What if it’s my fault...

mommyandme (m&m)

I had all the best intentions when I decided (along with my brother) to move mom close to me. We moved all her belongings, well most of them, into the house behind mine in June. My brother lives in another state.  She had no family or nearby friends left in her our home town even though she lived in the same home for 55 years.  She came here willingly with her two cats, finally.  She’s 83 and late stage 6 I believe.  My brother and I were trying to manage 24/7 care there which became very difficult.  I do have respite help here, so far about 28 hrs a week.  I’m planning to put more in place. 

Of course all the social plans I had for mom are thwarted by Covid-19; Adult day care, the Senior Center etc... So we are a bit secluded.  She has my family here, her grandchildren and great grandchildren.  Unfortunately visits with them are less frequent than I hoped.  Darn Covid, but it’s also because of the overwhelming nature to her because of the busyness when a lot of people are around.  And the little ones aren’t as enjoyable due to the weird competition between PWD and toddlers. 

My constant thoughts, for the last few days, are worry that I’m not making moms life better. My gauge was always “it’s better here for her than at a MC so far”.  I gauge that (in my mind) because, to prepare for this commitment, I achieved a CNA license and did my clinicals in a Nursing Home.  It was an incredibly invaluable experience.  

Sooo I still think things are better here for now but... but... 

Maybe her leg muscles are atrophying because I don’t get her up and about enough and that’s why walking and moving is becoming more difficult...? She’s been on oxygen for a week now because her pulse oxygen gets really low when she’s up. Total catch 22.  She seems more depressed than she was, she’s losing more and more communication. Is it the disease or is it me? Am I not engaging her enough? She’s eating way less and is losing weight.  

I don’t know if I’m going to be able to handle this guilt.  Is it the disease... really... or is it because of my shortcomings as a caregiver?  Guess I should stop now cause “Here Come Those Tears Again”.

Helps just to say my fears out loud. Thank you.

M1

You can't second guess these things-it is a progressive disease. Have you considered a hospice evaluation? Sounds like she will probably qualify.

mommyandme (m&m)

M1, I’ve been thinking about that seriously also.  I actually have a palliative assessment next week but I question if that’s futile since her comfort is pretty much all I do already.  Somehow I have gotten her to her appts and the doc referred for the palliative at my request.  She actually had a fainting episode in the office which spurred the oxygen yet Hospice didn’t come up.  I’m hoping the palliative assessor goes with hospice services instead, same company.  Not sure if her Dr would switch it to a hospice referral at this time. 

Thank you for your response. I’m thinking maybe we change her home care into 24/7 without me being the sole caregiver and then I just manage it.  Haven’t talked to my bro about it yet, he’s the financial manager.  Just feels like I’m failing. 

Quilting brings calm

You are not failing.  No one gets cured of dementia. 

She’s 83

She’s late stage 6.   There’s a 100% chance she will move to stage 7 if she lives long enough.  There’s nothing you can do to prevent this. 

It’s time to call hospice etc.  

mommyandme (m&m)

Thank you

Mint

It seems as if you have been a very loving and caring daughter.  This is just the disease progressing and there may be some physical deterioration going on too.

star26

It’s the disease. Really. Triple Really. 1000%. Don’t spend one more second thinking otherwise. She has advanced dementia. Even people with moderate dementia do not have active and fulfilling social lives. Not because they don’t have the opportunity, but because too much hustle and bustle, stimulation, and going here and there often has a negative effect on them. Especially when it’s all new. And especially if the PWD is also elderly. Had there not been Covid, I am sure you would have discovered that she was not responding to the more socially and physically active life as you envisioned. And she still would have progressed in the disease. And you might even think it’s because you were pushing her too much or did this or that. From what you have described here, the way you have handled caring for your Mom could not be more loving or perfect imo. She’s got just what she needs. Her son is taking care of the business stuff, and she’s living with her doting and capable daughter with some occasional visits from other family. She is very very lucky to have you. 

In my experience, the "What ifs" and "What if it's because of something I did or didn't do?" tend to come in waves and revisit from time to time. I really grilled some of my Dad's doctors about "why did this happen? Is it because I did X, Y, or Z?". Once I received the facts from people I trusted, and people that had better perspective of the situation than me, I had to be firm with myself in not entertaining or following those guilt and blame thoughts when they popped in.  

RanchersWife

Good caregivers ask these questions but the best caregivers find the balance in their minds. You’ve done an amazing job! You matter too. You can’t beat yourself up over every thing you don’t do. We are managing a decline. We are on the slope too so we have to be mindful that we don’t accelerate to a point where we are damaged. Guilt will come with putting the breaks on our caregiving intensity when necessary. Try to recognize it as unfounded and dismiss it. 

M1

BTW you don't need a doctor's order for a Hospice assessment--you can just ask for it yourself.

Battlebuddy

Mommy and me ,

   I had thoughts along the same lines as you yesterday. I was feeling bad that my husband had a boring and quiet year . I was , like you , reviewing  my decisions related to social gatherings under Covid . I realize my husband had declined and wished this year ( possibly his last good one) could have been better . 

   I think that what made feel better was to just remember that everyone had a boring and quiet year. Covid  put added stress on everyone around the world. And yes it effected our loved ones and there was decline. But as others have said, there would have been decline anyway. 

   We can only do our best knowing that we have no control over the disease to stop it. That is incredibly sad but it is what it is. Today I got up and plan to go a little easier on myself and shake off the guilt and blame. I’ve done a good job as have you .  

mommyandme (m&m)

Thank you all! Today is a new day...

Wilted Daughter

You should not blame yourself for the unknown. 

*www.thelawofattraction.com/stop-blaming-yourself

Self blame is the opposite of blaming others and both are damaging and futile. You can not and should not try to be a 'perfect' human-being, all knowing, always doing right and never doing wrong. It's not realistic and will only lead to depression. Reflect on why you feel this way and address it head on. Wash the tears from your face and resolve to do your best each day. That's all anyone can hope to do (his or her best).

You are not giving yourself enough credit. Try this: for every negative thought about your accomplishments come up with twice as many positive thoughts. 

Arrowhead

We all have shortcomings as caregivers, we're only human. None of us are handling it well. But, there is only so much that we can do. As long as we do the best that we can, then we have no reason to feel guilty.

GothicGremlin

mommyandme -- this disease progresses, and there is nothing we can do to stop it.  Medications may lessen the symptoms, but they won't cure the disease. We can try to make things better for our PWD, but that's really all we can do -- and you do this for your mom. You are not failing.

I certainly know how you feel about the guilt, I have a lot of it myself sometimes.  But then I go over all the things I do, and I know that I've done the best I can. It's all we can do, you know?

(=Meow=)

What if it's my fault.
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It's simply not.  Life has this very annoying habit of thwarting the best laid plans of mice and men, can be  downright sadistic at times, and I have no idea why.

++++
  My gauge was "It's better here for her than at an MC"
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It was, still is, you have what most people do not - a solid understanding of the alternative(s). 
Again, life can be a bitch, forcing us to chose the best of the bad options, meaning you made the correct decision.  Best of the worst is far from perfect or ideal.

As for not doing enough - elderly people with health problems need incredible amount of help, far more than one person can possibly provide, trying to fill the need will destroy you, can't help anyone if you are dead.

mommyandme (m&m)

Thank you for caring enough to respond to me.  Today is a better new day...

Mint

Nice to hear that.

JustJenn

I would say give yourself a break!  At least that’s what I tell myself!  You are doing your best to handle a very hard situation.  Is your mom safe?  Is she loved?  Is she well taken care of?  That’s because of you!  Nobody is perfect, an even nurses get to go home at the end of the day.  As full time caregivers we rarely get a break.  You love them and try your best, and at the end of the day that’s more than a lot of people get!

mommyandme (m&m)

Thank you again and again, forever and always!