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Guilty_Daughter
Reply with quote  #1 
Hi - I've read some of the messages here and you sound like a very smart, compassionate group of people.  I hate to bother you but I was wondering if you would have any advice to help me get over the guilt of having my mother in a nursing home. 

My mother is 95, has dementia, macular degenaration, is severely hard of hearing and is on narcotic patches for pain from broken bones - hip, pelvis, compression fractures in her spine from osteoporosis. She walks with a walker but has difficulty. She's been in a nursing home for 4 years and is miserable.

She's never adjusted.  She has been miserable since the first day she moved in - moving to a nh was her choice by the way - it was in home care or a nursing home and she chose to go to the nh.

The place is wonderful - the nursing staff is great. They all like her.  I visit 3x/week - but I hate it - embarrassed to admit it, but it's a difficult visit - I just about have to scream for her to hear me (she doesn't think she needs hearing aids and refused to consider them), repeating the same thing over and over, can't have a conversation because she gets confused easily.

She has a phone - her lifeline - and calls me saying she wants to go home, asking why is she there, how much longer will she be there, asks if I have I talked to her mother (obviously dead), why doesn't her husband or other relatives visit her (dead also).  She'll call 6 times in a row with the same questions.  Gets mad at me when I tell her she's moved there and that is her home now. Then she cries - it gets to me.

Last night I finally didn't answer the phone.  She called at least 12 times - I feel terrible, but the calls are upsetting. I feel badly for her, but I can't get through to her, she doesn't believe me when I tell her she can't live alone because she's forgetful, and needs nursing care.  I feel so guilty that she's unhappy but there isn't anything else I can do.

Any suggestions on how to get over this guilt - I feel like I'm turning into a basket case.  Thank you.
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BC
Reply with quote  #2 

Hello Guilty Daughter, I am sorry to hear what you and your mother are going through. I know how brutal it is. My mother also had physical pain (arthritis, osteoporosis), macular degeneration, hearing loss, and some dementia from TIAs. She did stay in her home though, and I still felt guilty sometimes.

 

OK, think about this.. what exactly are you guilty of?  We can rule out being guilty for the pain, the blindness, the deafness, the confusion, the decision for being in NH.  I held myself accountable for not being braver, stronger, smarter, or in the words of a member who was here a few years ago,,,Guilty of NOT being Wonder Woman.  Yep, was that me?, guilty for not having super powers, guilty of not being God?

 

Sometimes, to let go of guilt, we just have to take stock of who we really are. (True, not so easy to take a dose of humble pie, but we are human). We feel guilty about not being more patient, for being afraid, for seeing our own future in their eyes, for hearing our own fears in their voices..and we are guilty of sometimes wanting to shut all of that out, because we are so uncomfortable with facing things that are beyond our control and of not being able to understand.  In fact, as hard as guilt is to bear, in cases like this, we often choose guilt because it is preferable to fear. 

 

Your mother's confusion sounds related to her narcotic pain control. You may also look into having her checked for UTIs.  How long ago did this type of phone call begin?  I am concerned that she has an infection of some type.

 

 Wanting to "go home" is a very common but distressing theme of the elderly.  Fact is that "home" doesn't exist in this world. It does no good to explain over and over to a person with dementia..you may as well spend your breath trying to blow up a balloon that has a teensy tiny hole in it. Forget hearing aids at this time, With the MD, of course she can't read your lips, but with my Mom, it helped a lot to be in physical contact with her..a hand on her arm..to lean close and speak in a tone firm but not overly loud. It also helps if you can shut out confusing, competing noise..close the door, put the TV on mute. 

 

When they can't remember or appreciate the truth, it is time for some therapeutic story telling..maybe tell her that the house is being remodeled, but you can't find the right contractor to update the plumbing.  She'll be able to go home as soon as it is done.  You are at the stage where kindness is more important than truth. This is not lying, it is different when they lose "reality".

 

There will be others offering better advice and information, but be patient..It is a holiday weekend and things can get sort of slow here.  I just wanted to welcome you and wish you a safe, happy and meaningful Memorial Day. 

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Guilty_Daughter
Reply with quote  #3 
Thanks for your reply BC.  Yes, I guess I'm guilty of not being wonder woman - of not being able to make her happy, healthy, young.  Sounds silly, but she looks to me to take care of her, trusts me to make the decisions for her, and in this case I feel like I've failed because I can't do what she wants.  But you're right - what is the alternative - nothing that a mere mortal can do.

She's been calling wanting to go home since she first moved to the nh.  Looking for long passed relatives started over a year ago. It happens mostly when she wakes up from a nap.  I talked to the nurses and we think she's dreaming and doesn't snap out of it right away and can't tell a dream from reality.

She has been tested for UTI - they thought that too, but it was negative. 
The pain medication is not optional.  We went for a year trying to figure out what would relieve her of the constant pain - oral meds, cortisone injections, epidurals, you name it - she had it.  The Dr. finally suggested the patches and they've been a miracle as far as relieving the pain.

I'm afraid to tell her too many stories because she may remember - I never know what she's going to remember and what she'll forget.  But I'll think of something. Good idea.

Thanks very much for your suggestions.  Gives me a lot to think about.  Thanks again. 
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BC
Reply with quote  #4 

There comes a time in all of this that really being on their side, means accepting that we will walk with them while we can..The best we can do is not hide from the fact that they are on the final stretch of their journey..All we can do is make sure that they are not alone until the life path reach that fork in the road where you cannot go yet.

 

It is also good to be aware, that you might stand there at the fork watching the place where they disappeared from view. I remember how hard it was to shake off the shock that I would now walk without her down the other path.  You are already grieving for her, but she is still here.. she shouldn't be "alone", but you already feel like you are alone.  Breathe and know, you aren't Wonder Woman.

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BC
Reply with quote  #5 

something that may help..when waking from a nap, she probably has low O2 levels.. that is very common with our elders.  It makes it so much harder to "wake up" and seperate the dream from her surroundings..ask if they will help her to do a few little breathing exercises if they are present when she wakes. It often helps lift the fog.

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Catt
Reply with quote  #6 
I agree. I think maybe your guilt is actually a feeling of helplessness. But that's just my 2 cents worth.
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Enuff-4me
Reply with quote  #7 

Hi Guilty Daughter and welcome to the board. It is really difficult to be everything to anyone, even a parent who we love and want to help and still try and keep our own space and balance. It is just so overwhelming and completely distracts us from the rest of our life and and destroys our well being and happiness and I'm so sorry that both you and your mother are having such a difficult time. I know too how guilty we can feel when we can not help our loved ones the way we would like but I agree with BC, grieving the loss of one of the most important people in our lives and watching them decline, is not easy for anyone involved. 

 

I can't even imagine hearing my phone ring all those times and still be able to function. I know my mother wanted a phone too when she went to the NH but it wasn't practical so she uses the one phone in the hall. It just doesn't seem to me that your mothers having access to a phone is contributing to anyones peace of mind, not even hers and possibly contributing to her agitation. If it is not possible to stop the calls at her end stopping them by putting your own phone on 'do not disturb' or ' silent' may help.

 

I have to appreciate your mother's decision to get herself in the NH in the first place because she probably knew that would be best for her and for your family. Like you say, the NH is not really the issue because she is getting good care so it seems that your mother could be having some issues with her memory or agitation and a medication review could maybe help. Sometimes, agitation can be a symptom that she needs an adjustment on her pain medication as she could be having 'break through pain' and in her confusion she might not be able to tell you any other way. I wonder too if the narcotic that is helping with her pain could have other side effects as everyone reacts differently to medications and the elderly are especially sensitive.

 

I have had my own issues with finding relief from pain, and I have also been through everything available and for me the best choice has been.... the less the better but I realize too that sometimes less is not an option. I hope you can find some relief from the guilt and know that you are doing everything that you can. I'm glad you found this board.

enuff

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Guilty_Daughter
Reply with quote  #8 
Thank you all for your suggestions and advice.

Yes, Catt - I think helplessness is contributing to my guilt feeling.   She was and still is a very stubborn, high strung, opinionated, independent person.  So I'm not surprised that I can't reason with her. And she doesn't believe anything I tell her if it's not what she wants to hear - after all I'm her daughter - she's the mother - she knows best.

Enuff - that's a good idea about muting our phone, but since I can't really do that I figured out that I can assign a silent ring tone to her on my cell phone and then forward my home phone to my cell at night.  I will receive other calls and she'll get the ans. machine - she never leaves a message. Sounds mean, but maybe this will discourage her from calling and I won't have to listen to the phone ringing for an hour.  I'm afraid to take the phone out of her room, even though I'm the only one who calls her or she makes calls to, it's her lifeline and she would get very upset if she didn't have it. 

BC it could be low O2 levels - she has emphysema.  Also claustrophobia so she refuses to use a breathing machine - she panics with the mask or even the small breathing tube.

Many, many issues with this little lady.  But thanks again for your advice and suggestions.  It helps just writing this out.


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Insanity
Reply with quote  #9 
BC and others, wonderful suggestions and insights. And yes, Guilty Daughter, it does help to write things out. Great idea about forwarding her calls to your cell phone with a silent ring tone. 

As to this yearning to go home, for many elders it is a desire to return not just to a house they've lived in recently, but to a time when they were younger, when family and friends were alive. 

As far as I know, it is impossible to go back in time. So we talk about the emotions instead. "You miss your sisters, don't you?" Then launch into stories about those wild and crazy women. 

If this doesn't satisfy her, I assume she is thinking on seeing them again once she crosses over. So we talk about seeing them again in the sweet by and by. Mom announces on no uncertain terms that she is not ready for that, but I assure her that they are waiting for her when she is ready.

We often skip conversations altogether and sing. Satisfies both our longings to be connected without the endlessly frustrating explanations of who is dead.


 

 
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Doris
Reply with quote  #10 

Wonderful insights. So helpful for me as I am on the edge of putting Dad in NH or AL.

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Guilty_Daughter
Reply with quote  #11 
Thank your all for your positive advice.  But I received this message  little while ago. I send a reply but it bounced.  Don't need more aggravation - thanks again and good bye.

private@aol.com via app2.websitetoolbox.com 
6:53 PM (1 hour ago)

to me
stop playing martyr and know it's best for h er and your health and aanity, if anyone crit. you tell them they can take care of her 24/7

This email has been sent from reader using a form at the URL below, which hides your email address from the email sender:
http://mikegamble.websitetoolbox.com/
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BC
Reply with quote  #12 

Mike Gamble, we need some attention here please. again, private messaging seems to be abused.

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Third Sister
Reply with quote  #13 

Guilty Daughter -

 

I'm sorry this person upset you, but please don't say goodbye to the rest of us.  I get email from that address on a regular basis, judgmental and totally unhelpful one-liners like the one you got. I posted about it in an earlier thread called "offline emails" but the person didn't stop even after I registered my objections publicly.  I now have him/her going directly to my spam folder.  Other group members said that they've stopped linking their posts to their email address, but I haven't taken that step yet.

 

Please don't judge the rest of us by the actions of one.  We're all here to support you and share whatever we've learned or experienced that may be helpful to you.  Your post and the thread that followed have helped me prepare in my own mind for how I might feel (and how my mom might feel) if it were necessary for her to go to a nh, so your contributions would be missed as well.  Please stick around and continue posting.

 

 

 

 

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BC
Reply with quote  #14 

I have sent Mike an e-mail.. some sniper has been doing this for a while now..I haven't left myself open for e-mails for a long time. 

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Guilty_daughter
Reply with quote  #15 
Thanks for your support Third Sister and BC Guess there's one one in every crowd as they day. Thanks again. I appreciate it.
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