Self Guilt

strugglebus

My 89 year old mother was first diagnosed with mild dementia in August of 2019. She was living on her own and driving to a market 1/2 mile away. I had been taking her to her doctor appointments for about a year. We noticed some forgetfuness, but brushed it off to her age. I moved in with her at the start of the pandemic (for 2 months) because she didn't understand why she counldn't go to the store every day. She was still able to take care of herself and fix a meal. I noticed she was having more difficulty remembering things and keeping track of items. Ahe kept telling me she wanted to move some place where she could get her meals and have someone to talk to. She mentioned a couple of places by name. Unfortunately, visiting them at that time was not an option. 

 She saw the neurologist 2 months ago and was reassessed. She scored much lower. She was becoming paranoid and thinking everyone was taking things from her or taking advantage of her. She was calling me or neighbors in the middle of the night to be taken to the hospital. Once at the hospital, they would never find anything wrong. They would chalk it up to anxiety. (I will also say that by the time she gets the the hospital, she is usually completely making sense.) She was given meds to anxiety and had been on something already for mild depression. 

She is no longer taking her medicine on a regular basis and has thrown them all way twice in the last couple of months. (I have been filling her weekly medicine dispenser for a couple of years, bur never had the need to take the bottles out of her cabinet. ) She is also no longer fixing herself any meals, just eating something handy. I have been told by several doctors that she probably needs more assistance. She doesn't want anyone in her home, except when she wants it. She is refusing to go into assisted living. I have a letter from the doctor stating her POA needs to be making her medical and financial decisions. I am her POA and only caregiver. I tried discussing it with her when I got the letter, but things became worse then any other conversation. It was so bad that my husband called an elder attorney and we are filing for emergency guardianship.  

To make matters worse, the assisted living/memory care facility that we really want has an opening next week and I have to decide by Monday.  It may be another 4-6 months before anything is available. I am an emotional mess and am riddled with guilt. I know I am making the right choice for her, but she may hate me for several months and am not sure I am strong enough emotionally to deal with that. I need reassurance from someone who has been through this.  Sorry for rambling. 

M1

Strugglebus, i haven't dealt with placement yet, so this is gratuitous in some regards:  do it.  It's clear she needs it.  There's no reasoning with her, so probably best not to even try.  But you are right--it's only going to get worse from here.  She may thrive once settled in.

Quilting brings calm

My parents are in assisted living.  Do it.  She probably thinks they are like old nursing homes( they aren’t).  Tell her the truth and some fibs. 

Your home isn’t safe right now - true

Work needs done on your home and this is a pleasant place to stay while it’s done ( fib?)

I could get in trouble letting you stay in your home while it’s not safe 

I need to go out of town and this place has someone to assist you 24/7

For how long?  Until the doctor says it’s safe for you to go home 

In terms of her getting mad at you? She will still need your help for lots of things even though she will be in assisted living.  Direct all mail to your home.  Go thru it before  you deliver it. 

There will still be grocery and other supply runs.  Doctor visits you want to attend, etc,  she will get over being mad at you. She may find friends there quickly too. 

Stuck in the middle

You won't like your mother's anger.  You won't like what happens next if you don't help her, either.  Since you can't win, you just pull up your socks and do what's best for her.  This is similar to taking the car keys from her if she was overserved at the Boom-Boom Room.  She can't think rationally, so you have to do it for her.  

I placed my mother when she was 90.  She spent three weeks in ICU before going to the NH where her blood pressure could be closely monitored, so it was do it or bury her in a week, and that made the decision real easy.  Your mother needs your help just as much as my mother needed mine.  It's not quite so obvious, but is still true.  

Since you have to do it, I recommend you do it now.  Procrastinating on unpleasant tasks has never given me anything but grief.

Lor2014

Do it. First, you have to take care of YOU first. Many caregivers die before the patient because of the stress. My mother started having TIAs when my dad was endured chemo and later died. That was the start of HER dementia (vascular). You need to make sure that you employ self care.

Your guilt is about the relationship you previously had with your mother. That relationship is gone, and you are still grieving that relationship. You are now her caregiver and you know what is best. Think of her as a teenager that will say and do whatever she has to to get her way.

I would move her in, and then stay away for a few weeks to let here get used to it. 

Amymv

Hi Strugglebus,

I am so very sorry.  I can hear how this is all so difficult for you and I have been there. In my humble opinion, I think you should get your mom into an AL facility while they have an opening.  My mom fought it and we had to go to court to get legal guardianship.  It was a very difficult time.

You WILL get through this. I told myself over and over it's was for my mom's safety.  Once she adjusted, she really loved living there!  At first she refused to leave her unit, but staff found ways to draw her out.  There are lots of fun activities and the residents really form deep friendships and look after one another. 

Please come back and let us know how you are doing. Be prepared for her to be angry, but your mother knows of your love for her and she will adjust.  She will look forward to your visits! 

I will be honest and say I was still very involved with her care and at times the staff couldn't always help, but we worked on solutions.  Of course, I was happy to do all I could for mom, but with three children at home and one of them disabled, it gave me peace of mind to know she was safe and a nurse was always on site.

Jerome Likes Pie

Hi Strugglebus,

This has to be very difficult, and I am probably right behind you in timing.  

Maybe view this opening as fortuitous rather than making matters worse.  If there were no opening, that would seem a lot worse given your situation.  You can do it.

Pie

strugglebus

Let me start by thanking everyone for the reassurance I have been seeking. I went this morning and signed all the paperwork to place my mom in assisted living next Monday. I did it as her POA, but am still seeking guardianship. This weekend she was not leaving her home despite middle of the night phone calls because her dryer wasn't working and she was overwhelmed by everything. This morning she told me she would probably have to move at some point. I did not tell her I was on my way to sign the paperwork. This evening she is not leaving. My brain is telling me this is the proper course of action for her, but my heart is breaking. I am blessed to have a very supportive husband that steps in when I am at wits end. My heart goes out for all those impacted by this horrible disease, both the individuals and their caregivers. We will see what next week brings.

Emily 123

This is great news--I'm glad you were able to get that room!

Words of support--don't second guess yourself, and give your mom time to settle in. The move will be disorienting and she may have a slump as she adjusts. 

My mom wanted a place of her own which made moving her to a dementia focused AL easier. What she really wanted was to move back to a CCRC she had picked out for herself when she was 75, before she met a new partner and left the state with him.  At 91, and with all her old friends dispersed, that was off the table. She's late stage 4 and admits her memory isn't what it used to be.  I visited her once a week, and called every day.  She was pretty disoriented initially.  It took her about 6 weeks to settle in (I'm guessing that's when her surroundings started to look familiar), and about 3 months to hit her stride with the routines. I've seen 3-6 months noted as an adjustment period on here. As they say, routines are what's needed, but without a working short term memory it's going to take a while to develop one.

  I moved a lot of her familiar knick-knack things, and I moved some familiar things I knew she wouldn't use, like kitchen utensils & her coffee maker, just to keep up the pretense that she could still cook--they are untouched.  What I shouldn't have done was move ALL her clothes, but I was trying to keep it very much in the light of moving to an apartment, as Mom has asognosia and would have fought anything like dementia/MC.  

More clothing choices are not better and she's doing basically pants/tee/cardigan every day.  If your mom has something she uses as part of a daily routine try to move it--for my mom it was one of those white plastic laundry hampers for her dirty laundry, and once I brought that over then laundry started going into it. She wouldn't use the hamper from my house that I put in her closet.

My mom says she's bored, but I see her on the Facebook page participating in things, she just doesn't remember.  When pressed to do more things she actually declines to do them.  

So, don't beat yourself up because your mom is superimposing her memory of how she used to be able to live onto what she can do now.  I think my mom is finding the routine soothing, and since a lot of the burden of multi-step planning is removed she seems to be able to pick some things back up, like a shower schedule.

Good luck with your move,

strugglebus

Well I did it and moved my mom into AL yesterday afternoon. I took her shopping and to lunch while my husband and son moved her belongings. She was upset but went into the building because her cat was there. While upset at first, she eventually calmed down and thanked us for getting her such a nice place. Within 30 minutes she was going to call a lawyer, the police, and a cab to take her home. Her level of confusion was the worst I have ever seen. We left after several hours hoping for the best. Spoke with staff this morning and she was up all night trying to get out. She has never wandered before, so I was very surprised by this. She was agitated most of the morning and refused to go to lunch, but eventually did. I called her after lunch and she told me she hadn't left the room but was waiting on a ride to get her car and leave town. I knew there was no point in reasoning with her. I knew there would be an adjustment period that could last weeks to months, but in my heart I was hoping for the perfect scenario.  I am struggling after 1 day. I am not sure how everyone out there does it for months and years. I admire your patience and strength.

Jerome Likes Pie

Strugglebus,

Great job!  You did it!  Your mother sounds a lot like mine and I am probably several months behind you, give or take, as we are putting the deposit down this week.  What you did has to be one of the hardest things to do in this challenging journey.  I am not looking forward to it one bit, but thankful that people like you are showing us how to do it.  You made a good decision in caring for your mom.  She is very fortunate to have you.

Pie

Emily 123

Yes, the guilt is no fun. I'm so sorry that you're having to go through this. With what might be sundowning +. her paranoia she needed more care than a solo caregiver could supply. Given the nature of the disease, no amount of discussion with your mom over the next 6 months would have made this any easier.  Even if you had waited for the next available spot, you'd just continue to have the same circular, Groundhog Day-like conversations about it, and she might have an even harder time to adjust.  At least she made it into your first choice facility, and she did think the place looked nice--maybe you can work with that as she settles in. Back when she had more bandwidth she specifically told you ''... she wanted to move some place where she could get her meals and have someone to talk to''. That mom would appreciate and support your decisions if she realized what was happening to her.  All her mental energy is focused on dealing with a new environment, so it's not unusual for her to be more confused. 

 My mom and I did look at one place together, but it became obvious to me that she didn't retain any of the visit, so I looked at the other places by myself.  In our conversations she believes that she made the selection, and maybe that's something you might want to run with--a fiblet of 'Well, Mom, of all the places we looked at this was the nicest one, and you said you liked it.''  You don't have to specify who 'we' is.

You hang in there!