How to Cope with Guilt

soycappuccino

Background - I am a remote caregiver. I live short plane ride away but on a different island than my parents. My mom was diagnosed with vascular dementia in 2016 (7 years) ago and she is in stage 6. She lives with my dad and they're both in their 80's. I am married with two kids. I have my onw business and volunteer on two boards. I have two brothers who live thousands of miles away. They have the luxury not to deal with this on a frequent basis.

What I struggle with most these days is guilt, anger, and depression/anxiety. My dad has been in denial about my mom's condition throughout and insists he can care for her on his own. (He also thinks putting my mom on a special diet will reverse her condition.) He downplays her condition and doesn't appreciate the type of care and supervision that she now requires because of it. I could go on and on with examples of this (over feeding her, not brushing her teeth, leaving her unsupervised, not administering medicine properly, etc). It leads to a lot of frustrating conversations and has led me to distance myself to a degree to maintain my sanity and sort of let go of what I can't control. I have never felt close to my dad. This situation has not helped.

I fly over to see them every 2-3 weeks. They have caregivers who go over every day to help support my dad and give me some peace of mind that someone is checking on them. Usually it's just me flying over for the day to check-in, redo her daily medicine boxes, take her to the doctor, and do any TO DO's my dad has for me. Going over for the day is about all I can manage. When we go over as a family, we don't stay with them anymore, because it's too difficult to see all the things that he's not doing for her.

I don't feel they should be living on their own, but my dad won't budge or he says it's up to my mom (!!). He relies on me for many things and tries to do many things on his own that he shouldn't. I feel anxiety and depression since there's no good resolution. I feel guilty that I'm not doing enough and yet I also feel that I can't do more. I feel pressure like "people" (some of my Chinese relatives) think I should uproot my life to be there 24/7. When I think about my parents, the frustration I feel in interacting with my dad and his attempts at caregiving clouds what should be feelings of tenderness and concern - I feel an IMMENSE amount of guilt about that.

Does it just continue like this until they pass away? It's hard for me to remember what my mom was like before this condition took over - it's like I lost her but I can't mourn the loss of who she was. The idea of having these lingering years, with all this overwhelming sadness and frustration, be the final memories of our time together sounds awful. Worse still, when I'm feeling low because of it, it affects the rest of my life including my relationship with my husband and kids.

How do others cope?

jfkoc

First off I would tell you that you are suffering from grief. The thing about grief is that it is its own entity and does what it pleases and comes with loss be it slow or final. You are losing your parents. It is a great loss no matter when or how. That is what you must wrap your head around.

Are these the years that you will remember? Of course but they will only be a part of what you remember. Please continue to do what you are doing keeping in mind that your parents are bound at the hip and getting through this. Perhaps not the way you want them to but they are making it. Love them, hug them do what you can to help while understanding that they are going to do things pretty much their way. That y ou must accept. The day may come when you can and will make an intervention, Until then forget the teeth brushing and the over eating. If you can't forget the food you might make some casseroles , freeze and put in a Yetti and take them on the plane with you or cook while you are there and freeze.

Mostly enjoy being with your parents as much as possible. Make your time valuable to their mental health knowing that they and not you are in control. I do not mean to dismiss your position but do chose your battles wisely and work in the background as much as possible.

Guilt???? What for???? You are a great daughter doing what is possible!

Please keep us in the loop!

-Judith

korbkelly

Hi there!
I'm sort of in the same boat. I live far away from my parents and wish I could be around more to help them. But on the other hand...it would be too difficult for me.
We must remember to take care of ourselves, whatever that may look like.

mlakoume

Same boat. Immense giiit and sadness. Finally managed to get a caregiver in who my mother, who has Alzheimer’s, wants to kick out. She is killing my 89 year old father little by little every day. I dream of quitting my job and going to live with them. But I have a husband and a job. Immense guilt.

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Jo C.

I wonder if your father may possibly have begun to have his own changes within his brain which may explain his lack of reasoning, judgment, logic and ability to see and process things as they really are. I wonder if he has seen his doctor lately? If he can be convinced to see his own doctor; you can send the doctor a confidential list of problem issues re changes in his cognition, reasoning, judgment, his behaviors and the inability to process and understand such matters as they really are. If he too has early onset of dementia that leaves one scrambling for a different way to manage things. I do not know if you are in the U.S., but if so, perhaps seeing an Elder Law Attorney in your parents state would be helpful in knowing legally, what steps you could take to set things to rights. If your father lacks competence to format your mother's care and carry it out, you could ask an attorney about applying for Guardianship of your mother which would give you control over her care.

Actually, if he is withholding medication and leaving her unsupervised which is dangerous; then that technically falls under the heading of Elder Neglect/Abuse statutes in most states even if he does not mean to do that. That is something to think about if you wish to take concrete steps to curb this by legally forcing change. That is hard to do; but it is something to think about.

That all being said, Jfkoc gives some great input; perhaps letting things go that you cannot control and following her suggestions that you can, would be helpful.

As for guilt, I hope that can be left behind. No guilt; you are a very caring daughter caught in a very difficult place without power to make changes at this point. Rather than guilt; perhaps regret would be more accurate; you cannot do any more than you are. As for the cultural relatives, do not give them space in your head; best to not give them much if any information at all; they cannot chew on anything if you do not feed them information. If they call and badger you; use a fiblet; someone is at the door, a pot is boiling, or whatever and hang up the phone. You also do not have to answer the phone and let it go to voice mail . Just keep your head above water without their trying to guilt you into things they want you to do which are in opposition to reality. I learned this the hard way. My giving my Loved One's adult siblings information (they lived out of state), only caused upheaval; I stopped giving any information and no details at all. Politely said all was okay and nothing had changed.

I send best wishes your way and so hope that there will be a way to have this work out better; let us know how you are, we will be thinking of you.

J.