How do I not feel guilt and anger?

Chris2337

Hello, my mom (LO) has been in MC since March 2021, She lived with us for a year before her dementia and water on the brain worsened and became too much for us, home health, and nurses to take care of. She needed 24/7 care. Now that she has been there a year, I find myself feeling guilty for not seeing her as often as I should. Her facility is close and I try to go once a week, but every time I go the same thing happens. She gets back from breakfast we chat and she has to go to the bathroom and expects me to help her in the bathroom. This brings up unpleasant memories of when she lived with us. I try and get the nurse, but usually I end up taking care of it (again). 

When I get there, sometimes she is wearing her clothes and sometimes she is wearing someone else's. The staff has lost 3 pair of hearing aids, so I have just given up and take them only when I see her. I get so angry at the staff for losing things and not having her own clothes.

I know this is nothing out of the ordinary. I know she is in the best place she can be in with 24/7 care. God bless all the staff for taking care of her. They are the heroes in this new chapter of mom's journey. I know it is her body, but her mind is drifting away as she forgets names, calls me her brother, and asks how her mother is. I cry when I leave knowing this is just the way it is now and I have to accept it. I am the only child, so all of this starts and ends with me.

Does anyone else have these feelings?

RanchersWife

Hi Chris,

My caregiving journey is over now. My husband and I had several sayings we repeated to each other when things were hard. We cared for his mother for 4 years. It wasn’t easy. None of this is. My husband and I did everything his mother needed. He struggled at the beginning. I tried to do most of the personal care but eventually it became routine for both of us. I struggled more with wanting to place her. We never did place her.

Our sayings. 

1) It is what it is.

2) When this is over we will have no regrets.

3) It’s not what you feel. It’s what you do that is important. 

Let’s apply these to your situation. You cannot care for her at home. She’s where she needs to be to have good care. 

Personal care isn’t fun for anyone. It is a very real way to give your mother her dignity. She deserves to be clean and healthy. If you can ensure that then you won’t have any regrets. You will also be able to make sure the nurses are caring for her properly this way. I understand avoiding the situation but here is where you define yourself. Spend the time to solve the care issues at her facility. 

Not wanting to do something doesn’t make you a bad person. Not doing something you know needs to be done is wrong. So, when you care for your mother you are doing the right thing and you can not worry about how you feel about it at the time.You will have peace when this is over if you do your best. Please know that I lost patience and struggled a lot. Don’t beat yourself up. Just keep doing the right thing and it will be ok. 

May flowers

RW, I appreciate this post so much and hope your family is doing well and healing from this difficult journey. Your sayings are so apt - #3 is so important. I think this is what separates caregivers (whether full time or managing a LOs facility care) from those who sit on the sidelines and let others do the work because it’s too painful or hard. 

harshedbuzz

Chris-

I am sorry you are dealing with guilt and anger in this situation. Unfortunately, right now many MCFs are not always staffed to the degree they were pre-pandemic, so some of what you are experiencing on visits might be related to that. But some of it is just the nature of the workings of even good MCFs.

Given that you are probably the only visitor your mom has, I could see where you would feel badly about a single visit weekly. I found visiting hard as my dad was initially unpleasant and we'd never enjoyed a warm relationship. Visits pained my mother, my uncle could barely emotionally manage a drive-by every 6 weeks or so (even though I purposely chose a MCF in his town rather than mine) and I am my parents' only surviving child. But I forced myself to make 3 or 4 quick visits a week which relieved me of any guilt during his stay or regret after his passing. Sometimes I was only there 20 minutes, but staff saw me regularly and I think that was reflected in the care he got. 

You might avoid the bathroom visit if you time your visits differently. It is pretty common to need a bathroom break about 15-30 minutes after eating. Perhaps it would be better to make a late morning visit and escort her to lunch on your way out. This was a problem for my dad as the disease progressed and staff asked me to stop bringing him the hot coffee that led to an extra change of clothes.

The clothing issue is a common one. Sometimes we found dad in other people's clothing or on sheets we didn't recognize on days when he'd need to be changed more often because of soiling accidents. They did laundry individually as a rule but sometimes there were mix-ups. But more often another resident had "shopped" his drawers (dad refused to shut his door) and staff put him in something from his stash of donated things until they'd sorted out where his stuff went. I found my MIL and aunt had fewer issues with this because family elected to do their LOs laundry at home.

Dad lost a hearing aid while in MC. I found on once behind his bed, but suspect it fell out and got bundled up with sheets being changed when it disappeared. My friend who had her mother at home with her caught mom throwing them out one night and took over managing them. One night she removed them from mom who promptly grabbed them and plopped them in the denture bath. It's very frustrating because of the expense and hassle or replacing them. There are tethers that can help-- they attach to the devices and then clip onto a shirt. 

Another thought, when my aunt was guardian of her sister, she found the level of care offered in the excellent MCF wasn't enough for her liking. She decided in the stage where her sister needed more hands-on care rather than prompting to move her into the SN wing of the CCRC while still spending most of the day in MC doing meals and activities. 

I hope you can find a way to make this work out better for you.

HB

Lindsay22

Here's the talk I've had with myself: You feel guilty and angry all the time no matter what you do. Visit more often, angry.  Take a week off, guilty. Go on a trip your family has been planning for years, guilty. No one else from the family goes to visit, angry. Etc. etc. No matter what you do you feel guilty and angry so just feel it.  Give yourself permission to feel guilty and angry.  This is a bad situation and we are entitled to feel what we feel about it.  

That said I have had to have some tough talks with myself about doing what needs to be done.  There is no one else to do these things, this is my responsibility alone (also my mom's only child). Is that "fair" or ideal? No. Is it the hand we've been dealt? Yes. Like Rancher I try to conduct myself in a way that I can be satisfied with when it is all said and done.  I try to do the best I can do, which often doesn't feel like enough but that is what I have to give.  This also means that I need to take breaks from visiting because my child needs me, or my job has been demanding, or my own health needs attention.  Again, I am doing the best I can do and sometimes that means not seeing my mom for a couple weeks and I have to let that be ok. 

Chris2337

Thank you all for your kind words of encouragement. I agree with everything you all said, especially feeling the anger and guilt and that is okay. Every time I go, it seems like I am the only person visiting their LO. And yes, I will try adjusting the times to later in the day-that is a great idea. Is every visit going to be perfect? No, but I am going to do what I can do to let my mom know that I am here and love her. 

I am lucky enough to live with my daughter, son-in-law, my 6yr old grandson, and my 7-month-old grandson. So if a visit goes sideways, I always have them to lean on for support. When mom lived with us and was being taken to the hospital, my then 5yr old grandson said "can't grandma just get a new brain?" I of course lost it crying because he was so perceptive that something was wrong. Indeed, it is what it is applies to this disease daily. And I will have no regrets because I have done more for my mom that she and her brother ever did for my grandmother. If I want to take a vacation, then I will take a vacation, or play with the kids, or watch TV with the family. Mom is in a good place that I don't have to worry.

Thank you all again for your support. The journey continues on Mother's Day this Sunday!

Chris