I can't walk on eggshells anymore. What do I do?
Mom has been ill for 10 years now. It began with heart failure, then dementia (still undiagnosed) though doctor says that she “sundowns”! I think they don’t want to diagnose it. I don’t take her to doctor … not strong enough physically so my brother does. He tells me nothing and now she rarely goes to the doctor. A nurse practitioner came in once a month, but she kicked her out too. Something is wrong with just about everyone. Her “dementia” has been obvious to me for at least three years. It has gotten worse and the whole time she has been agitated, angry, and says hurtful things. She did not want antidepressants, but is on a benzo (relaxation drug) for mornings. Very low dose and it helps for that time of day. She is ill and my denial takes the form of trying to reason with her. Yesterday is an example of how I get confused. I called and asked IF she had eaten the food I sent over. I cook, freeze in one meal containers. I had made a favorite of her (took 4 hours and I hate to cook!). She had ranted and raved over how much she loved it. Soo .. thinking I might cook it again, I called and asked if she had eaten it. She got furious. She said: stop asking me and don’t cook for me anymore. And why are you so persistent? Then, today is her 90th Birthday. Yesterday I called to ask if she would like to go out today? And she got really angry. “why would I want to celebrate my birthday? Do you like to?” …. All in such an angry tone of voice. She continued to berate me till I put the phone down. Yep. I hung up. I feel like I cant do this any longer. She has refused every caretaker and doctor access. She was never this way. I love her but it is affecting me to where I dread this.
Your mother wasn't like this before (thank heavens!) but over the last three years you suspect she is exhibiting dementia. Dementia involves damage to the brain. (Different kinds of dementia involve different kinds and locations of the damage.) Dementia progresses ... it gets worse.
The mantra that helped my patience quota was, "This is not my husband speaking. This is the dementia." Maybe that is easier to do if you actually have a medical confirmation of the diagnosis. I don't know why some doctors are so reluctant to give that diagnosis. Her doctor says she "sundowns." Well, sundowning is a characteristic of dementia. So if it helps any, you can go forward knowing her doctor has stated (in a roundabout way) that she has dementia.
Feel free to read material that is widely available on dementia and particularly how to deal with many aspects of it. Watch some Teepa Snow videos on youtube. Read articles and posts on this this site regarding dementia. Once you are out of denial you MIGHT be able to cope more easily. Or maybe not. Dementia in a loved one is extremely challenging to cope with. But it is worth a try.
Since dementia gets worse, it will progress to the point where mother is not safe to live alone. (Possibly it is there already, if she is not eating regularly and refuses help.) It may take a crisis to be able to do anything about this. Often a fall and injury is what puts a loved one in an emergency room or hospital. Take advantage of this to get an evaluation done, and point out to the discharge people that mother lives alone although she can no longer manage her own care.
One approach to preserve your own sanity is to detach more from your mother. Don't call as often. Talk only about inconsequential subjects. But because your mother was not like this before, perhaps for "old times' sake" and for the fact that you do love her, you could continue to interact with her and keep an eye on her health, while saving your sanity by reminding yourself that this is not mother's fault. No one would choose to have dementia! No one would choose to be anxious and angry all the time.
And most definitely, whatever else you do, remember that this is Not Your Fault. Regret, sadness, even despair might be appropriate at times, but guilt should never be part of the picture. It just makes it harder to cope and it is entirely inappropriate to the circumstances.
Keep in touch here, and let us know how you are handling things. Many of us have been in shoes extremely similar to yours!
My Mom didn't like it that she couldn't hop in the car, nor have Dad drive her, to the stores for shopping. She didn't like it that all her siblings and best friends had passed on. She didn't like all her aches and pains. Mom was losing her eyesight and had lost most of her hearing. I would be upset and very grumpy, too, if that was me.
I tried to get my Mom interested in Independent Living thinking being around people more in her own generation would help, plus the activites, plus having 1 or 3 meals prepared in a restaurant like setting. Plus weekly linen service, weekly housekeeping, etc. Heck, I was ready to sign up it looked so good :)
My Mom refused. It was until she passed that two weeks later Dad wanted to pack up the house and move to Independent Living. He loved it there, was happy as a clam :)
So:
You can go with her and your brother to the doctor for correct meds--and it can take a while to get them sorted correctly, and
you can get on your knees and thank God that she is not living in your house. You have no idea how luck you are that you had the freedom to hang up.
Hang up and rejoice! Twirl around the living room. You have freedom!
Then, you can begin to work on your mother: getting her to a doctor who will SO SOMETHING besides yammer about "sundowning." I've had
that kind of NON-care! Find somebody who really will help you, because it seems like your mother needs a lot of help! She needs more medical care than she's getting now, and maybe she needs to be where she can be given regular care: if not by you (and I don't think you should), then you need to be thinking about a residential facility.
Good luck! You have a tough row to hoe, but I think you are good to be assertive and hang up on her when she becomes impossible to deal with. The fact that you have to do that shows she needs more care than you (or any child) can provide. So don't be hesitant to seek it.
I have contacted her doctor but they are not allowed to tell me anything. I cannot, will not, remove my help from her despite him. She will not accept in home care by anyone AND she has not been declared incompetent. So, I guess I must just deal with it.
Yes, I do get off the phone and away from her when I must keep my sanity. I do feel guilty for doing this, but I know I have to save myself. She usually forgets, anyway. I know that if she knew how she treats me and others, she would cringe. She was always a very lovely and loving mother and I cherish my memories.
The question is HOW will I keep those memories separate and compartmentalize them when the time comes. I have sort of half-said goodbye to her, if you understand what I mean. I hope that, someday, I will have the good memories of her when she was healthy physically and mentally ... at times it is hard to remember.
First, your mom used to be a loving mom and lovely lady, which makes it clear that she's not herself now. You can definitely tell your mom isn't mistreating you, I think it's in part dementia and in part a normal fed-up state in life, because people can get literally fed up and tired from living in suffering and with truncated capabilities. It might happen to you and to me! But at least you KNOW that's not your mother, it's a person that's unhappy, old, tired and Ill, who you love and who needs you.
Second, you get to care for your mom...from the distance!! Wow, that's a privilege. That makes you free of guilt yet allows you to be responsible; yes, hanging up probably feels bad at the moment but it's a wonderful thing to be able to stop the pain -yours- yet not fail as a daughter.
Third, you're NOT alone! Yes, your brother might not do what you wish he did, but he's there, and he wants to be, if not he would not have taken the responsibility. You've no idea what it is to be the only soul responsible for the care of someone and the toll it takes on you, physically, emotionally, financially, your life!! Literally. I don't mean to undermine your situation at all, it's just that sometimes when we are too involved in a problem we miss all the bright sides to it.
As advice, I'd do two things. One, is to have a heart to heart conversation with your brother, never criticizing him (remember care taking is hard and we all try to do our best) but explaining how you feel and that it'd help a lot your wellbeing if he could share with you a little more and don't forget a "please, it'd mean so much for me", and also ask him how else he thinks you could help your mom and him, he might respond to that if he's a control freak, as you're offering help according to his needs. You know him, do what you think will get him to respond as you need him to.
Lastly I'd suggest to ask yourself what could you do differently? Meaning that maybe your mom would appreciate much more a visit of one hour from you instead of the four hours you spent making the dish for her; most elderly people feel alone and being alone and sick is a horrible and depressing combination. I struggle with that too, but try to remind myself that I've to think of what she really needs, not what I think I should do. Changing your way of caring for her might really with time help her feel more taken care of how and in the areas she needs it the most. Even with dementia a person feels better when true needs are being met (mostly emotional needs); in return her mood, aside from the illness might improve.
Hope that makes sense and a hug and best of luck to you!!
My mom also spent her final years in a parallel universe of less-than-ideal POA, refusing medical care, spotty reasoning, and distressing personality changes. You bet your butt you're half-grieving now.
It's hard to feel like you're doing enough, when she won't let you do anything that's your idea. Self-preservation is key.
You're on the right track -- despite how difficult she & brother make it for you to realize that.
Gotta ask: Does brother have his eye on an inheritance? (Even if it's an amount that you & he would split evenly.) Because proper care for a person with mom's needs would burn thru that while she's still alive. Is this why he's so cagey and secretive? Or maybe mom is martyring herself so the $ will be there when she's gone?
Just what you need -- more faulty logic. But it happens. Perhaps money is coloring this sad scenario.......?
My heart goes out to you---I am in a similar situation. SO GLAD mother doesn't live with me, lives with brother, who, like yours, keeps mother's health concerns under lock and key. I have had to get really in his face at times to tell me what is going on. I suspected dementia, about a year or more ago and he disagreed---finally I guess I wore him down. Told me mother's kidneys and liver are "terrible"--and no doubt there is some dementia--she's nearly 87 and this isn't shocking to me, but I hate the attitude of secrecy. He is also a control freak and I finally found out WHY he won't even CONSIDER an ALF for mother--it would cost all she has and leave zero to inherit. There's 5 of us who are supposed to inherit--and she has almost nothing saved and one very small life ins policy. He NEEDS to inherit something besides her hoard. Perhaps this is also your brother's case.
You can walk away. You can curtail the phone calls. I never call my mother, I visit her once a week and do what little she'll allow me to, as far as cleaning or organizing. I talk to her and let her ramble on about people I don't know and what she is up to (Bingo, usually) She changes out every story, can't remember anything--but I know this is the dementia working and I don't let it get to me. Actually, she's a LOT nicer since her memory stopped really "working".
I hate to say this, it sounds cruel, but take a break for a while. I mean, make sure she's OK, but don't try to have the old relationship you had with her now. She's not that person anymore. You can grieve for the "old mom" but sounds like she isn't there anymore. When mother gets nasty with me, I give myself a two week timeout. She doesn't know my phone number, (38 years, same #, never bothered to learn it, so that's telling. right?) so she doesn't call me.
I know it hurts. I know you want the old mom back. I get it, as do so many who have replied. But, this is life and people get old and we have to come to terms with it, for our sakes and theirs.
Try not to take her anger personally. I'm sure it's not. Just hang on to the memories that are good.
Most of all--take care of yourself. Sounds like mom is living in her own world, and you're not really a part of it. That hurts, I know, but don't look to her to be the mom you used to have--she's just not capable of it.
Sometimes, I pretend that I am an actor. This technique enables me to be someone else in difficult situations. Not always easy to do, but give it a try.
Often, adult children feel the need to rescue their mother/father from difficult situations. But sometimes, we, as adult children, cannot rescue them from themselves and we must step back after we try everything possible. Then we need to acknowledge that only professionals can help our parents.
You are in a difficult position and my heart goes out to you.
I feel for you as well. You received great advice so I really have nothing much to add except that I have learned by hugging my 91 year old Mom who has dementia (she lives with me and I am her only caregiver) makes a big difference! My Mom puts a smile on her face after I hug her and kiss her cheeks. I feel human touch is so important.
My Mom's brain is broken and I know she feels lost within herself and has a hard time trying to express what she is feeling but I can see it on her face.
Also, I don't try to talk sense to her anymore because a few hours later she won't remember what I said and that's okay! I get it though I do miss my "old Mom" and our heart to heart talks.
I have learned to accept the dementia and I know it will only progress. I understand it's hard to accept. Make her favorite dishes because she will appreciate them even if the next day she won't remember. I make my Mom's favorite foods and my Mom will tell me she's not hungry but I put a small portion on a plate and say to her "Mom, you don't have to eat it"... (I take the pressure off of her by saying that). Guess what? She eats what I cook every time!
Keep posting as we are here to listen and help if we can.
Best to you! Jenna
Hmm. The script calls for her to play a dottering obnoxious old lady. She is giving an award-winning performance today! Let's see how I can do in my role as her caring and compassion daughter/nephew/sister/caregiver.
Thanks for the idea!