Mom in memory care - and still miserable

[Sneezy]

My mom's dementia took a sudden turn for the worse a couple months ago.  It was only a matter of time before her independent senior living facility told me she could no longer live there, which they did in July.  As it turns out, mom's physical health also took a sudden downturn and she ended up in the hospital for almost a week with a bad infection.  She could no longer walk and is currently in a wheelchair.

So I lied to her.  I told her she was going to a rehab facility for a temporary stay.  But the truth is she is now in memory care and she is going to stay there.  Her family doctor, her neurologist, and the hospital doctor all agreed that this was the right move.

I feel so guilty.  I hate lying to her.  But I feel like there is no other option at the moment.  Mom is miserable and keeps wanting to go back to her apartment.  But her apartment is empty and is no longer hers.  I took her the clothes and personal items she needs and everything else has been donated.  Mom is a hoarder and she would be incredibly angry if she knew that most of her "treasures" are no longer around. 

I also have her phone and have been lying to her by saying that it needs to go back to the manufacturer to be fixed.  I know that when she is more lucid she would really like to be able to call friends and family.  But when she is hallucinating, she calls people at all hours of the night.  And when she is sundowning, she threatens to call the police.  And so I can't let her have her phone, at least not until she settles down.

I know this is all for the best.  She is in a wonderful facility - the same place my MIL lived before she passed.  She is receiving the care she needs, the staff is amazing, and the food is great.  But of course, mom is miserable.  When I visit, she has a long list of complaints.  So then I don't want to visit.  But then I feel like I have taken her life from her and locked her away.  And round and round the guilt train goes.

I'm ready to get my life back.  Hopefully, with time, the guilt will lesson and maybe, just maybe, my mom will be more content.  I guess I feel like it's ok to limit my visits for now and to keep her phone from her until she settles.  It's just that once again, I find myself grieving for the mom I wanted, and really resenting the mom I got.

[Rebel13]

Hi Sneezy,

I am so sorry! We went through this with a friend of ours, and it sounds like you have done exactly what needed to be done. It does feel terrible having to lie, bend the truth, keep things from the person. But we had to weigh that against the dangers of the person continuing to live on her own -- would she set her home on fire by leaving something cooking on the stove? Would she have a car accident and hurt herself and/or other people? Would she fall and be injured but too disoriented to get help? Fortunately, our friend's memory continued to decline, and so after a while she forgot that she used to live elsewhere, used to have a car, etc. and the complaints became more and more occasional and easier to deal with.  It sounds like your mom is in a really good situation for her, but doesn't have the context or the faculties to appreciate that. But you can let the knowledge give you comfort!

It's a terrible disease and there really are no good choices. I'm sure, if it were you, you would want someone to care for you the way you are caring for your mom. So please try to be as kind and compassionate as you can, with yourself! None of us is perfect, we are not gods, we do not control the world, and sometimes all we can do is pick the least bad thing and go on with it.

Wishing the best for you and your mom.

[notrightinthehead]

Hi Sneezy, it seems that your mom is well taken care of. Your big problem is the irrational guilt you feel. I would use this opportunity to thoroughly explore what the meaning of this guilt is. Where does it come from? Was is it telling you? What does your self talk tell you? Or are you projecting into other people's mind? I would try to mindfully dive deep into this feeling of guilt and find out, what it is trying to teach me. It's an opportunity to know yourself better.

I don't need to tell you that you are not responsible for how your mom feels, and sadly, in spite of all your efforts, you cannot make her happy. I wish you lots of strength!

[wisingup]

Hi Sneezy - This is a no-win situation.  For what it's worth, I agree with the others who have told you that you've made the right decision.  You are basically acting as the parent here, telling the child that they can't have/do something that will harm them or others.  It's the only call you can make.  I understand her being miserable & it's tragic.  I will face this soon with my own mom.  I urge you to try to reframe your guilt as sadness at a tragic situation, but you cannot fix this by giving mom what she wants.  Sending hugs & strength!

[Sneezy]

sometimes all we can do is pick the least bad thing and go on with it.

Yep, that's where we are right now.  I think we ended up with the best of the not-great options.  Of course, mom doesn't see it that way.  But I can't control how she thinks.

I would try to mindfully dive deep into this feeling of guilt and find out, what it is trying to teach me. It's an opportunity to know yourself better.

That is a good idea.  I'm not sure why I feel guilty about doing what needed to be done.  Sometimes life involves making tough choices and I need to accept that.

I urge you to try to reframe your guilt as sadness at a tragic situation, but you cannot fix this by giving mom what she wants.

Thank you, wisingup.  This is a tragic situation for my mom, and very scary and sad.  But she is extremely blessed that all of her children are on the same page (more or less) and working together to support her.  And she can afford a few years of memory care, which means she is way better off than most people.  I can't imagine how tough it would be if one of us kids had to take her into our home for care.  We are fortunate indeed!

[Tribe16]

I feel so guilty.  I hate lying to her.  But I feel like there is no other option at the moment.  Mom is miserable and keeps wanting to go back to her apartment.  But her apartment is empty and is no longer hers.  I took her the clothes and personal items she needs and everything else has been donated.  Mom is a hoarder and she would be incredibly angry if she knew that most of her "treasures" are no longer around. 

 

My heart goes out to you Sneezy. There is such a thing as "therapeutic lying". The doctor has probably told you this. I used to work at an adult day-care. We had to do this often. You don't do it to take away their rights, you do it so that they can be safer than they would be without it. It's not malicious, it's a safety measure, a quality of life measure. So please don't beat yourself up about this, K? Kicking the can down the road about her belongings is less traumatic than telling her it's all gone. Eventually she'll forget about it anyway.

My mother-in-law had dementia and was constantly making appointments for different doctors and was very secretive about it. Her primary care doctor called us to say "You've got to get her to sign the XYZ document that allows doctors to consult with her family. One time when I was taking her to her appointment, I fibbed and handed her the form and told her that the front desk said it had to be signed for insurance purposes. She didn't question it, and once it was signed, the doctor could tell us everything and it was a doozy. It wasn't long before she was placed in a geri-psych ward for two weeks to get her meds all sorted out and normalized.

You're doing it so they can have the best quality of life, whatever that means for the time they have left. Hugs.

[Sneezy]

There is such a thing as "therapeutic lying". The doctor has probably told you this. I used to work at an adult day-care. We had to do this often. You don't do it to take away their rights, you do it so that they can be safer than they would be without it. It's not malicious, it's a safety measure, a quality of life measure. So please don't beat yourself up about this, K? Kicking the can down the road about her belongings is less traumatic than telling her it's all gone. Eventually she'll forget about it anyway.

Thanks Tribe16 - I think you are right about the necessity of therapeutic lying. I don't like it, but the alternative is worse. My mom would be devastated if I told her she is going to be in memory care for the rest of her life.

The facility mom is at has a caregiver support meeting every month. I went this week and of the dozen people there, one man said his wife had voluntarily moved into memory care when her doctor told her she needed more care. Every other person admitted they had made up a story to get their loved one into memory care. And most of them used the same story I used, telling their loved one it was "temporary rehab." So I do feel better knowing that this is the way many people have to handle this.

I wish it was easier to visit my mom. The staff tells me she is doing well and is starting to engage in activities and is making friends. Maybe some day I will be able to enjoy visiting her, although that is probably unlikely. I have a feeling that even if mom settles in and is doing well, she will always have a long list of complaints for me. That's just how she rolls.

[Aingeal]

Be gentle with yourself.  You made the right decision. On a good day my narc mom functions at the level of a two year old - in an adults body! With a drivers license.  I would do exactly as you have done - it's an act of love to put their health and safety first.  You done good.

We're not doctors and nurses and can't be awake 24/7 to monitor them and keep them safe but this new facility can.  As for visits, when my late father was in the nursing home I visited when I could, when I was able.  He wasn't always nice to be truthful. But hey - we have to put our oxygen mask on first before we can help anyone else. 

We also have to give ourselves TLC and rest to recover from being emotionally abused from each and every interaction with these narcs.  It was DRAINING to visit narc dad sometimes - other visits went well, but I decided if I was up to it or not.  I decided to save my sanity and my health by limiting my time in those visits.  No regrets.  They'll complain if you visit/they'll complain if you don't ..... they'll complain period. About anything.

My dad was told by my mom that he was in a short term rehab situation after his stroke but the care he received there added a quality of life for all of us.  I wouldn't trust his life with anyone but trained professionals - they kept narc dad safe, healthy with a regular schedule , good diet and exercise to his ability -  the best care that could've possibly been provided and without worry of a bad fall (or worse) had it been possible to care for him at home. He was in long term care but accepted it and got along, made friends and did surprisingly well.  Okay, he loved that he had new people around/endless narc supply and could be extremely charming (except to his family.... We were treated like %@#&*).

Time to put yourself first and lots of self care. 

[Sneezy]

We're not doctors and nurses and can't be awake 24/7 to monitor them and keep them safe but this new facility can. 

Yes, I think this is key for me to remember - thank you for reminding me!  Mom is doing so much better in memory care.  She actually sounds pretty lucid most of the time.  Of course, the house she keeps wanting to go back to was sold 30 years ago, and my sister is not married to a guy named Max.  But if you didn't know these things, you'd think she was fine.  I do know, though.  And I know that when she was living in independent living, she wasn't showering or eating or taking her meds.  Her apartment was a mess - papers everywhere!  And so yes, I need to keep remembering that she is in the best place she can be right now.  Of course, I visited today and she is still miserable.  But maybe just a teensy bit less miserable.  I can always hold out hope, right  ?

[1footouttadefog]

Its not your job to make all the consequences of mental deterioration go away.  Its your job to keep them safe and clean and fed etc while they live through their illness to their end.  The docs and nurses are trained in minimizing these impacts and they have more tools than you do.

It feels like we should be able to fix it and take the negativity away for them but its just not so.

I hope you find peace with your decision. 

[Sneezy]

It's not your job to make all the consequences of mental deterioration go away.  It's your job to keep them safe and clean and fed etc while they live through their illness to their end.

This is very true. Dementia sucks, and I think it must be very scary at first, when the person realizes something isn't right. But I didn't cause this to happen to my mom. In fact, if she had listened to me and trusted me, she might have been able to live independently for at least a little while longer. But she would never admit that she was anything less than perfect. She refused to let me clean up her apartment and make it safer to live in, she wouldn't allow an aide to come in and check on her, and she lied about taking her medication. So in some sense, she is reaping what she has sown.

I am doing what I can do. I try to visit every week and take her the things she requests (chocolate, magazines, etc). But I also need to keep up my boundaries and protect my mental health. Mom still lashes out at me and complains non-stop. And so I have to limit the time I spend with her. Again, she is reaping what she has sown.

There's no fixing my mom. I don't know why she ended up the way she is. But she is who she is, and I can't fix her, and I can't allow her to drag me down into her black hole of despair. I just hope for both of our sakes, that this final deterioration doesn't last for too long. Because it's not pretty.

[Rebel13]

But she is who she is, and I can't fix her, and I can't allow her to drag me down into her black hole of despair. I just hope for both of our sakes, that this final deterioration doesn't last for too long. Because it's not pretty.

This is so true! We are starting down the dementia path with a second friend, and it's so, so awful to watch, regardless of how you feel about the person who's experiencing it. I hope you can keep your boundaries strong, do what you feel you must, and find some peace for yourself.

[moglow]

Sneezy Ive been following along and can only nod with a resigned "Yeah yeah" in a Rainman-type way. Because what else is there at this point. They truly don't see where they sowed these seeds decades ago, that it truly is mind over matter on so many levels. I look around at countless elders I know who are friendly, chipper, uncomplaining even against debilitating odds ... And here we are with ours. 

It's not even that this came into being with age and failing bodies, this is who they've been -by choice- for a great many years. Only now we're told over and over "but s/he's old and infirm and you need to ..." What? Suck it up while they continue target practice? Make excuses as if this isn't exactly what we've experienced with them all our lives?

I'm glad yours is in memory care and at least some of that burden is off you. Take a good deep breath, drop your tense shoulders back down a notch and carry on. We're here with you

[Sneezy]

It's not even that this came into being with age and failing bodies, this is who they've been -by choice- for a great many years.

Yes, this is the truth!  Many of my mom's behaviors are now attributed to dementia.  But honestly, they are the same behaviors she has had for as long as I can remember.  The same, but different.  In some ways, when I interact with her, I feel like her brain is now on auto-replay.  She has the same list of complaints, the same needs and wants, the same mean-spirited observations, etc.  But they don't seem as real to me anymore.  It's kind of like a recording of "mom's favorite hits from the past."  I'm just hoping some of the meanness fades with time, but who knows.

I'm glad yours is in memory care and at least some of that burden is off you. Take a good deep breath, drop your tense shoulders back down a notch and carry on. We're here with you

Me to!!!  I am so blessed/lucky/fortunate that mom ended up in memory care.  The timing and the way everything fell together was almost a miracle.  Mom is safe and cared for, and I can take a vacation or just ignore her phone calls, and know that she is fine.  And it's not lost on me, that mom did a fantastic job saving for her retirement.  I do give her full credit for this.  She has enough to last her for a few years in a nice memory care facility.  Which, considering how much her husband loved to gamble, is a credit to mom's strong will as far as handling her finances.  And so I am grateful to her for that. 

Thank you for your words of support!