Feel like a terrible daughter

Ronniejm

My mom moved in with us about 3 months ago. She battles with AL for the past 2+yrs. I just don't think I can do this and I feel so bad. I have teenage daughters and grown children at home yet. We even have grandbabies so we have a large family. We can't just get up and leave when we have to. My husband and I are trying, but I'm the one missing my old life. It's  not that I live an exciting life I just miss the freedom to just going for a walk by myself or with a friend. My girls miss the time that we would share with each other. I just can't be available for my family. I know my mom can not live by herself. Am I a terrible daughter? My mom is only 75 years old everyone I read have older parents when they move them into AL or MC. She's only lived with us for 3mths. My father has been gone for 6yrs so I have been taking care of mom since then.

M1

Ronnie you're not a terrible daughter, you're doing all the right things to take care of your mom. Every family situation is different and no one here can judge for you. If you need to find a good place for her to live that is neither unkind nor selfish. There are many stories here of people who thrive in memory care. And chronological age has nothing to do with it.....

harshedbuzz

Ronnie-

It's difficult. 

Given that you have opened your home to adult children and created a multigenerational household, it seems unrealistic that you can't carve out some time for lunch with a friend, dinner with your husband or a walk with your own thoughts. Surely one of the adults accepting your support could keep an eye on grandma for a few hours or a weekend.

That said, not everyone is cut out to be a hands-on caregiver and not every PWD is easily integrated into the household and cooperative around care. No guilt. There are some aspects of MC that may be a better fit for your mom- dementia informed care by trained staff who only work 8 hour shifts, activities that are scaled to people who have had a cognitive shift, structured and predictable schedules. 

Need, not age, should be driving care and placement decisions. The residents of MCFs do skew older, but that's because the rate at which people are affected with dementia increases dramatically with age. 

HB

ANN L.

Ronnie, I am so sorry that you are going through this with your Mom.  I think it is common to have feelings like you are experiencing ~ I am going through something similar at this time.  If you are still able to have a conversation with her, try talking to her about this.  If not, it might be helpful for you to think about what your Mom would do if she were in your shoes.  Would she want to cause hardship for you or your family?  I would venture to guess that she would not.  Age is not the defining factor to determine whether someone should live in a care facility.  Having the correct type of care available 24  - 7 is what should guide your decision.  You will be a better caretaker for her, only if you are able to take care of yourself.   That may require some changes in living arrangements.  Take care, and wishing you the best!

mommyandme (m&m)

I feel you, Ronnie.  My 30 year old daughter just told me last night that she’s jealous of my mother commandeering my time. When my adult children and grand children need/want me, I’m not able to just go.  It weighs on me for sure.  I definitely miss my freedom to come and go as I please.

glitterqueenscare

I want to thank you for posting this today, you made me feel a lot  less alone.  My dad died of Alzheimers in 2015, he was 76 years old. My Mom placed him in a home when he became a wandering risk and was combative. Since that time  my Mom has been diagnosed and I have been caring for her increasing needs ever since. She just turned 77, she had signs of the disease before Dad died but refused testing until we forced her to do it. She is in stage 5 or 6 of the disease now.  Last summer my husband and I sold our home and moved in with her to help her more as things continued to progress.  Since that time it's like she has fallen off a cliff and her care needs have tripled.  We can no longer leave her alone and everything from using the bathroom to fixing a meal is totally dependent upon us.  She is starting to have incontinence issues and is up all night hallucinating that she isn't in her home or she needs to be somewhere else like an appointment.  We have had to make the house into a sort of lock down unit to keep her from escaping and wandering out the door.  She constantly makes a muttering humming noise which would drive a saint insane, it's all day long.  I feel like an absolute prisoner, chained to my Mom day and night.  It's hard not to resent her, the disease the situation and the way our life is right now.  I am constantly caught between overwhelming resentment of the situation and grief at losing my Mom who I love so very much.  When we moved in with Mom my hope was that we would have years with her but this is not sustainable. It is currently effecting my job, my health, my marriage, my relationship with my kids, basically every aspect of my life as you describe. She has some money to pay for care but at $12-$25 per hour around the clock care is priced out of the budget.  I work from home, my husband works out of the home and our plan was between my working from home and a few hours of care each week we could manage the situation for awhile as she progressed however when we moved in with her she was still able to be left alone,  recognized her surroundings, could go to the bathroom alone, etc.  This week I spoke with a social worker about putting her on a waiting list for a local MCF, I know it could be 6 months or more but I just need to know this will not be forever.  Our experience with our Dad was that we should have placed him sooner as by the time we did he didn't understand where he was anymore and he became far more combative and delusional. Staff never knew him as him and it effected his experience in care. It's sad, I tell myself the memory care unit may actually be really good for her however I know Mom would never have wanted to go there.  So then I feel guilt on top of the resentment and grief.  I think part of it is I see and hear families keeping their LO home much longer, going great lengths to care for them and doing it selflessly. I am trying to remember I have been doing this a long time already, I have nothing to be ashamed about and I suspect neither do you. It's ugly to be a caretaker and make these decisions but I am working on the emotions, working on learning to prioritize my needs too and understanding that I can still care for her even if she is in a MCF, she will still need me to be her advocate and be present for her care. So will your Mom.  I hope you can make peace with these decisions, it is not easy and something I too am working on.  If I follow in my parents footsteps I could get diagnosed in my late 60's or early 70's and when I think of it that way it makes these decision much easier for me to make.  Good luck to you and bless you, your Mom and your family.

Wilted Daughter

Ronniejm, Glitterqueenscare:

Thank you for sharing your experiences. You have nothing to feel terrible about. If you are doing your best, if your are trying to help not harm, if you are putting the needs of someone above your needs then you should not feel ashamed. 

We can't be what someone else is or wants us to be. Not everyone is capable of being a PCA. I am struggling with guilt too. My mother's behaviors are increasingly getting worse and she feels that I am the problem. I am slowly getting affairs in order and come to accept that within a year or so our living arrangement will have changed for the better. 

Give yourself a break and plan for a change...change for the good is nothing to be ashamed of or feel guilty about. 

Have a blessed Easter!

Teresag56

I am right here with you. My mom was in assisted living for 3 years. Then covid happened...did not see her for almost a year. I felt guilty...so I brought her home to live with me. It is just her and I...my sister lives in another state. I have POA over everything. Well I did not realize how much my mom had declined since I had seen her. I have had her with me since Jan. And like you I have no life . She is in good physical shape moves around and walks ok..but her memory is gone and she does not do anything for herself accept dress and take a bath when she will bathe...that is one of my biggest issues with her. Oh and the noises she makes....but somedays she acts like her old self...but I do miss my life and I hate this disease..at least you have family I have no one

BarbaraG

I feel like a terrible daughter in law.  I've been living in an apartment with my blind elderly mother in law for 83 days and I'm ready to give up.  I admit defeat. I tried. I failed. I cannot be a 24/7 caregiver to a blind alzheimer's person. She's declined a lot in the past year and basically needs a bed to sleep and a chair to sit and someone to feed her and put drink to her mouth and let her go to heaven. She has no quality of life. Now I have no quality of life. I am sleep deprived, nutritious food deprived, pinched nerve in my neck has returned so pain radiating down my shoulder and numb fingers. Panic/anxiety attacks and bursting out bawling at random times is my norm. Why can't we all die with dignity and why does it have to be so expensive for them to go into a facility?  It will cost more to hire 24/7 caregivers to come into the home than to go to a facility and even that is too expensive. Alzheimer's SUCKS!

 Barbara

Kaychaz

Hi,

I just joined this forum today after having had a horrible conversation on the phone with my mom.  I am an only child who lives in TX, I have a husband, 4 grown children and 4 grandchildren.   My parents, 92 and 96 live in OK 3 1/2 hours away.   They have been living in their own home until recently.  My mom had been caring for my dad who hasmoderate dementia and a few other health issues.  They had Home Health coming in 2 times a week for showers for him and also vital checks for both of them. Plus a HH nurse came once a week and filled meds for them.  My mom and dad have been sharp for years, both mentally and physically so this was all new as of a couple of years ago with my dad and just recently with my mom.   This was wearing my mom out as my dad is incontinent and pretty helpless.  Still can move around ok with a walker but can't really tend to his bathroom needs anymore alone and his bed needs to be changed everyday even with pads on it. 

 I was going up every 2-3 weeks and staying a few days, bringing food portioned out for the freezer as my mom won't cook anymore.  I had begun to see signs of dementia in her for the past year or so but it wasn't bad.  I had tried to get them to come to Texas but my dad wouldn't come and so my mom was honoring his wishes.  In January, my mom's heart rate started being extremely low all the time and she had several other complaints.  One weekend when I was there, I decided enough was enough and took her to the ER.  Her heartrate was 36-40 beats a minute.  They sent her to the heart hospital for a pacemaker.  Had I known that the anesthesia would have caused the dementia to worsen, I would never have agreed to it, nor would she.  It became obvious after 2 hospital stays that she would not be able to care for my dad anymore and Home Health would not be enough either.  That was our "sign" as far as them needing to move to Assisted Living as neither could really care for themselves.  My mom was even more confused than my dad.  My husband and I both work, also, but I stayed with them for 5 weeks and my husband came and helped out for 3 of those 5 weeks.  We were meeting ourselves coming and going trying to care for both of them.  Plus they are nocturnal and don't sleep at night but wander around turning every light in the house on and making coffee at midnight, 2AM, whenever, time means nothing to them anymore.  It became clear that we couldn't care for both and maintain our health or sanity!  We found a wonderful place not far from their hometown and after a delayed move because of an ice storm and then a snow storm, we moved them in.   They are still confused and not happy but I  can at least sleep at night knowing they are safe.  They both had fallen several times and an ambulance was called numerous times while at home.   

This was by far the hardest decision I have had to make, moving them into AL and it breaks my heart to see them so unhappy, but they were unhappy at home so really what difference does it make?   They have tons of extremely patient and kind people caring for them now, much kinder and more patient than I had become, so I know they are in good hands.  I still get calls from my mom wondering where they are and why they are there and wanting to know when they can go home, but I just have to stand my ground and assure them that they are where they need to be for as long as they need to be.   It's all about what they need, not necessarily what they want now.

CareBear81

I moved home to help take care of my mom. Since I was very little I was told my parents I would never put them in a nursing home. Well ... dad is the full-time caretaker and he's going bonkers. We've been doing this for 5 years now. Nobody said it was going to be easy. I'm going to school and about to graduate. It's been difficult juggling the two because I can't always be there for my dad. When we started all this, we were in agreement that she wasn't going anywhere. She was going to be right at home. We felt like she would decline faster if she were in a facility. She's on hospice now but at home. This is where she needs to be. I don't know what I'm going to do next fall cause I'm moving to either Austin or San Antonio for school. I'm torn on what to do. It makes me sad to think about. Especially after the way I saw my dad act last night. He was giving mom her meds in applesauce and he was force feeding it to her. It was just disturbing. I think he's tired of doing this. But that's still not an excuse to treat her that way.