Long story short....soon, we are placing my aunt in an assisted living facility. She is not happy about it - but because of having a colostomy bag she will not learn how to change, this is really the best option. We tried in-home caregivers, but Murphy's Law - she always had a bag emergency when no caregivers were there.
I will cut to the chase. I just had a phone convo with her best caregiver to give a heads up about her move. The caregiver seemed to understand, but when I hear myself trying to justify all of this - out loud - I can't help but feel like I'm not doing enough and being a terrible niece. It's like I've said for awhile now, it's not easy trying to tell someone they are being a burden without coming out and saying "you are being a burden."
This is a long enough post, but I will add: this is not just a random decision - everyone from family to a host of doctors - have been trying to convince her move to AL (for years now). Her house is way too much to maintain and has constant problems. She doesn't drive anymore because several years ago, she drove through a restaurant (luckily not killing or hurting anyone). The list goes on and on.
Thanks for listening - maybe that's all I need - someone who understands just to hear me.
The key is to give I statements.
I am feeling xxx due to not having the skills necessary to support you as you need and deserve. You are very special to me.
I feel xxx (confused, disappointed, sad) that I am not able to give you what you need as I really want to.
So, you make this about you, not her.
Depending on legal responsibility / authorization, 'you' / family member do not ask the aunt if she wants / what she wants. You make these decisions, knowing she will be angry, frustrated, fearful ... this is very normal / natural. It is said that it takes 1-2 months for a person to get 'used to' their new normal when they move to a facility.
So much depends on her cognitive functioning.
If she is considered legally to be of 'sound mind' (able to make her own decisions about her welfare), then you cannot do anything overall.
Trying to drive a point (what she needs / care she needs) home, like banging a hammer on a nail won't do anyone any good. It will increase the already highly charged emotional and psychological feelings and responses.
You know what you can do.
You try your best without arguing or convincing.
You give your aunt SPACE to talk and get out what she feels.
Then, either you / a family member or her make a decision that serves her.
She may not understand nor agree. A lot of her response / reaction to change is fear of the unknown and losing independence. Relate to her with compassion, understanding what is behind her stance ( "I don't want to go").
Hire a medical social worker to help you or ask MD to recommend.
This person could work with / help you and your aunt.
An outsider / professional often is listened me in ways that a family member isn't.
Do keep in the front of your mind that:
1) there is an adjustment period.
2) you are doing what is in her best interest/welfare, even if she doesn't know. You are responding out of love and loving intentions.
3) Give her time to adjust.
4) Take care of yourself during this transition - self care is vitally important.
Gena / Touch Matters
The grief is very similar. The person you loved is gone, and with that, all the future with them is gone also. The grief is real- treat your feelings about caregiving as you would grief.
Recognize this and treat yourself accordingly. In other words Ben Gentle With Yourself - no guilt
Anymore, attaching a stigma to AL is nonsensical.
Guilt requires causation and a refusal to put thing right. You didn't cause this. This is not yours. Your Aunt requires specialized care now, and you aren't qualified to give it.
If this self-harming you are doing to yourself continues I would seek a bit of counseling help with an in-person cognitive therapist. The self talk you are doing at yourself isn't reasonable, and repeating it to any and all becomes, as you mentioned, and sort of apology for living and expecting to have a life. It is the taking on of responsibility that isn't yours. Our brains are fragile and they tend to follow habitual paths. Taking on of blame is a sort of self-punishment.
You can change things now for your aunt only by loving her, visiting her, and listening to her. The end of life, illness, etc. is tough stuff, and it's reality, and it can't be changed with wishes and magical thinking. But it can be helped by someone loving simply listening to how difficult it all is.
Best wishes to you.
Thank you for being such a caring and conscientious niece. Your aunt is fortunate to have you in her corner.
My aunt, as far as I know is still home and in desperate need to be in one.
Pat yourself on the back.
As others have pointed out you are feeling grief and this is natural and normal. I don't know anyone who looks forward to going into a facility but it is often the *best* and *only* solution -- as "...everyone from family to a host of doctors - have been trying to convince her move to AL (for years now). Her house is way too much to maintain and has constant problems. She doesn't drive anymore because several years ago, she drove through a restaurant... The list goes on and on." Keep rereading this line in the moments you forgot why she's in there.
I wish you peace in your heart as you support her and grieve this change.
In my humble opinion, If your aunt does not have dementia, she has been tone deaf as to her expectations of you. That is selfish and not fair. She should have realized the level of care she needs and should have been the one to decide to go to AL and not have to be placed by her family..
I know after what I've gone through with my parents, I will not expect my daughter to have to give up her life to be my caregiver. I will be voluntarily going into AL or a LTC.
You played the hand you were dealt, you are doing the best you can. You are not abandoning your aunt. It will be better because now you can be a family member and visit and spend time with her and not be a caregiver.
Some may not agree or would do things differently but you have done the due diligence that has led to the decision and do not waiver from your decision because it is for the best.
Allow yourself to grieve (no guilt because you did not cause this situation) and then move forward and lovingly visit with her when you can. It is a difficult road to navigate but this forum has a wealth of knowledge. Best of Luck.