest of us knew better. Nevertheless, it's caused a lot of hurt and hard feelings.

I have a sister-in-law who had a stroke several years ago. She requires tube feeding and round the clock care. When she first came home, the whole family split about who was to be in charge, and while it was eventually settled, the fighting cost her a good part of her chance to get better and left a rift.

Estimates of her care in a convalescent center were a quarter million a year, because of the tube feeding. The family decided to keep her at home, where she wanted to be. According to court documents her round the clock care costs a little over $100,000 and none of that is to a health care professional. Other costs, for special food, medicine, doctors visits, etc bump that even higher. She is about out of money. The house will be going on the market soon and she will be placed in state facility.

One of her caregivers is her neice (40 years). The person who was in charge at the beginning left her doing 16 hour days. I walked into the house and heard her yelling and angry. When I got to the door of the room they were in she was just about to hit the patient. I sat down with the neice and explained that it wasn't her fault that the older, supposedly wiser family members should not have left that idiot in charge, and they should not have left it all up to her. She told them she needed help; I backed her up. No one ever was told that she lost her temper. The neice has been the best caregiver of a very large bunch since then.

I'm not trying to tell you the worst to change your mind. I truly admire my sister and the neice. They are examples of people at their best, doing things that would be too hard for most of us. You are talking about legal and other fights--believe me they come built into this sort of situation.

Legal: I'm not sure what your mother is saying by executorship. I think in most states it would be guardianship. Anyway what she does, should be overseen by a court--with annual accounting for funds. First you should talk to your mother and get permission to be the custodial guardian (your state may have a different name for it). Your mother would retain control of funds. If she refuses, you can write a letter to the court, stating (with the help of an attorney from the state of your grandmother's residence) that you want custodial guardianship and why. The court will then be required to have a hearing on that issue. You will have to prove that you have done your homework and are capable of handling it. It's not the time to be faint of heart.

All of the above takes a slight shift if your grandmother gave her power of attorney--depending on what type of power of attorney. If your mother hasn't got guardianship, you probably could file for it.

You need an attorney to tell you about crossing state lines--in fact I'd go to 3 to make sure I was getting good advice. It could effect your ability to place her in a home later, if you need to.

While you obviously are a loving person, ask yourself is this worth a potential rift, that may never heal, between you and your mother. A wise friend use to tell me, the smallest change is the best change. Is there some other way? Are you close enough to visit a lot? Could you hire a young person to go where she is and visit with her each day? Can you do something about the surroundings--bring things to make it more homey and pleasant?

I felt like you do, when my mother and aunt put my grandmother in a home. Gram was always a little crazy (for real). So she was much younger than your grandmother. She lived to 103 and spent one third of her life in that care center. Today, I'm darn glad I didn't insist on bringing her to live with me. I'm also very sorry that I lived to far to do anything for her.

bev

PhotoJenic
New Member


Date Joined Oct 2005
Total Posts : 5
   Posted 10/3/2005 10:47 AM (GMT -7)   
Bev,

Thank you so much for your response. Here are a few replies to your questions:

"what she does, should be overseen by a court" -- There is no court supervision or appointee overseeing my parent's actions or spending because this has been very straight-forward up to this point.

"First you should talk to your mother and get permission to be the custodial guardian" -- Hell will freeze over first before she will willingly give me executorship, guardian rights, etc.

"If she refuses, you can write a letter to the court" -- I'm going to try a few other things first, but if it has to come down to getting the courts involved then so be it.

"All of the above takes a slight shift if your grandmother gave her power of attorney--depending on what type of power of attorney" -- Yes, my grandmother gave her power of attorney, executorship and all that jazz.

"ask yourself is this worth a potential rift" -- I am through with my parents. There's a lot of water under the bridge and this is basically the last straw. My mother told me last night that "it's all downhill from here. We need to count our losses and move on with our lives." I look at this a little differently, I guess. I believe that my grandmother could easily have a good, happy life for the next ten years in the right environment. In the place she's in now, she will last maybe a year or two, and it will be very psychologically painful. She's already started starving herself and she's only been there for 2 weeks. So, is this worth a rift in the family? You betcha.

"Is there some other way?" -- I am trying to find an alternative nursing home in Virginia that might make everyone happy.

"Are you close enough to visit a lot?" -- I am eight hours away. I can visit once or twice a month.

"Could you hire a young person to go where she is and visit with her each day?" -- I would love to try this, but I have no way of making sure the person shows up and actually spends time with her. I could call her and ask, but she is not allowed to have a telephone. Has anyone else had luck with having a "sitter" come be with the person?

"Can you do something about the surroundings--bring things to make it more homey and pleasant?" -- She has some pictures up on a corkboard, but that's it. They do not allow many personal belongings. The personal belongings that she does have has been disappearing (mostly clothes).

PhotoJenic
New Member


Date Joined Oct 2005
Total Posts : 5
   Posted 10/3/2005 1:04 PM (GMT -7)   
Just spoke with the social worker and she says that she's going to try to persuade my parents to put Grandma into an assisted living facility that's specifically tailored to dementia patients. She said that the nurses and her could not understand why my parents were trying to put her in the Alzheimer's unit at this point. She said that it is completely unnecessary given her abilities, mental health and overall stability.

Anyway, hopefully the social worker will be able to change the situation. Keep your fingers crossed! :)

damwinston
Regular Member


Date Joined May 2005
Total Posts : 122
   Posted 10/3/2005 1:44 PM (GMT -7)   

My degree is in Gerontology and I might (not sure) but might be able to be of some assistance. I know of a company out of Tennessee that provides excellent care from everything I have ever seen. Feel free to drop me a line if I can help at all. My email is Also, depending on how big a fight you want you could always contest the guardianship for your grandmother - but yes that will cause a big fight with your mother. Anyway, drop me a line but please put HW in the subject or I will just delete it!! I hate spam.

lol.

good luck,

dammy

**I deleted your email addy and you can put it in your profile this way ONLY members can get it avoiding spammers and it is for your personal security**

Email me if you have any questions.........

LYN


Post Edited By Moderator (Howlyncat) : 4/1/2007 11:49:49 AM (GMT-6)


bevhea
Regular Member


Date Joined Sep 2005
Total Posts : 240
   Posted 10/3/2005 1:47 PM (GMT -7)   
1. Supervision and letter: Since the court isn't involved a lettr won't do the trick. You would have to go to court for a guardianship hearing. This is similar to my sister-in-law. No one had power of attorney, so the family fought over who was making good and bad decisions. We eventually settled on who should be guardian and we had two people, working together--jointly doing guardianship of her body and assets. Overall, that did work out, but not for the first year and a half. By the time all the dust was settled, my s-i-l had missed her window of opportunity to improve. Contact an attorney in the state where your grandmother lives NOW. You don't have to take action, but you need answers. Have all your questions ready. Ask about guardianship of the body and assets, crossing state lines, and how jurisdiction will work. Also ask what the court will want from you in the way of financial reporting requirements.

2. Hell freezing over: If your grandmother has extensive assets, that may motivate your mother. However, whether or not gram does, you mother might be trying to protect you from your youth and exhuberance. I would never say to my daughter, "we need to count our losses and move on with our lives," but I also would not want to see my daughter doing what you want to do--not for me or anyone.

3. The rift: You may have noticed that I did not say anything about visiting my parents when they were ill. The rift between my mother and me was so great that I didn't want to see her, and I didn't go to her funeral. By the time she died, my father was in very bad shape. I talked to him just once, and then went to his funeral. My family was through with me. I have been through worse than that and I'm old. Their feeling don't matter enough for me to wish I'd changed anything I did. Now my family is messing with my adult kids, trying to show them how "family" acts. So now my kids ask me why I was so heartless.

4. Alternative nursing home: Even if you do find a better nursing home, you have to consider that her reaction is in part missing the support group she had around her--the familar faces, the common experiences, her friends. A different home may or may not do the trick.

5. The home: The place where my grandmother stayed was like what you are describing, including the possessions getting stolen and no phone. Obviously they did something right since gram lived to 103.

6. Sitter: I have no personal experience or knowledge of this. I don't know how it would work out or if the home would allow it, but there are good people who care. Ask the home first. If they allow it, ask that friendly nurse, if she knows someone. There are also hospice volunteers, look them up. They are intended to work with the dying, but if you explain your fears, they may send someone to help her adapt and get her through this adjustment--or keep her going until you get things settled. They can also tell you if paid care services are available in the area. If you grew up in the area, look among your family and friends to see if they will look in on her. If you can't get one good one, get many. Have them keep her active and get her interacting with others, walk with her down halls to meet people. It sounds like a crisis--take action.

Always, keep in mind, "the smallest change is the best change." It is a valuable concept. And if you have to do a big change, then you have a track record of providing comfort and care.

bev

bevhea
Regular Member


Date Joined Sep 2005
Total Posts : 240
   Posted 10/3/2005 1:50 PM (GMT -7)   
My, my. You got some good assistance from the social worker while I was writing and great help was offered by others. This website is amazing.

bev

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 10/3/2005 3:03 PM (GMT -7)   
Photogenic,why wasyour Grandma taken out of AL in the first place?


SnowyLynne

Post Edited (SnowyLynne) : 10/4/2005 2:36:34 AM (GMT-6)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/4/2005 4:29 AM (GMT -7)   
Photogenic........I am praying that the Social Worker has been of assisstance to you with your Grandma> I worked in Homes for the Aged,Retirement homes and Nursing Homes .........there are good in all ...........I am also including the staff in on this ,...too often our loved ones are left for others to look after,much thought,close scrutiny about accrediation ect has to be done prior to just putting them away.I do not envy your position right now and I wish that I could wave a majical wand and have it all disappear but we both know that is not the case.Snowy has a great Q' and that is why was she taken out of Al in the first place? Please keep us posted on how things are going for you .......................God Bless ............Lyn..............I am in Canada so the Laws and Rules are not the same here...........sorry I am not able to be of more help to you in this time ..............Lyn 


 
Contribute today to support Healing Well Forums...Donate @
 
    I cannot keep your feet from stumbling..........I can only offer my hand that you might grasp it and not fall...........Lyn  
 
 
Moderator for Crohn's,Anxiety/ Panic and Alzheimers 
 
  Only after the last tree has been cut down...only after the last river has been poisoned...only after the last fish has been caught.....Only then will you find that money cannot be eaten.......                                 

Post Edited (LKE aka Lyn Kyle Emerick) : 10/4/2005 5:32:55 AM (GMT-6)


Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 10/4/2005 9:08 AM (GMT -7)   
This particular thread caught my eye and I hope that you all don't mind me joining in briefly...I must offer my complete admiration to you and your fiance for considering this move for your Grandma! 
My Grandma was diagnosed with AD in her late 70's.  Both of her children my Mom and her brother, took turns having her live with them.  There came a time, however, when the stress and strain of caring for someone that you love, yet could not be left alone at all took a bit of a toll and my family found a wonderful Retirement Home that catered to her in the beginning with her own room, and a 24 hr. nursing staff.  Then she was moved into their skilled care facility when the time came that she no longer knew where she was or who the relatives were visiting her - the nursing staff was wonderful.  My Mom washed her clothes for her even then and kept a close eye on her personal belongings.  She was still very well cared for...though the surroundings had changed considerably, with the new environment.
I know you still must make your own decision, personally, but I wanted to add a little here for you to know, that you are not alone!!
 
Hugs, Teri  tongue  
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


PhotoJenic
New Member


Date Joined Oct 2005
Total Posts : 5
   Posted 10/4/2005 4:01 PM (GMT -7)   
Many, MANY thanks to everyone for your thoughtful advice, prayers and assistance.

I have more good news to share. The social worker has convinced my parents into moving Grandma to the assisted living facility for dementia patients. (I have to remember to give the social worker a BIG HUG the next time I visit. Words cannot express my appreciation that someone out there cares and stood up for her, especially since I feel like my hands are tied on the matter.) So she will be out of the current situation and into a "home-style" environment by next week. Words cannot express the joy, you guys!

My parents are saying that her money will only allow her to live in this A.L. apartment for 2-1/2 years and that we can discuss what will happen at that point. As far as I'm concerned, the Alzheimer's unit that they had her in is not an option.

So, I'm trying to soak in the good news, but I'm still fearful of the future. I would continue to pursue court action, but I don't think I have a leg to stand on as long as she's in a decent environment. So, I guess I should just wait and see, right?

PhotoJenic
New Member


Date Joined Oct 2005
Total Posts : 5
   Posted 10/4/2005 4:11 PM (GMT -7)   
SnowyLynne:

To answer your question: The original facility that my grandmother was in has an assisted living unit, with very minimal nursing care, and then a full-blown, non-ambulatory Alzheimer's unit. Apparently, if you're somewhere in between, then they don't have any way to accommodate you, which I think is odd.

Anyway, Grandma was acting abnormally -- hallucinations, slurring, night wandering, paranoia, etc. -- which all came on rather suddenly. They (the facility and my parents) chaulked it up to Alzheimer's or severe dementia and required her to move.

The real reasons for the abnormal actions were that she was being given WAY too medicine (about 19 or 20 different prescriptions) and she had a urinary tract infection that was out of control, but no one could seem to diagnose it.

Now, she has had two strokes and suffers some issues due to this and probably some dementia (occasional aphasia, trouble writing, some balance issues, and no peripheral vision out of her left eye), but she does not have full-blown Alzheimer's. My mother was trying to claim that the Alzheimer's came on "all of a sudden," which anyone who knows anything knows this is impossible.

With a reduction of medicine and the urinary tract infection cured, she's pretty close to being her normal self. However, going back to the original assisted living facility is still not an option. She is beyond their capabilities, but that simply means she needs a little more nursing care.

Post Edited (PhotoJenic) : 10/4/2005 5:15:05 PM (GMT-6)


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 10/4/2005 4:22 PM (GMT -7)   
Onermedicating is a big problem in this country,& the elderly are the worst to suffer for it.We just have to be more diligent in seeing that doesn't happen................
SnowyLynne


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/5/2005 1:55 AM (GMT -7)   
Teri,.........your input is always welcome here and I would have to say at least 99% correct..........thanks for your kind words .....................God Bless ......Lyn
 
Contribute today to support Healing Well Forums...Donate @
 
    I cannot keep your feet from stumbling..........I can only offer my hand that you might grasp it and not fall...........Lyn  
 
 
Moderator for Crohn's,Anxiety/ Panic and Alzheimers 
 
  Only after the last tree has been cut down...only after the last river has been poisoned...only after the last fish has been caught.....Only then will you find that money cannot be eaten.......                                 


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/5/2005 1:58 AM (GMT -7)   
Photogenic.......I am so glad the Social Worker was able to do what you asked her to do ..........Just a thought but how about a real nice card she can display on her desk for others to see form you thanking her for helping you and your Grandma so much.........Keep us posted .........God Bless ..........Lyn
 
Contribute today to support Healing Well Forums...Donate @
 
    I cannot keep your feet from stumbling..........I can only offer my hand that you might grasp it and not fall...........Lyn  
 
 
Moderator for Crohn's,Anxiety/ Panic and Alzheimers 
 
  Only after the last tree has been cut down...only after the last river has been poisoned...only after the last fish has been caught.....Only then will you find that money cannot be eaten.......                                 


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 12/2/2005 3:22 AM (GMT -7)   
Photogenic......Haven't heard from you in quite some time please let us know how things are going .........God Bless ........Lyn
 
Contribute today to support Healing Well Forums...Donate @
 
    I cannot keep your feet from stumbling..........I can only offer my hand that you might grasp it and not fall...........Lyn  
 
 
 
 
                              


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/27/2007 10:49 AM (GMT -7)   
Bringing up in case some new members may be facing same or some simuliar problems

Hope it helps

LYN
    Contribute today to support Healing Well Forums...Donate @
 
 
 **When you Feel Anothers Pain ....You Are Humbled**
 
 
Co Mod... Crohns        
Co Mod..Anxiety /Panic 
Moderator ...Alzheimers
                             
 
                                  
                          
                                  


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 4/1/2007 10:52 AM (GMT -7)   
Wondering if you are still around Photogenic and how things are going with the legal issues

LYN
    Contribute today to support Healing Well Forums...Donate @
 
 
 **When you Feel Anothers Pain ....You Are Humbled**
 
 
Co Mod... Crohns        
Co Mod..Anxiety /Panic 
Moderator ...Alzheimers
                             
 
                                  
                          
                                  


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 4/5/2007 3:39 PM (GMT -7)   
Wishing all a Happy Easter if you do Easter.........
Take care and be safe

LYN
    Contribute today to support Healing Well Forums...Donate @
 
 
 **When you Feel Anothers Pain ....You Are Humbled**
 
 
Co Mod... Crohns        
Co Mod..Anxiety /Panic 
Moderator ...Alzheimers
                             
 
                                  
                          
                                  


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 4/9/2007 8:24 AM (GMT -7)   
Bringing to the top for other members to look at if interested
    Contribute today to support Healing Well Forums...Donate @
 
 
 **When you Feel Anothers Pain ....You Are Humbled**
 
 
Co Mod... Crohns        
Co Mod..Anxiety /Panic 
Moderator ...Alzheimers
                             
 
                                  
                          
                                  

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 3:10 PM (GMT -7)
There are a total of 2,734,927 posts in 301,259 threads.
View Active Threads


Who's Online
This forum has 151367 registered members. Please welcome our newest member, vtu15.
356 Guest(s), 17 Registered Member(s) are currently online.  Details
blueberrymuffin, Darkwolf, Gemlin, dismissed, Scaredy Cat, Almost a 10, mpost, getting by, wpack3, vtu15, BKelly, ks1905, joavila92, Ariel Smith, sam12, multifacetedme, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer