Resentment(3)

Tomlinson

My dad died in March 2021 of dementia at the age of 92. He had been in a nursing home w/dementia for 4 yrs.

My mother was diagnosed with dementia 3 yrs ago and they were in the same building, eating meals together but not much else. Of course, this was during lockdown at the nursing homes when my dad passed. She is now 90.

Since visitation has opened up and I'm now able to take my mother out of the nursing home. She keeps telling me "when I go home". I've been told by the nursing staff not to mention she's not going home since she'll forget in an hours time regardless.

As the only responsible party in  my family I'm growing tired of this response from her. I take care of all financial, legal and health issues for her which she does not realize. I can't keep my sanity and move her back home. Getting caregivers would a nightmare for when I'm not available would be a nightmare. 

I know she is well cared for at the facility. I want my life back. I want to enjoy retirement like my parents did. Going to FL for over 35 yrs, vacationing all over. All of my grandparents died before age 85. 

Am I wrong to feel this way? It is causing strain on my marriage also. 

mommyandme (m&m)

NO! Keep your life! 

I wouldn’t think your marriage would be strained since your mom is safe and not in your home. 

Is it strained because you’re in limbo with your thoughts on this and you are obsessed?  Or because your spouse thinks you should be bringing her home? 

Be kind to yourself.  They are fortunate to have a child like you.  Just don’t worry about Moms feeling so much, as they are fleeting.  She will have what appears to be discontent at your home too. She’ll have needs and wants that are impossible, just the same. 

Travel, be free and know you are doing your best.  Don’t consider Plan B (moving her in) anymore. Let it go. Ease your mind about this as there are plenty of other stressors to decide on.  

Hopes for peace and comfort are being sent your way.

jfkoc

Feelings seem to have lives of their own so I would never say you are wrong. I understand that you would like at least some of your life back....a worthy goal. How to do it.

Is your mother in an actual nursing home or is she in a facility dedicated to caring for persons with dementia? 

Laura53

Hello, this is my first post. I am FT live-in caregiver for my mother.  She is later stage- only able to pivot into a wheelchair with lots of help. I’ve been living with her since January.  I read posts all the time and it’s very helpful. This is a difficult struggle but I’m committed to keeping Mom home and I’m a nurse so I have the training to do it.  

I am reaching out to get an idea how much people are paying in reality for MC.  I am being paid by my mother’s estate for caring for her but I’ve only asked for enough to cover my bills. This weekend I am discussing with my brothers that I need a bit more and that I also need to set aside tax money. I have help from a home health care aide twice a week for four hours each time. Otherwise it’s all me. Since Mom fell and broke her hip and had surgery in April we are living out of one small room on the first floor. I sleep on a mattress on the floor that I drag from the entryway morning and evening.

I have defensive feelings about any push back about being paid more. I’ve used all my savings in the past 10 months. One brother is about 5 miles away and he’s been here once in the last month. My other brother lives on the opposite coast so can’t be here to cover any hours. 

I would love some accurate idea of the cost for MC so I can back up my request for more money ( by the way only going from $3100 to $4000/month but I also need to start setting aside tax money which will be about $2000/ month so not a crazy request)

Please help me have info to present to them. You all know how hard I’m working and I’m not complaining because I’m grateful that I can be here. She was always there for me.

Thank you so much.

Stuck in the middle

Hi, Laura.

More people will see your post if you start a new thread by clicking "new topic" near the top of the screen.

I am not paying MC costs, but I think it costs $6,000 - $9,000 depending on were you live. Some pay as much as $12,000/mo for super special care in a high cost area.  You might call the Alz Assn branch where you live and ask them what it costs in your area.  One thing is certain, $4,000 is a bargain.  I'd ask for $6,000 and settle for $5,000 if I were you.

Stuck in the middle

Tomlinson, in your shoes I think I would go on vacation when I wanted and visit Mom when I was in town.  When she spoke of going home, I would just nod my head.  Here in the Bible Belt, going home means going to live with Jesus, and we're all going home sooner or later.

You and your husband have only so many autumns.  Don't waste this one.  

I looked after my mother until she died at 96.  By that time, my wife had AD and was no longer able to drive, cook, or manage her meds.  I'm not getting one of those affluent retirements you describe.  If you can get it, grab it.  

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MimiMinder

Hello and welcome! You are not wrong to have the feelings you have. Period. You have every right to go and enjoy vacations and retired time with your husband as you had planned. You can still manage her affairs, realizing that she has paid staff in the facility to manage other aspects of her daily life. You can pop in from time to time to access how things are going, but hopefully you will know in your heart of hearts that your mother would want you to be enjoying life with your husband and not sitting in her faciity being an unpaid caregiver.

If you are taking your mother out of her facility for a drive or an ice cream cone, I might seriously reconsider that. My mother has trouble reorienting when she comes back to her facility. Unless it is a medical appointment, I think long and hard about upsetting the flow of things. It is very limiting, as we can only visit in her room, but it is better than having her question why I am dropping her off at 'that place' when she wants to home, etc., etc.

For your mother, it sounds like 'going home' is always top of brain. I wonder if you can validate her feelings with some phrases that work for you like "I hear you" or "Oh that would be something" or "I know but Dr Smith hasn't signed off on that plan yet." And then move on to another topic...

One of my goals is to keep my mother in her happy bubble. Mind you, she is not always happy, but I try to envision what I think she needs to hear. An actual conversation we had went like this:

Her: Have you been to see the folks today?

Me: Umm...no.... (Her parents have been dead for more than 30 years)

Her: Well, why not?

Me:  I guess it just didn't make in on my schedule.

Her:  You should do something about that.

Me:  Very true....I'll look into that....

~ Good luck getting some trips on your schedule!!

harshedbuzz

Tomlinson-

FTR, yes, I do sometimes feel the resentment creep in. I am of the opinion that it is OK to feel what you feel- no apologies required. 

My parents were wonderfully involved grandparents to my sister's kids- sleepovers most weekends, trips to the Caribbean and Mexico, buying all clothing (mom loves to shop for babies/little girls/young women) and paying for all their activities. When my sister became ill and was dying, my parents fostered them for 4 years until their deadbeat dad was tipped off to their Social Security benefits and developed a burning need to parent which crushed them. 

They retired to a golf/beach resort the very week my son was diagnosed with a form of high functioning autism. After a time, they bought a place in FL and started spending part of the year there. Between grief and later early undiagnosed dementia, dad became obnoxious and then nasty while mom blew off my concerns. I always said they'd come back when one of them needed the butt wiped and I was spot on. Dad crashed and burned after about 20 years of blissful retirement from an alcohol-related dementia about 5 years ago and my parents took over my life. Dad died a couple years ago, but I still look after my mother. I'm an only. One of my nieces will do a visit every month (the other niece is a complete deadbeat and used to surface from time to time looking for drug money until I scared her off) or so and my son pitches in with much of the driving, cat sitting and odd jobs around her house but for the most part the responsibility for mom's emotional and physical well being is mine alone. It is an awesome responsibility.

In your shoes, I would try to squeeze in whatever you'd do in retirement where you can. My DH is 10 years older than me and does have some cardiac issues. We try to grab short trips where we can rather than wait until we can do the longer ones. On the issue of "going home", we always put the "blame" for being in memory care on dad's doctor wanting him to get rehab so he could be safer in the house. 

Laura-

Welcome and sorry you need to be here.

If your mom's healed, I would be looking at a MCF now. There's often a window in which a MCF will consider a resident joining their community and if it closes, you're option will be a SNF at considerably higher cost/less dementia-informed care and activities. 

Dad's MCF was in suburban Philadelphia and was charging $7200/month; my aunt's outside of Boston was closer to $10,000/month. Both number are from 3 years ago- I am certain they'd be higher now. Most families pay by using up assets and income from pensions and social security. If there is no community spouse, the home is sold to pay for care. If/when that runs out, Medicaid is the safety net. A CELA can advise on planning for Medicaid which has rules that must be followed during a 5-Year Look-back. FWIW, a CELA can advise on a Medicaid loophole that could allow "you" to keep her home if you lived there providing care keeping her out of a SNF. 

I wouldn't present the cost of what placement would be, I'd present the total compensation package (wages, benefits, time off, retirement contributions) available for someone with your skill-set during a pandemic that has created nursing shortages as a starting point. It sounds like your brothers are trying to preserve assets for some future inheritance with isn't cool.

HB

Tomlinson

Thanks for the support everyone. I love the encouragement to live my life and enjoy the remaining time I have to enjoy retirement with my husband. 

I know my mother is well taken care of in the dementia unit where she resides. 

Life goes on, Live it to the fullest!