RSS Feed Print
Introduction/Need Support
Tiger040
Posted: Thursday, January 12, 2012 7:46 PM
Joined: 12/28/2011
Posts: 2


Hi. My name is Beth. I am 27 years old and live with my mother, father, and grandmother. I am the secondary caretaker to my grandmother who has Alzheimer's. Since my parents have all the legal stuff under their name I just spend time with her (or try to) and stay at home with her when my parents can't.

 

My Grandma has been diagnosed with Alzheimer's for a year or so. She has been degrading what feels to me rapidly. I'm told that she's still considered too capable and with it to live in a facility or she either has too much or too little money. My mother is the primary caretaker. She doesn't work so she's kind of stuck with the role of that. There really isn't anyone else but us because my grandfather passed away a year or so ago. My mom never fully got the chance to mourn as my grandmother just broke down horribly. She basically had a mental breakdown as they were together for pretty much their whole lives. It was really bad.

 

It's all very hard on our family, but especially my mom and myself. We both suffer bipolar/depression and while I'm getting proper treatment etc, my mom is getting help, but I don't see it helping anything. She suffers with bipolar/depression as if she is not getting treatment though. Right now my mom and grandma are talking AGAIN about my grandma's place in the south where her and my grandfather lived first as snow birds and then full time about ten years or so ago. My parents stayed down there with her to set up a lot of shit and do whatever and the three of them came up here in the spring and permanetly moved my grandma up here. All she ever talks about is going back to her place and how the weather here is aweful (even on a bright sunny day with a temperature of 100 degrees and high humidity). She won't give it up about moving down there. To my knowledge they don't plan on taking her down there as they've been advised that it could make her worse.

 

It's really difficult to constantly be in the middle of their fights or explainations or whatever that leave everyone upset. She doesn't understand a lot and doesn't remember much. It's difficult to see my mom upset or crying and depressed all the time. I'm usually the one who has to sweep in essentially take care of her. I have crohn's disease as well and am in a flare in my rectum. My doctor's have concluded that the way things are in the house makes it unhealthy for me to be in for my mental and physical health. So, unknown to pretty much everyone but my dad, I got an appartment on campus (i am going back to finish getting my BA). Campus is only 20 minutes away. But, in the meantime, it's difficult for me. Lately, my grandma will just stand around and watch us do things. If I ask her if she wants to watch a movie with me or play a game she always says "No, not tonight." It breaks my heart that my only living grandparents doesn't want to spend time with me. My mother and I get so frustrated when she's just standing around or following us like a puppy. For me, the hardest things are not seeing my grandmother disappear slowly but the pain she causes my mother and myself with constant arguments, always telling us we're doing something wrong, not wanting to spend time with me, Not to mention the non stop circle of things with my grandma and in general. There's this cycle where my mom and grandma fight (or get frustrated) with each other, then my mom let's out that frustration on my father and I and it happens pretty regularly.

 

As I said, I'm moving out to stop this cycle, but I worry what my mom is going to do without me. How she's going to take care of my grandmother without me. Who's going to give her breaks and stuff? I just feel so guilty about moving out. It's just that part of me knows that I'm doing this now for my grandma, that ost likely I will end up taking care of my parents and not my brother and sister.


dj okay
Posted: Thursday, January 12, 2012 9:14 PM
Joined: 11/29/2011
Posts: 1840


Hi, Beth!

 

Welcome to our forum!  It sounds like you have a fairly complicated situation, especially with you and your mother both having medical/psychological issues on top of your grandmother's dementia.  I would suggest you call the 1-800-272-3900 helpline number and ask to speak with a counselor.  They will best be able to consult with you on your issues and concerns.

 

In the meantime, and for any time in the future, this forum is a great place to learn from the experiences of others.  But there is also a wealth of information on the alz.org main web site.  Read as much as you can about dementia.  It will serve you well.

 

As caregivers, we have to take care of ourselves or we won't be any good for our loved ones with dementia.   I know that Crohn's is a devastating disease and must be managed very carefully.  You need to be sure you are healthy enough to help your mother.  You may want to see if you could help in ways that don't cause you the stress that you cannot stand. 

 

I hope you come here often and do let us know how you're doing.


Marjk
Posted: Thursday, January 12, 2012 9:56 PM
Joined: 11/29/2011
Posts: 799


Welcome to the forum!

 

It is a tough situation that you and your family are in.  Even if you and your Mom weren't suffering with bipolar/depression, just dealing with this disease can cause people to be so overwhelmed and go into a depression (I speak from experience).

 

One of the most important things that we as caregivers MUST do is take care of ourselves.  Moving on campus will be good for you, and you will go see your mother and grandmother very often I am sure.

 

One of the big issues in dealing with someone who has AD is trying not to lose our patience with them.  There will be many people jumping in here soon with book recommendations to read.  I am just too pooped to think of any right now.

 

Another option might be daycare for your grandmother.  This will get her out of the house, stimulated and socialized, but also give your mother a much needed break!


rose_ro
Posted: Saturday, January 14, 2012 1:46 AM
Joined: 12/21/2011
Posts: 2431


I think if you call the 800 number, it might be helpful also!  And maybe use the chat feature?

 

I spent a lot of time with my grandmothers, too.  Things have advanced a lot since then.  I forget, is she on meds, is her doctor helping her?

 

There are places called ''continuing care'' facilities.   They existed back when my grandmothers were alive, but have improved even more.  I truly wish my one grandmother had been able to go to one.

 

In other words, she doesn't have to get ''really bad'' to live in a good care place that can have activities, events, beauty care, doctors, good food, safety..  if she's able to, they even take you to restaurants or food shopping....or...wherever!

 

I wish my grandmother had moved to one perhaps when she could have been in Independent Living, or definitely Assisted Living.  the next level, generally, is skilled nursing.

 

But nursing places are better than they used to be. 


rose_ro
Posted: Saturday, January 14, 2012 2:05 AM
Joined: 12/21/2011
Posts: 2431


This is a good - excellent - article that might help

 

http://www.nytimes.com/2011/01/01/health/01care.html?pagewanted=all


Gidget P
Posted: Saturday, January 14, 2012 8:38 AM
Joined: 12/15/2011
Posts: 62


Wanting to "go home" is very common, even when they ARE in their own home.  Rational explanantions will not help.  Grandma's ability think rationally or even to remember the reasons for the move is severly compromised.

 

If your mother stops trying to get her to understand and accept the move and instead agrees with Grandma that returning south is a great idea, the tension greatly decrease.  Mom can even talk with Grandma about when they move will take place (some time in the future, when your folks have "time off") and make lists of things to pack, etc.  This will validate Grandma's feelings and let her feel she is supported and has some control in a life that is rapidly spinning out of control.

 

Please take the time to read through the following paper and share it with your parents.  Of all the things I've read on dementia, this was most helpful to me in helping me to understand what was happening with my parents and how to communicate with them in a way that would accomplish waht needed ot be done with the least amount of discord.

 

It is only 26 pages lng but very thorough and written is easy to understand language.  I recommend it to all new caregivers.:

 

Understanding the Dementia Experience

 http://www.alzheimercambridge.on.ca/Understanding%20the%20Dementia%20Experience.pdf

 

Also please invite your mother to join us here.  Even if she does not want to post herself, just reading other's posts can be a source of tremendous support. 


EARchat
Posted: Saturday, January 14, 2012 8:55 AM
Joined: 12/17/2011
Posts: 108


Beth, just wanted to add my "Welcome" to these boards and I am so sorry for what brings you here ... as with all of us.  You certainly have your hands full .. come here often and read and be encouraged. ... More later ... Betty
rose_ro
Posted: Saturday, January 14, 2012 10:00 AM
Joined: 12/21/2011
Posts: 2431


I remember reading here that ''rational explanations'' wouldn't work.  I couldn't understand what they were talking about, because my mom always understood such stuff!


Except - the disease changes everything!  You start learning what can help, what doesn't help, and what can make things worse.

 

We are an army of folks dealing with this!


jfkoc
Posted: Saturday, January 14, 2012 11:43 AM
Joined: 12/4/2011
Posts: 17569


Another welcome!

It is a rough road but education is going to make it a lot easier.

 

My suggestions:

1. Come here often...ask question, get upset...anything...we do understand.

2. Read everything suggested. Every family has a "choreography". When one person changes it will elicit a change in everyone else.

3. For now do not waste time reasoning or argueing. You are going to have to learn acceptence and join your grandmother's world. We all have to do this.

4. Set up a definate schedule to relive yor mother!!! Her being able to count on this will be a huge help.

 

It will all make sense as you progress. Let us know how you are doing!!!


JAB
Posted: Saturday, January 14, 2012 12:09 PM
Joined: 11/30/2011
Posts: 740


Hi, Beth, welcome to the forum.

You and your mom need help, and plenty of it.

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 support 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 grandmother's care.  There are some tools and helpful articles on how to find the programs for which you are eligible.

If your grandmother or her late husband ever served in the armed forces, be sure to look into VA benefits such as Aid & Attendance.

In addition to the Ghent-Fuller article (which is great!!!), read Jolene Brackey's book, "Creating Moments of Joy".  It's wonderful -- full of very practical, simple advice on how to make our loved ones feel loved, happy, and safe: 
http://www.enhancedmoments.com/
Click on "Products" and scroll down.


One thing you might want to consider is hiring a geriatric care manager. 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. 

 


Angela65
Posted: Sunday, January 15, 2012 7:15 PM
Joined: 12/20/2011
Posts: 276


Dear Beth, Welcome im so glad to meet you, try not to feel guilty about moving out you have to keep yourself healthy both mentally and physically, just because you have your own place you can still visit. Set a routine thats healthy for you.Be it a cpl. hrs. a week or month and offer your time to sit with granma so mom can get a lil time away. But you cant keep being the buffer in this situation. And there are other options for granma besides living with your mom especially if its a toxic situation. Take Care of you Beth your young and have your whole life ahead of you. Good luck in school.