I thought I had gotten through the anger phase of dealing with my Mom's memory issues, and had moved on to acceptance. It seems that I am angry and frustrated again as her memory gets worse. My brother is no help and my sister has the outgoing empathy of a stone, even after I've repeatedly asked her to call me back more, even if just to troubleshoot or ask how I'm doing. I moved back in w my mom a few years ago bc of boyfriend problems, but also bc she was lonely. My mom stopped doing for herself, and stopped going out to the bus and taking herself places and everything else since I came here. I feel like my sister probably assumes that my mother is not doing so well because she stopped doing all of those things, because I was here to drive her etc. Either way, my sister has never been that open to being emotionally supportive. I, on the other hand, am very sensitive, and I am taking every single thing that my mom says nastily as a problem. Since most of what she says is mostly the way she's always talked to me, I have a hard time separating these memory problem-related things from what she would normally say anyway. I am scared and I feel alone as she gets worse. I want to be nice and caring and soothing to her and I'm not. I am defensive about every little thing she says.
I'd like to point out that there are thousands of people caregiving their parents who never show up on AgingCare. I think it is fair to assume that people having difficulties are more apt to show up here than people who are having smooth sailing.
Of course, many people have no siblings, which presents a different set of stresses.
And I'll add that some people are very lucky to have sisters like mine. The four of us cooperate in taking care of Mother. We email each other after every visit and we discuss all issues openly. We don't always agree, but we always put her best interests first (as we see them). Maybe it helps that there is absolutely nothing to inherit. :-}
Anyway, very good generalizations, GA.
I was feeling short tempered and burnt
out last week. I took a day for myself Saturday
and met a girlfriend
for window shopping and lunch.
Heaven!! I feel refreshed and was
nicer to mom and dad today.
I even had more energy to do mom's
grocery shopping that requires
three different stops because she is
so picky and only likes certain things.
Jinx offers good observations, especially viewing your mother as a rescue dog, and using mental gymnastics. And Jeanne as always offers insight from her own experience. Heed their advice. And remember that even though words hurt and cause emotional pain, learn to build a thicker skin and think of that rescue dog image every time she says something nasty.
After she's gone, you'll still have a life to live, your own way. Ashlynne is a good example of this.
1. There's a sibling who is willing to make the sacrifices while other siblings are either nonparticipatory, or help infrequently, and often while seeing $$$$$$ at the end of life.
2. The caregiving sibling sooner or later begins to lose perspective of being an independent person and sees her/himself as an adjunct of caring for an parent. Identity as a person begins to fade.
3. The caregiving sibling falls more and more into the trap of being overwhelmed, angry, frustrated, depressed, less healthy, and probably is prey to other undesirable conditions.
4. It's like a whirlpool, sucking the caregiver in, with no apparent way out.
5. So, what's the solution, if there is one? There isn't an ideal one; I think it's a delicate balance of what others mention so frequently - drawing a line in the sand, establishing boundaries, finding a life during this "interim" phase, and recognizing that a lot of compromises are going to be made, but (and this is an important but), there are ways to create balances, albeit difficult.
I try to think what it might be like being in combat; I think of my father's service in WWII. To me, combat is far worse than caregiving. Soldiers have the benefit of training and preparation, as well as support from their comrades in arms and the military community. We don't - we learn as we go. I'm still struggling through caregiving boot camp!
Sometimes I think I should get some military training manuals to read and see if I can toughen myself up.
6. But back to caregiving....First are the boundaries; establish what you will do and what you won't do. And be firm. Don't let guilt, intimidation, harassment, rude behavior or anything but emergencies and common sense change the guidelines you've established.
7. Be adamant in setting aside time for yourself to recharge your emotional batteries. If you can include your parents, so much the better. But don't give up that private time.
8. The problem in this arises I think when the parents need 24/7 care, and there are no funds to pay for this. It's at this point that I think it's realistic to recognize your (and mine as I don't exclude myself from this rough journey) limitations, apply for Medicaid if necessary and find a good, safe, caring facility for your parent. The companion aspect though is that the parent has a negative image of a facility and resists going. That's another challenge in and of itself, one I haven't conquered.
9. But then guilt rears its ugly head again, making you feel as if you're neglecting your parent, not doing your duty, and other negative thoughts which unsettle you and the decisions you've just made. Remember that you can provide the best care by searching for the best solutions under the circumstances, not by providing all that care yourself, or by sliding down the steep slope toward ill health by trying to do so.
10. Recognize that you're not going to get any help from some siblings; document their lack of participation in the event they try to claim otherwise later and create a stir or challenge your own role and competency. Then, remember that they're not going to help, so learn to let it go. It only drags you down emotionally and creates negative emotions and hostility.
11. Learn to be less defensive about negative comments from your parent. They might be a reflection of the parent's personality but also a frustration from the awful condition in which they find themselves...sliding toward old age, losing physical and mental abilities, scared, angry, reliant on others.
12. Put yourself in your parent's situation. How would you feel? And maybe the frustration we feel when we reach the stage Joanne's at now is exactly how we would feel - we're just in a different position of frustration.
13. If you don't have time to get out, use the Internet to help you find forums on topics you've enjoyed. Even vicarious participation helps change a mental focus. I have my gardening forums and just recently discovered a backpacking forum. Even though I only used to hike, the adventures of backpackers and the incredibly beautiful photos they share take me out of the caregiving world and back into the restorative world of nature.
When I saw what dementia was doing to my sweet husband, I was angry. This mechanical engineer whose perception of depth and whose visuospatial skills were superb now can't figure out how to fit himself in the bed? Has to be guided so his feet don't hang over the edge? How could that not make me MAD? This hard-working man who loved, loved, loved his little sports car now couldn't drive? He was angry and I was angry for him.
I don't think it is the anger so much that is the problem. It is knowing where to direct it. My husband wasn't the enemy. He sure didn't ask for this to happen to him. Your mother isn't the enemy. Dementia is the enemy and is worthy of a lot of anger!
First, let go of any expectation regarding your sister and brother. They are who they are. They aren't likely to change for you. You've done the right thing in asking for what you want from them -- phone calls, for example. You've made your move, but don't waste energy expecting them to interact.
Mother has always talked nasty to you. Yet when you were in a spot of emotional trouble, she is the one you turned to. You must have had some kind of bond there. It would be natural for you to hope that while you were giving each other mutual help she would mellow out and not be so nasty. And sometimes it does happen that way. But not usually. And not with dementia added to the mix.
So in addition to giving up your expectations of your siblings, I'm afraid you are going to have to adjust your hopes about your relationship with your mother.
Wow. That is a lot of giving up to do. You are scared and lonely. You are sensitive. You really want to be nice to this woman you love and sometimes you are not. That makes you feel guilty. Argh! This is not what you hoped for when you moved home.
I think you deserve some counseling. Let a trained, objective third party help you sort out your emotions and figure out what to do with them.
And you also deserve some respite -- some time off from being the caregiver. (Don't expect to get this respite from your family.)
Come here and vent often. Express your anger here, and not to your mother. We understand!
One thing we know, Joanne: Dementia gets worse. Always. Get some help for yourself now ... this aint gonna get easier.
Can you get out at all these days? Can you find a caregivers support group to go to? Your sister may love you, and be a great person in many ways, but like my sister, she may not "do" compassion. She actually said that to me! But there are lots of other people in the world who love "doing" compassion. You have a better chance of finding it in someone who is not your sister. You certainly need and deserve a lot more support.
To be a nicer person, and to be the kind of person you want to be, you need to practice detaching with love. Maybe you can play "Dysfunctional Family Bingo" to take the sting out of her nasty remarks. Before you go to bed, write down a list of the nasty things she says most days. In the morning, "check off" each one that she says. Instead of being hurt by them, you earn a point for each one! Google it. It's mental gymnastics, but it can help.
Mom is kind of a bad person, but she's also pretty darn pitiful these days, isn't she? Can you picture her as a rescue dog from an abusive home? She growls and snaps because she never got the proper training. Feel the bite, then remember how little power she has left, step back, and be the compassionate person you want to be.
Give yourself credit EVERY time you succeed, and forgive yourself with love every time you slip.