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Mom still begging to come home
NoPeeps
Posted: Monday, January 30, 2012 7:50 AM
Joined: 12/15/2011
Posts: 281


I don't know what to do about my Mom.  She was so difficult at home for a few years.  I had no life and was always on edge watching everything she did.  I moved in with her in her house so that she was not alone, but my life became very narrow because of this.

 

She has VaD and is a very strong personality.  She seems normal until people talk to her.  She is pretty capable of her own needs, but her delusions cause her to see a warped reality.  In her NH, she thinks that the people who work there are all related and sometimes complains that they don't come home and no one is watching the place.  She thinks she works there and never has any time off. 

 

When she was home, she did not recognize her home and was always looking to leave.  She saw me as three different personalities that she was afraid of.

Since being in the NH (five months), she always knows who I am, when I visit.  However, each visit she begs and cries to come home.  "I promise I will be fine, things are different, I am better, etc. etc. "  These visits are such a drain on me and my sister.  (we have no other family here)  I feel horrible when I leave her at the door with a tear stained sad face.

 

She does not understand and whenever they get a temporary aide, they always say things like "she looks like she could be at home with you".  That makes me feel like crud.  Then I second guess myself.  Today I am miserable.

I try and remind myself that she would never allow any hired caregivers so that I could get some relief.  I hardly slept at night because she did not know who I was and I was afraid.  Even now I told her that if she was home we would need help....her reply is still, "oh no, I am not having anyone in my house....I can take care of myself".  That was the problem.  She kept firing people I hired, etc.

 

I had a lot of stress related illness last year, and was so depressed.  One time I hurt myself and needed crutches and she took the crutches away from me because they did not belong to me (she was seeing me as one of my other personalities).  I had to hop around until I could find them. 

 

She is not as bad as others in her wing, but what else was I to do?  I feel like such a bad daughter.  She will be 87 next week and I am almost 64.  I am so tired of dealing with this in one way or another.   I am sorry, but I need to vent, so badly.  No one can understand this except for people who have gone through this, or are going through this.  I am so sad.

 

 


MLB61
Posted: Monday, January 30, 2012 7:54 AM
Joined: 12/2/2011
Posts: 726


NoPeeps -- You did what you had to do.  You didn't put her there, the disease did.  She is well cared for and safe.  Please do not feel bad or guilty.  You know what would happen if you took her home again.  She is sick and needs the care she is getting.  You need a rest and to take care of yourself.
King Boo
Posted: Monday, January 30, 2012 8:03 AM
Joined: 1/9/2012
Posts: 3091


Hello No Peeps- I am so sorry you are so sad.  This disease takes so much from our loved ones - but sometimes it takes most of all from the caregivers.  Given the behaviors you describe, I would make the third party observation that you were a wonderful person to care for your mom at home at all. . .and you are a very wise  person to recognize you could not do it any more.  I am sorry your pain is fueled by the ridiculous, MINDLESS comments of others.  There are a fair amount of people in my life this week that have said the most incredible, dumb, thoughtless, stress causing comments.

A while ago, the physician that cares for my Dad in AL made a comment to the effect of "most of these people are nursing home ready - why is your Dad here?"

I stupidly let that send me into a complete 6 month tailspin of researching every facility in sight and worrying myself almost into ulcers.  Somehow, I restored my sanity and perspective and realized that I should have listened to my gut.  I had chosen correctly for Dad (even though he too seems higher functioning at times than the other residents).  His care level was appropriate.

The new aides are exactly that.   NEW.  Perhaps with little knowledge about Mom's overall function, perhaps with limited knowledge about VaD.  If Mom is safe, and receiving good care, you have done well.  Rest.  Recover.  As hard as it is to see, you have the rest of your life to do.

Making our loved ones "happy" is often not a do-able goal, simply because of the disease.  A friend of mine with dementia in the family told me long ago to let go of that as a goal or I would loose my mind.  Wishing you the best from the East Coast.

 


Gidget P
Posted: Monday, January 30, 2012 8:26 AM
Joined: 12/15/2011
Posts: 62


"When she was home, she did not recognize her home "

So if you bring her back home, she will continue to ask to "go home."  The problem is not where her doy is at is at, but where her mind is at.  You can keep her safe and well-cared for.  You can not make her be happy.  That is not within your control.  "I'm sorry you feel that way" is about the best you can do.

 

  

"whenever they get a temporary aide, they always say things like "she looks like she could be at home with you".  

This is a completely inappropriate comment.  An aide has no business commenting on your choice of care facility for your mother.  She has no idea what your personal circumstances are and has no business questioning you.  She also seems to lack a basic understanding of dementia behaviors.  Do the aides at this facility receive any dementia training?  If not, they should - another comment for the adminstrator.


Mom's Baby
Posted: Monday, January 30, 2012 8:32 AM
Joined: 12/19/2011
Posts: 1146


NoPeeps, please don't feel bad...read back through your own post. With all the behaviors your mom exhibits, you really had no choice. My mom also appears pretty good to people who don't "get it." But then you sit and talk to her for a while, and her deficiencies become evident.

 

I've struggled with this issue too. Mom's been in memory care for about a month now, and there are people there who are much, much worse than her. But I have to plan for the future. And if I can't have her at home with me (not an option), I have to choose the next best thing. And that's what I've done. And it's what you have done as well.

 

Please don't beat yourself up! You're a good daughter.


Cheryle Gardiner
Posted: Monday, January 30, 2012 9:52 AM
Joined: 11/30/2011
Posts: 529


NoPeeps, this situation sounds almost exactly like what I went through with my husband! In my case, it was the chaplain who asked Jim why he was there and not at home. I was so upset and it bothered me for days.

Finally, I went to the administrator and had a heart-to-heart talk. I told her that I knew Jim appeared lucid much of the time, but that he was at risk for elopement, we have stairs in our house that he can't climb (both bathrooms are upstairs), and that I really didn't need to be second-guessed about the decision I had made with the support of his doctors and his son. She fully agreed, and did talk to the chaplain. I would suggest that you do the same and ask the Administrator if perhaps new aides should be instructed to NOT comment on the appropriateness of placement for ANYONE.

Jim's constant begging to come home was leaving me in tears most days. He was so angry with me for placing him that our visits were frequently unpleasant for both of us. His son suggested the following tactic: When he started berating me or begging to come home, I told him that my visits were because I love him and wanted to be with him and bring joy to him. Since I was making him so unhappy by being there, I was going to leave, but would be back tomorrow. I kissed him and got up to leave. He begged me not to go, and said he wouldn't do it again, so I sat back down. Of course, he did start again, so this time, I left.

The next time he started, I stood up to leave, and he said, No, don't leave. I won't say anything again. So I stayed for just a few more minutes, then left. I don't know if it was my actions that caused him to stop or just a change in the disease, but I really didn't have to deal with it much after that.

I also never told him that he could never come home, but that the care home had to get his diabetes under control, or that I needed to sell the house, or some other distant thing that had to be done first. He's been there 4-1/2 months now and almost never asks any more. That brings its own kind of sorrow, but it's not so stressful to me.

You don't say how often you're visiting your mom, but I was visiting daily and it was interfering with Jim's adjustment. I went away with my sister for a few days not too long after he was admitted, and when I returned, he had made a friend. Now I visit 5 days a week - never the same days - and he has begun participating in activities and making more friends.

It's hard, hard, hard! But you can do it, and mom will eventually adjust. You are keeping her safe and cared for, and that's most important.

Blessings to you.
mbarton
Posted: Monday, January 30, 2012 10:01 AM
Joined: 1/11/2012
Posts: 100


NoPeeps... I am so sorry your are dealing with this.  Would it help to say it will get better; somewhat anyway.

 

I was in your sames shoes about a month ago.  I tore myself up inside whenever I went to visit my mother.  She begged to go home and knew that she would be OK.  She is higher functioning than a lot of the people in her wing but when you talk to her she's way out there.  I tried to get the admins to let her live in the main AL area but they would not have it.... she was "exit-seeking" and they were afraid for her safety.  She now takes a low dose of Seroquel which seems to be helping.  She still asks about finding a nice little place where she can live, take a walk if she wants & go to the grocery.  We just tell her we are looking.... someday hopefully she will give up asking.

 

I hope your mother starts to deal with her situation... it's hardest on you, I know.

 

Mary


JAB
Posted: Monday, January 30, 2012 12:39 PM
Joined: 11/30/2011
Posts: 740


NoPeeps, you don't have to justify yourself to anyone.  And you don't need to second-guess your decision, either.  It's painfully clear that you did exactly what you needed to do that was best for you and for your mom.

Your mom is doing better because you found a good place for her. You should be proud of yourself.

Definitely talk to Admin about the careless, stupid, and yes, MINDLESS comments of the aides.  And ... suggest that it would be most helpful if the aides would distract your mom when you and your sister are ready to leave, so you don't have these tearful partings.  (Also ... time your visits so that you're ready to leave when it's time for your mom to eat, or there's an activity she enjoys.)
Jazzy1
Posted: Monday, January 30, 2012 1:21 PM
Joined: 12/16/2011
Posts: 33


You deserve a life don't you?  Would  your mom want you to stop living to care for her...ask yourself this question.  I did this prior to sending mom to ALF, and it got me to realize this was the best for her.  In the end, we pay big bucks for these places as that's why we get good care.....they have the experience to care of ALZ patients, not us.

 

If I had mom at my home, she wouldn't be doing as well as having been in her ALF for 2-1/2 years.  Mom is happy and well cared for and I can now enjoy a good, quality mother-daughter relationship without having to worry about her daily care.  We can enjoy each other....

 

Try not to be hard on yourself...go visit each day if you wish and spend time with your mom.  Know she's in a good place and well taken care of.  Now start to enjoy your life as well!!

 


NoPeeps
Posted: Monday, January 30, 2012 5:29 PM
Joined: 12/15/2011
Posts: 281


I want to thank you all for your thoughtful replies.  I felt so much better after reading them.  You all know what it is like to deal with this disease.  Sometimes I need to be reminded as to how things were at home, before placing her.  And...Jazzy1..you are SO RIGHT.... We spend a lot of money for these places to keep our Loved Ones safe.

 

Tonight the doctor from my Mom's NH called me about a medical problem that she has been having.  After discussing everything with her, she told me that she thought it was amazing that I was able to keep my Mom at home as long as I did.  I felt very much better to hear that also.  She said that Mom is actually doing well there, and not to worry.

 

Thanks again,

Sandy

 


Maureen138
Posted: Monday, January 30, 2012 5:46 PM
Joined: 12/26/2011
Posts: 5


It's ok to be sad.  I think we all go thru moments where the tears just won't stop.  Sometimes I have to lock myself in the bathroom when my mom thinks that I am her younger sister and has no clue who my father (her husband) is.  I can admit to being an emotional wreck from time to time and I never feel like I am doing enough to help out.
Marjk
Posted: Monday, January 30, 2012 8:26 PM
Joined: 11/29/2011
Posts: 799


There are many people in this world that shoot off their mouths without speaking.  They make us feel like idiots and we start to second guess ourselves.  You did what you HAD to do, end of story.  Taking care of your mother at home was not only sucking the life out of you (literally), but it probably wasn't safe for her either as it sounds like she really needs 24/7 care.  Oh wait, am I talking about me or you here, LOL.  Seriously though, many of us have been exactly where you are, and still are!  I had to sell my mother's home.  I knew she would never be able to go back home.  Various people made many comments, made me second guess myself, made me freak out, go into a depression, get sick, etc...  This disease is hard.  Placement is hard on us, so very hard.

 

My mother has been out of her home for 2 1/2 years now.  For the first six months or so she would beg me to take her home.  She put on a great act for me because she was fine the second I left, and always forgot that I was even there.  Now, she occasionally pulls the same stunt on me, but when I am there she will pay attention to me for five minutes and then want to sit with everyone else. They really can put on an act for us!

 

I can't tell you how many times I would say that my mother is "not as bad as everyone else".  Guess what?  She was and still is.  As a matter of fact, she's now pretty much in the middle, worse than some and better than others.

 

Yes, those visits can be very draining, VERY!!!!!!!!!!!  I had to step back a bit for awhile and not go as often.  Now I can go more, but my mother is so far from me.  You and your sister might need to give each other a little break, take turns having a couple of weeks off.  Remember, you can take a little time off from visiting in person and just do a lot of phone calling to check up on her.