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A quick background.
My oldest son was murdered and the trial wrapped up in September 2019 (1 1/2 yrs) we are almost done settling his estate.
My step son is battling stage 4 colon cancer.
I work a lot of hours. I have ulcerative colitis which has been in a non stop flare.
My brother lives out of state and has never helped with anything.
The last 2 yrs I have had caregivers in my moms home 4-5 hours a day.
Her health and mental capacity has diminished a lot in the last 6 months.
She started talking about all the people in the house that weren't there. Refusing to change and cleanup after having accidents.
A caregiver caught her going out the front door with her purse. She told the caregiver she had an appt. But couldn't remember where or for what?
I tricked her into an appt with a neurologist saying it was a yearly Medicare screening (thank you to those here that gave me the idea)
She failed all questions. She said the year was 2095 and her husband died over 50 yrs ago (he died in 2007) she couldn't remember what her phone # was (its been the same for 60 yrs) the list goes on and on.
The DX is dementia (surprise)
I was terrified she would get out at night and wander into traffic.
24/7 in home care was not even remotely something we could afford.
I made my brother come from out of state to deal with moving her. I have been so stressed. She will never be voted Mother of the year. She's a narcissist, never told me she loved me.....
Again thanks to you on this forum my brother told her that the house had to be fumigated for termites so she needed to go stay somewhere.
I had found a nice NH. Her room is massive with her own bathroom. As my brother got her out of the house I had movers waiting to move her entire living room and bed to her new place. We got her in just under the wire when the lock downs went into effect. Its been 2 weeks. I haven't contacted her mostly to save my sanity. I haven't had a break in 10 yrs and the last 2 have been brutal. Today she had the NH call my brother. She said she was missing me (insert extreme guilt) she said to my brother * I'm not in my home* he told her again her house was being sprayed and wasn't safe to go in.
I need to somehow prepare for talking to her. I'm not a monster I don't want her feeling alone. My health is more important right now.
Do I just keep telling her the house isn't ready? She's never going back there. Her dementia is to the point if you tell her something happened she believes it.
I also had kidney surgery 2 weeks ago. I've lost the last 10 yrs dealing with her nonstop. I'm in my 60's I need a break :(

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First of all, I am so sorry that your son was murdered. Nothing could be worse than that. I am a mother of two children and I can’t imagine the pain that you went through and the emptiness that you will always feel.

It’s so hard to be a caregiver. Especially dealing with the loss of your son. Be a caregiver to yourself right now.

My oldest daughter had UC which turned into full blown Chron’s disease. I feel for you. The flare ups are miserable. My daughter is always in and out of the hospital with complications.

You have had the worst of times and you need time just for you however you want to spend your time. It’s your turn to breathe. Please do not feel guilty about not going to see your mom.

You can’t visit right now due to coronavirus. Your mom can wait. You can’t run on empty. This is your time to refuel. You are grieving. Mourn the loss of your son.

Take care 💗. Be safe. We care.
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Take a break and take care of you.

No guilt, let her talk to your brother for a few weeks.

I hope you feel better soon.

Great big warm hug!
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You do not have to lie right now, you have the perfect excuse not to go see her, almost the whole world is on lock down and visitors are limited or not allowed at all at nursing homes.

Use the next few weeks to look after yourself, try to get your own health under control, support your step son and try to relax.
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I had groceries delivered to the NH today. Well her idea of groceries. Chocolate, more chocolate, Pringles and diet coke. I called and spoke with her. She was very pleasant. Tickled to get the snacks and was busy watching TV. I told her that once this *flu* was over I could come and hang out with her. She thought that sounded great. Not a word about going home. Nothing. Strange. I think the dementia has progressed to the point that she thinks the NH is her house. This pleasant woman on the other end of the phone resembled nothing of the woman I have been dealing with.
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disgustedtoo Apr 2020
Sounds great! At least she enjoyed the "gifts"!

Is it possible they might have Rxed something? There are some medications, like anti-anxiety meds, that can take the "edge" off without doping them up. They did use this briefly when we moved mom to MC, only as needed. It was a one time Rx, never refilled (until later, we needed it to tone down the sun-downing she got big time with a UTI!) The smallest dose was just enough to take care of this, but she was still up, about and responsive. Also, many places do recommend at least a 2 weeks hiatus before visiting, primarily/especially for those who are dead-set against moving. In your case it will be a lot longer, due to circumstances!

Enjoy her over the phone while you can. Some people have suggested some kind of Echo thing, audio and possibly video, which would allow you to see/chat with each other. You might consider that, if someone can post the information. Keep the gifts going - she liked getting those! Anything to keep them happy!!! :-)

Question - is this really a NH, or an assisted living memory care?

As to the original question - whatever works, use it! Still being treated, wait for this "flu" to subside, until doc gives the okay, defer to your brother, he is taking care of it, whatever works! That is if she even asks - don't offer info, just respond if she brings it up. Short term memory is usually the first to go, so she will likely forget whatever you did say and she will ask, possibly again and again and again! My mother can repeat the same statements, questions, comments over and over again - usually one has to "move" the conversation onto something else. She also pestered my brother about taking her back to her condo, but never me. I let my 2 brothers do the "move" and stayed away at least 2 weeks. She has never asked me to take her back. Nine months after moving in, that focus changed to their previous home (sold over 25 years ago) and her mother (gone 40+ years!) So, she stepped back a little in time, and has a little more since then, but hasn't mentioned the house in a long long time.

Meanwhile, use this lock down time to take care of yourself and get healing! Worry about visiting later, much later, when we get past all this virus stuff! Work on getting better!!!

Also, try to alternate your "gifts" with cheery greeting cards, letters, magazines, or other little trinkets - unless she is a string bean and can use extra calories, be careful with too many "goodies"! Mom gained 20 # in her first year, mainly due to ice cream bars they offered for dessert... I might bring some little treats now and then, but limit it (and she usually tries to give some back, so I have some too! I make sure we each have a couple.)
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You should take a break and get your strength back up before you do anything else. Take care of yourself!
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Yes, just keep on with the house not being ready. At some point she'll likely forget where she lived. When she says she wants to go home, she'll probably mean where she grew up.

You can't help her about feeling alone. She would feel that way even if you called her 3x a day.

You're important! Take care of YOU right now. You deserve and need this time to heal mentally and physically.
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SoVeryExhausted Apr 2020
Its funny when I took her to the neurologist she pointed out a church and said that is where she went with her grandmother when she was little. We live in the southwest she grew up in Arkansas. Most of her memories seem to refer to when she was young and growing up.
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I am ABSOLUTELY COMMITTED to the belief that when you are a caregiver, your first goal is SAFETY, the second is MEETING PHYSICAL NEEDS, and the third is SECURITY, PEACE , AND EMOTIONAL COMFORT.

I am an absolutely FACT BASED HONEST person WHEN I am dealing with an individual who is playing with the same general mental equipment as mine.

IF I am dealing with someone who has been PROFESSIONALLY DIAGNOSED as having dementia/severe memory loss, it’s say whatever you need to say to help them be at PEACE. In your personal situation, YOU NEED AND DESERVE A SENSE OF PEACE AND COMFORT as much as your mother does.

I notice that you are still responding on an emotional level to what she’s saying to you. You CAN’T. What she says now has nothing to do with whatever she said to you BEFORE DEMENTIA. She may say things that she learned in your past, like the way you’d learn to play the clarinet or recite poetry, but her saying them is now a random product f her broken brain, not having to do with a reaction to you or whatever you do.

For kind, conscientious caregivers, this can be an enormous effort to manage, but YOU MUST shift from “she’s saying something about something I did, and maybe I was wrong and I’m a bad person” to “she’s wording with random words coming from a broken brain, and I’m going to stop reacting to what her words are and continue to do the very best I can for her while still honoring the fact that I also deserve respect and self care”.

You don’t have to “prepare” because she will not remember what you say. YES, you are NOT a monster. YES you do deserve to put YOUR well being first.

If you can be comfortable doing so, tell her you love her, tell her you will be sure she is well cared for, tell her you will see her soon, then LEAVE, do something you love to do, and feel comfortable in knowing that you’ve done what was the best you could for both of you.

HUGS!!!!!
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SoVeryExhausted Apr 2020
Thank you so much. Xo
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My mother used to tell my dad that she would take him home when the doctors said he could go home. She knew he never would. It puts the responsibility back on the doctors and off you. Good luck.
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You sure do need a break! Your mother is fine where she is, be very logical and understand she has lived her life and you have helped her for 10 years. It is time for you to let go of the guilt (I know easier said than done, but please try) and start living your life. You were so fortunate to get all of this in place and have her safely placed before the lock downs. Take that as a sign - she's meant to be there and it is your turn! You deserve a life too!
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Here is a list...
The house is not yet ready.
They finished spraying but the fumes are still there we have to wait.
The fumes are gone but some walls were damaged they need to be repaired.
When they were repairing the wall they found a leak in the roof, that needs to be fixed.
They finished the roof but the ceiling needs to be fixed.
The walls and ceiling need to be painted.
And she is not going to understand or remember any of this. She just wants to be reassured that things are going to be alright.

Do what needs to be done to get the items out of the house and the house ready to sell if that is the plan.

Many people will say they "want to go home" I have read what they mean is they want to go back to when they felt safe, when the felt well and in control. Reassure her that she is safe and you and your siblings will take care of her and make sure she is safe and cared for.
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kdcm1011 Apr 2020
We would just tell our mom the furnace was STILL being repaired & leave it at that. Eventually she stopped asking.
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