This is the question I need answered most. Why do my feelings and needs not count? My mother is living in my home with my husband and me. She needs EVERY meal fixed, laundry done, bathing assistance, help walking from room to room, multiple rides to dr. appts, wound bandage changes, commode emptying. I'm in the process of setting up CDPAP and have a friend who is a home health aid and is willing to help. "But why do you need help?, are you saying that I'm a burden? I knew you would say that." "You can leave the house any time you want." (Yes if it is important and then only for a couple hrs at most between meals.) No more weekend getaways or real vacations. She lived as a hermit, so I guess why would she think that I need time outside the home. I actually have a few friends and like to do things.
She lays in bed 20 hrs a day, comes out for meals and evenings to watch TV with us.
She ignores health problems until they become a crisis, is abnormally afraid of Drs. and treatments. Which is why she is like she is.
I am setting things up, physical therapy, CDPAP and encouraging exercise, so maybe just maybe I won't feel resentful that my life has been overtaken and I can go out without feeling guilty.
She balks at everything cuz if its not her idea its not necessary. And then my heart rate goes out of control.
Sorry for the rant.
I have read Elaine’s posts for awhile. I must tell you that I have never once read of her insinuating that she was ever interested in her mother’s money or as you put it, “entitled to her assets”, so why would you even accuse her of that or even bring it up? That doesn’t make sense to speculate or insult someone.
The only thing she has ever expressed is her mother having enough money for herself.
Sometimes I’ve had difficulty shaking things off. I’m working on it though.
I relate. Only, I am unmarried and have no one at all to help or even talk to, unless I call a best friend (and I'm sure she's sick of my complaining).
Your Mom and mine have lots in common. The one thing that struck me is the fact that your Mom stays in bed 20 hours a day. So does mine. I asked a hospice nurse what I should do when she sleeps so much. He said, "Let her sleep." FINE!!!!! A rest for me!
You have way more physical demands put on you than I do. So far, my Mom dresses herself, showers herself, walks by herself, and toilets where she should (although not as neatly as I would prefer!).
My Mom just turned 100! The one thing you and I have in common is our Moms' fear of our leaving the house. When I have to go to the market or to the doctor, I tell her -- but due to her dementia, she'll forget -- so I leave a note where I am and about what time I'll be back. If I get into a conversation with someone (anyone, anyplace who is a sane adult!), and I'm late, my Mom calls me to find out where I am and when I'll be home. It's routine now.
I wonder if the self-centeredness is caused by the dementia. I've noticed it for years and it gets worse.
She has no life and I have no life. Why does she go on and on?
My mother didn’t have a clue how hard it was to be a full time caregiver. She didn’t care for her parents. They were independent until they died.
I hate mind games and playing the guilt card or trying to shame us! Most times all of that stuff backfires once the children start to see their behavior for what it is and set boundaries.
It sounds like you have already done so much. Please don’t forget yourself in all of this. I wish I had come to this point sooner. Both the caregiver and the patient benefit when the caregiver is in a healthier state of mind .
I wish you as much peace and contentment as is possible as you move forward.
Mom needs reassurances that, even tho she is a pain, she will be okay and that she needs to appreciate what you are doing for her. Easier said than done, I know. But persevere and be constant in your "me" activities. Give it some time, just be stubborn about it. Some Mom's have an inordinate capacity for guilt laying. Good luck.
When I finally listened to my doctors and blocked off some time for myself, a few things happened. First, the loved one I was caring for got angry with me for taking time away from her to rest, but I persevered. I told her that I was getting sicker and sicker and that I had to take time off to rest. She wasn’t happy and maybe didn’t care that I was ill but that didn’t matter. What mattered was that I cared and had to keep taking care of myself. It was working and I was getting stronger. The next thing was the crushing guilt for taking care of myself. She was unhappy with me and started acting out (pulling out all the cables from the back of the TV every time I went to rest). It got really hairy there for awhile but I persevered. I remember thinking, “How can this be right? Whenever I take care of me she’s miserable but I kept taking care of myself anyway.
I didn’t realize how hard it was going to be to focus on my life and my welfare. I didn’t think I had the right. Eventually I realized if I didn’t care enough about me, why would anyone else? It was up to me to care about me.
Hope this helps and good luck.
Theresa
Three things I've learned from this looking back as mom died 5 months ago. One they have a difficult time letting go of their independence. They still want to be in control of their life. Declining health just doesn't allow for that. Your mom is losing control of her life. You do all the cooking, cleaning, laundry and management of her other affairs.The only control she has left is to control you by laying a guilt trip on you.
Second, being so stressed out taking care of mom didn't allow me to think clearly. I would of started to take care of myself emotionally a lot sooner before caregiver burnout surfaced. Get as much help as you can. I finally hired a part time service for caregiving. Mom didn't say boo about it. I think she actually liked seeing someone else in the house besides me.
Bottom line, it's your house, you make the rules. If mom doesn't like it then maybe it's time to consider other living arrangements for her.
The third, I wish I would of ignored half the things my mom said and did. I know it's easier said than done. Take the bull by the horns and do what you have to do whether mom likes it or not. She'll get over it. I was like you feeling my heart ready to jump out of my chest. One day out of frustration I said to my mom, "mom your going to give me a heart attack, her reply was "your too young for that". I didn't know if I should laugh or cry. You'll never be able to change your mom but you certainly can change the way you react to her.
I wish the best to you. I know how hard it is being a caregiver especially when it seems like there is no end in sight. Think about being a daughter again and not the primary caregiver.
This happened with my mom too.
My suggestion is to tell her enough is enough. Tell her it is affecting your health physically and mentally. Tell her you want to be her daughter again and not her caregiver. Give her the choice of being involved in picking out an assisted living facility or letting you make the decision on your own.
I know it doesn't feel like it, but you do have control over this situation. You just have to park the guilt somewhere. Once you remove the guilt from the equation the decisions become obvious.
I wish you well.
Her pitting my siblings against each other was the final straw. It was hard enough to take her criticism, let alone theirs when they truly had no room to criticize.
Mom no longer lives here. Will take time to heal completely but I will.
I write from the patients perspective. I was diagnosed with early onset ALZ 3 1/2 yrs ago and I hope you find my comments helpful. I have given this same advice to my DW and adult and minor children.
I am no longer able to work professionally any longer. I do receive SSI. I look at my job now as being in the role of doing everything I am still capable of doing. I can run errands, pick up stamps at the Post Office, shop for simple groceries, make lunches for my DW and daughter as they head off for their day. I am still able to wash dishes and put them away. I no longer cook when I am home alone while my DW and daughter are at work and school. Voluntarily I no longer drive outside of the town we live in. I'm just not comfortable venturing out on my own.
What I would recommend you do, is respectfully set limits with your mother about what you are willing and able to do. I would put an end to caving in to her every request.
Right now, your responsibility is to your DH, the two of you are entitled to share time and experience things that you would like to do while you still have the time to physically accomplish those goals. Travel, share time with friends, read a book or go to the movies. Sounds to me like it is time to move mom out and in to AL or memory care.
I have had the hard conversation with my DW and children about what I want for them. When it is time for me to go in to Memory Care, I want to be placed 100mi away from where we live. I want my DW and children to continue making their way in the world. I am 60, my DW is in her early 50's. I want it to be inconvenient for them to visit me, so they don't have to spend endless time with me who probably won't know who they are or what is going on in the world. We've had a great marriage, traveled throughout the world with our children, practiced our faith, volunteered in the community and enjoy life.
I would encourage you and your DH to set up your estate if you haven't. Prepare POA's, Medical Directives and Pour over Wills, and plans for your funerals. We were in the process of doing all of this when I was diagnosed. The legalese has been done for 3 yrs. We're going to tweak a few things with more detailed instructions on some wishes.
We enjoy everyday we have together and there is very little stress in our home. Perhaps you've done these things for yourselves, if not, please consider doing, so you can lighten the load for yourselves. I am sending up some prayers for all of you. I hope this is helpful. God Bless.
I have to comment on debbiesdaz response - My mom chose to have children and that does not obligate me to a life long debt to be paid to her. I have an aunt who ran herself into the ground taking care of her parents. People can live for years and years and years needing back breaking 24 hr care. Everyone is not obligated to provide that to their parents because they were born!
You might feel it is a child's duty to take care of parents....under any and all circumstances, and that's your decision to do so. But please don't judge others who happen to feel differently. I for one would NEVER care for my mom.....nor would I ever expect my children to care for me.
However, like when parents became happy when their kids grown so they can do what they want, when they want, if they want, they should realize their grown kids need time for themselves, and if they got kids themselves, raising kids and helping elderly is extremely tough, especially when kids not grown or may be grown but with special needs comes first, and they are not getting attention needed because grandparent or who have you getting the attention when childhood and teens years are only for 18 years of life.
My thoughts anyway.
I will say that my dad does get an aide three times a week ,and is receptive to any services that would assistance in his care and my well being.
When I have my own affairs or my son's to tend to thankfully I have an aunt who will come given advance notice of course and stay with my dad.I wont let my well being or my son's suffer while carrying for my dad.
I also have me time once a month for my own sanity.We shouldn't feel guilty with wanting to do the same.As well as getting any additional help you need.When your mom says why you need help just say everybody does sometimes and you want the best care for her.Goodluck
In my case I have finally arranged for assisted living for my mother. Move in is next week and can’t come soon enough! If my mother is awake, she constantly needs something so I am up and down all day and sometimes all night. She stays in bed all day thinking. She doesn’t watch tv, read or have any hobbies. I’m hoping she will participate in the activities at the AL and make some friends.
I learned something new that could be helpful to some of you if you were the spouse of a military person. There is a stipend available to help with AL costs. I am going to check it out for my mother. I don’t know any more than this now but you can search veteran spouse benefits for assisted living or contact your local VA representative.
Learn to "shrug" and try to ignore. You can't change your mother, so stop trying and just don't let her change you.
Good time for the Serenity Prayer.
I've been having problems with a lot of pain in my right leg (it's the one I brace on when I get her out of bed). When she asks me what's wrong, and I tell her my leg is bothering me, she launches into a 20-minute spiel on how HER legs hurt HER (her pain is always worse than mine, naturally).
If she hollers for me and I'm conducting business on the phone (or even talking to a friend), she says, "You're on the phone AGAIN? Why?" If this happens while the CNA is here for her twice-weekly visits, she tells the CNA, "She's ALWAYS on the phone! I don't understand it!" She can't accept the fact that I actually like people, have friends, and enjoy my contact with the outside world, because she never did.
And when she needs something, she'll call for me repeatedly until I respond. I've tried telling her to call once, count to 30, and then try again if I don't immediately materialize (if it's an emergency, she has a call button she can push). She still won't do it, and thinks I'm ignoring her. She can't figure out that I may be busy with something that - horror of horrors - doesn't involve her.
I know that part of this is due to her previous solitary lifestyle, and the fact that she now has the self-centered attitude of the invalid. But that knowledge doesn't really help with the frustration of being treated like a machine that exists solely to serve her.
Fight that guilt as hard as you can. It's not your fault that she is the way she is - it's hers. It sounds like you're well on the way to regaining some freedom and independence. Keep at it. Best wishes.
I could not have said it any better than you did.
If she is unwilling to accept the boundaries you set in place....remember, your house, your rules....then the time has come to consider placement in a care facility. You can't spend the rest of your life feeling "guilty". Know that you did your best and restore your peace of mind.