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need someone to take control or help me
birdy
Posted: Thursday, January 12, 2012 8:12 AM
Joined: 12/15/2011
Posts: 181


I have talked to everyone people have come in but no one actually helps. they say do this do that. But my mom will not listen to me. Its all about money. Getting someone to come in is costly she can do some but not full time. Then when you talk to all these agencies etc they want all your money. If they take all the money how can my mom stay at home. She has bills and other things to pay. I cannot do this anymore myself. I want my mom to stay at home as she still is functional and knows me but her memory is gone and she has fear and slight delusions.She lives alone. I need someone to arrange things  or something. To be told call here call there do this do that is to overwhelming for me. Its all money and there is no help if you are not rich or extremely poor. No help for the middle class. One lady came in she was perfect but works full time. Also my mom puts a good act on in front of other people. I have zero help and zero relatives and her friends don't even talk to her or me. She still is friendly but her so called close friends do nothing not even a phone call and they live next door in a condo!!!It amazes me.
PatF
Posted: Thursday, January 12, 2012 9:51 AM
Joined: 12/15/2011
Posts: 701


Hi Birdy!  So sorry you are having to go through this.  I know exactly how you feel--OVERWHELMED!!  Finances are so difficult to manage and this disease is tough to plan for. 

 

There are some options that you might consider.  Is your Mom elderly?  Does she own her home?  Have you considered a reverse mortgage to help pay for caregiving?  Was she or your Father every in the military?  There are a few programs that might help get you some needed $$'s through the VA.  There are a few programs available through MediCaid but she has to qualify financially.

 

Searching out all these programs takes time and considerable energy.  I haven't had the strength to get my Mom's in order either.  We kind of go day to day at this point.

 

I hope someone else can post with better advice.  Good luck! 


skericheri
Posted: Thursday, January 12, 2012 10:03 AM
Joined: 12/10/2011
Posts: 287


Birdy---Your frustration at the difference between the way things are and the way they should for caregivers needing outside help to keep their loved one at home is evident.  Maybe I can help.

 

Adult day care might be a viable option.  Attendence would get your mother out of the house during a standard working day.  Fees are based on the number of days attended.  The one in this area was run by the Unitedf Way.  It was relatively inexpensive ($80 a week).  Some even supply transportation.  You might be able for find one in your area by calling your local Social Services agency,,or by calling the Alz. Assoc. help line.  The number is 800-272-3900.  If you make that call it would probably be a good idea to ask about other resources that might be available in your area.

 

If your mother or father was a veteran, Call your local veteran affairs office.  They might he able to refer you to services that are available in your community.  . Your mother might meet the qualifications for an Aid and Attendance pension.  Their financial guidelines are more generous than Medicaid.  Below are 2 links.  The first has general information and the second goes deeper.

 

http://www.veteranaid.org/ 

 

 http://www.vba.va.gov/bln/21/pension/vetpen.htm

 

 

  

I wouldn't count on it...but...You might be able to find some help by contacting your local churches,

 

Good luck & keep posting..

 

 

 

 

 


Cheryle Gardiner
Posted: Thursday, January 12, 2012 11:04 AM
Joined: 11/30/2011
Posts: 529


birdy, all of the financial things and care arrangements can certainly be overwhelming for anyone. You've come to the right place for help and ideas.

Many here have found help by hiring a Geriatric Care Manager. You do have to pay for their services, but I think it's money well-spent to help you choose the best arrangements for your mom.

It may be that she will be unable to stay in her home. I'm not clear if you live with her, but she probably shouldn't be alone, even at night. It's a hard decision, but many of us have had to put our LOs in facilities. If you find it necessary, we will be here to support you.

You might also call the AA 24/7 Helpline at 800-272-3900. I know - one more phone call! But they can direct you to a good place to start.

Please come back and let us know how you're doing.
birdy
Posted: Thursday, January 12, 2012 2:15 PM
Joined: 12/15/2011
Posts: 181


I feel she does not belong in a nursing home. I go to one to visit someone and its terrible in there. They will just drug her up. She is on nothing now but just needs someone to be with her esp evenings and some afternoons. She will not listen to me and gets more confused with me there so I feel a third party may help for now. My grandmother had alz way before it is what it is today. My mom provided round the clock care (it was cheaper then) and she was on no meds and was very passive. We watched her take her dying breath at her home after 15 years of care, it was such a peaceful ending with rainbows and a thunderstorm afterwards, Very weird but it is something I will never forget, so I was hoping I could do the same for my mom. its getting the right help with people you can trust and who know the disease not just someone whose looking for a job. Its a shame its so costly per hour. Wish we had true "good friends" to help out just a little. Also adult daycare would be difficult I cannot get her out of the house its very hard. She's very confused and likes the peacefulness of her home and her beloved cats. I have tried everything. Guess the best bet is to try to hire someone for a couple hours or more. But then in my mind I keep saying what about the other days. Then when someone comes for an interview she acts so nice and entertains them, people think nothing is wrong. Its her short term memory, reasoning and slight delusions, thinking she vacuums, bathes etc when she does not and you cannot convince her otherwise. She still a nice mom and functional and knows me and my phone number. But she is getting slowly worse. I have such anxiety and worry everyday !!
VKB
Posted: Thursday, January 12, 2012 2:30 PM
Joined: 12/4/2011
Posts: 3475


Birdy,

 

Look for an government agency in your area that is for the elderly.  Ours is called Office of the Aging.  Social workers and lawyers are usually available for free.  A social worker can sit down with you (I wouldn't suggest your mother be there) and discuss the options.  

 

Also call the Alzheimer's Association closest to you to find out if they can provide you some guidance.

 

If there is a senior center in your area, the director of it can direct you to any free services for seniors.  What you need is a social worker who knows what is available in your area and able to give you advice.

 

Usually pastor, priests, and rabbis also know the various agencies in your area that may be of help to you. 

 

Don't give up until you find someone who can give you the advice and information you need.

 

I'm saying a prayer for you.  I know what it is like to feel overwhelmed. God does guide and give us strength if we have faith and pray for His help.

 

When I was looking for someone to help me care for my parents, I prayerfully looked.  God did guide me to two lovely ladies.

 

 

God's Peace, Veronica


rose_ro
Posted: Thursday, January 12, 2012 3:27 PM
Joined: 12/21/2011
Posts: 2431


Why do you want her to stay at home?    People will never help you, at least  not in my world they didn't.  Instead, I had people try to insist on visiting, but not helping.  And they know how to help,  they just refused to do it.

 

I am happy for the time I spent with my mother, but I wish I had ''placed'' her earlier.  For your mother to be living alone and having delusions, it's ''wrong'' in my opinion.  She either needs t live someone, or move somwhere where they can care for her.    Whatever your age, if you don't have memory - you need to be where people can care for you.

 

It  is hard on people who have some assets, but not a ton...there are elder care lawyers out there who could help...

 

I spun my wheels, looking and hoping for help for my mom.  In terms of activities, etc.  If I had known she would fall and break something - and believe me, it could have been so much worse!  I would have pushed harder for her to move earlier...

 

You can only do so much.  Don't beat yourself up.  I focused a lot on '' if only people would help.'' Yes, and if wars would end, the world would be wonderful...we're not in heaven or utopia...people have the option of being rude, mean, insensitive, and uncaring.  I always used to think people would ''rise to the occasion.''  ha

 

 

 

 

 

 


rose_ro
Posted: Thursday, January 12, 2012 3:31 PM
Joined: 12/21/2011
Posts: 2431


birdy wrote:
I feel she does not belong in a nursing home. I go to one to visit someone and its terrible in there. They will just drug her up. She is on nothing now but just needs someone to be with her esp evenings and some afternoons. She will not listen to me and gets more confused with me there so I feel a third party may help for now. My grandmother had alz way before it is what it is today. My mom provided round the clock care (it was cheaper then) and she was on no meds and was very passive. We watched her take her dying breath at her home after 15 years of care, it was such a peaceful ending with rainbows and a thunderstorm afterwards, Very weird but it is something I will never forget, so I was hoping I could do the same for my mom. its getting the right help with people you can trust and who know the disease not just someone whose looking for a job. Its a shame its so costly per hour. Wish we had true "good friends" to help out just a little. Also adult daycare would be difficult I cannot get her out of the house its very hard. She's very confused and likes the peacefulness of her home and her beloved cats. I have tried everything. Guess the best bet is to try to hire someone for a couple hours or more. But then in my mind I keep saying what about the other days. Then when someone comes for an interview she acts so nice and entertains them, people think nothing is wrong. Its her short term memory, reasoning and slight delusions, thinking she vacuums, bathes etc when she does not and you cannot convince her otherwise. She still a nice mom and functional and knows me and my phone number. But she is getting slowly worse. I have such anxiety and worry everyday !!

         

    How will you feel if something bad happens to her, when no one is home?  my mom ''only'' fell in the kitchen, only needed two pins, and I still feel terrible about it.

 

my mom, too, liked the peacefulness here.  But today she went to several events and is doing a lot more than she ever would here.

 

I only looked at a few places last year. I should have gone to a few more. I know every area of the country can be differen, but I was too fearful of her being in the condition you mention above.

 

But I didn't think of what could happen to her here.

 

Your mom might improve in the right place!  my mom seems to be doing that!


rose_ro
Posted: Thursday, January 12, 2012 3:38 PM
Joined: 12/21/2011
Posts: 2431


My mom is not drugged up.  It's not a perfect place, but one time when I asked about a Tylenol, they wanted to make sure she needed it (she actually didn't, she had to move her bowels).  They don't want to give extra meds, and certainly not ones that drug you.

 

I understand what you're saying about not wanting to leave the house.  this house was so comforting to my mother, that she didn't want to go out much.  She never would have wanted to go to ''day care.'' She would have enjoyed it, but she liked being home more.

 

Good luck.  I know how hard it is.  I don't mean to not exhibit sympathy.  But the world can be cruel.  I still can't believe how unhelpful my family really is and was.  And will be.

 

But as I talked to the wife of a resident today - no one else is ever going to take the control.  First, do you really want them to?  The decisions are on you, but you might not like the decisions someone else makes.

 

I was a very positive thinker, always thinking something could help her ''stay out'' of this kind of care.  Glad I know I tried ''everything'' but - home is not always safe.  Just because she feels safe, doesn't mean she is. 

 

I also believe that staying home, being alone, can be traumatizing - and they don't always recover from that feeling.

 

 


rdl02657
Posted: Thursday, January 12, 2012 3:48 PM
Joined: 12/31/2011
Posts: 13


Birdy,, if you and your family move in with her, and she can not be left alone. Outside has to be involved ,   maybe day care.    As her caretaker you have to decide and make sure it happens.   It gets worse it will not get better, sorry but this rollercoaster is long.   Take charge because she can't    with the help of us and God you can do this  roger/out

 


JAB
Posted: Thursday, January 12, 2012 3:54 PM
Joined: 11/30/2011
Posts: 740


Hi, birdy. 

 

Talk with your local chapter of the Alz Assoc:
http://www.alz.org/apps/findus.asp

and your Area Agency on Aging:
http://www.aoa.gov/AoARoot/AoA_Programs/OAA/How_To_Find/Agencies/find_agencies.aspx

to find out what programs and services are available where you live.

There may be a number of financial assistance programs you could tap into, to help pay for your loved one's care.  There are some tools and helpful articles on how to find the programs for which you are eligible.

 

The suggestion of hiring a geriatric care manager is a good one. These professionals are experienced at evaluating the specific situation and personalities involved, recommending the types of in-home support or assisted living that would be most appropriate, and helping you locate the best providers.

GCMs sometimes specialize (health care, vs financial issues, vs legal issues) so be sure to find one who can deal with the specific issues you are facing.

Your local chapter of the Alz Assoc probably also has a list of geriatric care managers in your area and/or can give you ideas on how to find a qualified social worker to help you.  Your Area Agency on Aging may even provide the services of a social worker who is qualified to act as a geriatric care manager, depending on your local agency policy.

 

This post has been edited by the ALZConnected Moderator on February 9th, 2012. 

 


rose_ro
Posted: Thursday, January 12, 2012 3:57 PM
Joined: 12/21/2011
Posts: 2431


 

 

 

 

would any of this info help?


rose_ro
Posted: Thursday, January 12, 2012 3:58 PM
Joined: 12/21/2011
Posts: 2431


I'll be happy when i can edit in a real ways again

 

http://www.mchughandmacri.com/Elder-Law-Estate-Planning/Top-10-Medicaid-Mistakes.shtml

 

I think it has very good indo, to begin with. 


skericheri
Posted: Thursday, January 12, 2012 4:14 PM
Joined: 12/10/2011
Posts: 287


Birdie--Nursing homes of today are not as had as the ones available to your grandmother.  Charlie was definitely not sedated...considering the time constraints of the staff he was always well cared for. 

 

I hope that you can find the help you need for your grandmother.


birdy
Posted: Thursday, January 12, 2012 4:20 PM
Joined: 12/15/2011
Posts: 181


Its my mother not my grandmother she had care at home it worked out well. I think rose o does not realize that my mother gets extremely upset if told or suggested to do things. She is frail and weak and to drag her all over the place is not appropriate. See this is where people just do not understand. I know my mom and I know what makes her happy I just cannot do it all. I respect her and will not just throw her down the drain. She needs in home help so she is not alone all the time besides having me there. She is petrified of a nursing home and I do not blame her I see it every week. I find a way thanks to you all.


skericheri
Posted: Thursday, January 12, 2012 5:04 PM
Joined: 12/10/2011
Posts: 287


Forgive my mistake.  I meshed your nursing home visit experiences with what you said about your grandmother's death peaceful passing.

 

Death visited Charlie on 10/15 during a brief stay in a local hospice house.  Like your grandmother's, it was as beautiful as a movie script. 

 

Your mother does not sound as if she is currently nursing home material...but you sound tired.  I hope you find the help that is needed.  If you don't, find out if there are any adult foster care homes in your area.  They usually have about 6 residents...provide a family type atmosphere...usually .charge considerably less than a nursing..home...and...some even accept Medicare.

 

 

 

 


VKB
Posted: Monday, January 16, 2012 9:21 AM
Joined: 12/4/2011
Posts: 3475


Birdy,

 

Sometimes local community colleges have nursing programs.  You might want to call a nursing program in your area to see if one of the students needs a part time job.

 

I put an ad in a local paper and prayed.  That is how I found my two wonderful assistants.

 

I strongly suggest you ask the people you interview to give you character references or references from past jobs.  Experience is not necessary.  What is necessary if someone with a heart and honest.

 

Also be sure to put a list of their duties on paper, and have them sign it.  If they begin to get a bit lazy, you have the list.  Then it is up to them whether they want to stay on, but really think about it before you say something.  If the person is good for your mother, you may want to overlook the small stuff.

 

 Also, remember that no one is perfect.  No one will do the job just like you do.  I learned it is better to overlook imperfection as long as the person is good to your mother.  Ex:  Our assistant was hired to do housework and do personal care for my parents.  As my parents go more dependent, she said she couldn't keep up with the housework any more.  I was angry at first, but in time I realized what was important:  she was good to both my parents and made sure they were safe.

 

It is best to be very kind and patient with your assistant. She will be more willing to do nice things for you and your mother.

 

Wishing you the best finding help.  Oh, interview them out of your mother's presence.  Meet at a diner if necessary. 

 

God's Peace