I am really having a hard time trying to be my Mother's caregiver. Anyone else feel the same way?

Debsrockyroad - my opinion only - but your living situation has to change 1) your mother has Alzheimers - it is only going to get worse and worse 2) you are disabled - and as time progresses, you are NOT going to be able to adequately care for your mom, if this is not already the case 3) your marriage is strained and the strain will get worse over time - not better as your mom becomes more and more ill. She needs to be living in a place where the staff can care for her needs. You need to take care of yourself and your marriage. If your brothers don't want her to live with them, they can at least help find her a new place to live. Good luck - let us know how it goes for you

Deb, regardless of how your mom treated you, there is NO way that one human being can adequately care for an Alzheimer's payient without lots and lots of supplementary care.

Imo, eventually your mom is going to need a facility. It's going to be much easier if you move her earlier in the d isease process when she's got some ability to adjust.

This is not a " it's not what mom wants". This is a matter of your survival.

Debs i think youve inspired me to share a decision ive made recently so i wont hijack your message. I havent been close to mum for years (well she hasnt been close to me as i "chose" dad and not her in a divorce according to her) but very quickly found myself cargiving at a level that was going to impact my family and children dramatically. Ive decided to step back and let my my sister (who has no family) take the reins. Whatever level of caregiving your at,if its not working for you and putting extreme pressure on you and your family,please make changes for yourself. There are great aged care facilities available with the most fabulous individuals that are trained. Let go of the guilt. You arent letting her down xX

It may take a while to accept that your mom is not the way she used to be towards you. Sometimes it takes a long time to work through those feelings, however, in the meantime, you are disabled and trying to provide care for a dementia patient. I am healthy and yet I would not attempt it. It's very difficult and almost impossible for someone to do on their own, especially a disabled person. You may be setting yourself up for a lot of distress. I would either seek help, which would need to be several shifts of people to come in and help or find placement for her. Perhaps, if you can get out from under the strain of the caregiving, you will have the opportunity to explore your emotions and heal.

Deb, I totally relate. My mother does not have alzheimers (at least not that's been diagnosed yet) but she is a selfish, demanding, difficult woman and I resent having to take care of her. And I've become disabled recently (I have an arthritic foot that causes pain with every step I take), and my mother has absolutely no sympathy, and will not limit her demands in any way. And oh how it angers me to hear people say that I'm lucky to still have her around (she's 84). There is nothing lucky about having to take care of a difficult elderly parent, or anyone you don't have a good relationship with.

Deb, first of all I had to chuckle: who is this 'everyone' who says you should be glad she's still around etc.? Would those be the same people who had all those incredibly good reasons why they couldn't look after her, by any chance? Funny, that. Next time one of them comes up with an excuse, remember to sympathise and say "you poor thing, you must be desolated that you can't have Mother to stay."

Be reasonable with yourself. Think carefully about what you are going to be able to live with. Because, you see, the standard counsel would be to detach your emotions from the day-to-day caregiving, and look on your mother as an older person who needs help. But not everyone can do that, sometimes the baggage is too hard and too painful to let go; and if for you this is too much then it is time for the family to think again about your mother's care plan. You cannot be forced to take care of her in your home, not by anyone, no matter how pious they care to be about it.

Deb, I totally understand how you feel. My mother and I did not have a close relationship and was not close to my family because of my step father's issues. Their sons were considered their family and I always felt like an outsider. Now he has passed and the brothers are not involved. My mother is in a nursing home with dementia. I am the her POA and take care of needs emotionally. She calls me many times daily to say how much she misses me (even if I was just there). I have depression and deal with resentment. It's a horrible feeling.

Deb, This is probably a temporary solution and I suggest you look at nearby facilities as a backup plan. That is what I have done. My situation is complicated by having both parents to care for with very different needs. People mean well and say how lucky I am, too. They have no clue.

Debs, you are so not alone. Many of us on the group here feel like we're looking around, wondering how life got derailed like this. Usually it is because there was no one but us who could (or would) take responsibility. So we get stuck. If we keep caregiving, the stress can be bad. But if we stop caregiving, the guilt can be bad. Plus the cost can be so expensive. Many people can't afford it.

This group helps a lot, no matter what you decide to do. I know that having your mother shadowing you is very distressing. I would love to read of some ways to make a person with dementia less dependent. The shadowing would be very distressing if it were happening to me, so I know it has to be distressing for you.

The most important thing I've learned in caregiving is that I am as important as my parent in the relationship. If we spend all the time thinking about what is best for them and not considering ourselves, it won't work. We really have to stop to think what would work for everyone involved. Your husband and you should come first in your consideration. If it starts jeopardizing your marriage or your happiness, it is time to look for another solution that is good enough.

Wanted to add that people will tell us how lucky we are to still have our mothers. One time my mother and I were going through a cafeteria line. The woman behind me started hugging me around the waist and talking about how lucky I was. She had lost her mother a few months before. She hugged me some more. I thought she might cry about her mother, so I told her she could have mine.

Deb if you do nothing else STOP, get yourself a cuppa and sit down with your husband and discuss this properly. You clearly don't want to do the caregiving and that is perfectly all right. You don't have to be a caregiver (and anyone who knows me knows I have done it for 5 years and I am almost at the point of giving up purely due to lack of professional support). As for those who say you should be glad she is still around then they are sort of right - but that doesn't mean you have to be her caregiver . Spending quality time with your Mum and being a caregiver do not necessarily walk hand in hand, in my experience they rarely do. However you can still care about your Mum and if that means getting her into a facility then so be it. You care enough about her to see she is taken care of. You care enough about your direct family to put them first and if the siblings don't agree take her to them and leave her there - they will soon change their minds.

Get her into care take a break with your husband and devote time to each other YOU deserve that xxx

I am ambivalent about my mother. I love her a lot, but one day I can't stand her and the next I feel close and worried about her. She is narcissistic and mentally ill. When parents need a lot of caregiving from their aging children, and you are the sole available child (as in my case), it can take over one's life (its all I do). Yes, I resent it. Its very hard, also as my mother was not available to me my entire adult life, as she favored and was co-dependent with my brother. Any possible way to have your mother in a facility? Since you have brothers, would they contribute financially if your mother does not have the means? My siblings are disabled so they can't help. Is it time to look at the possibility of placing her somewhere to get your life back?

Deb, our stories are similar in that we had to care for a parent except mine was my father and I was single at the time. We went years without speaking much or even seeing one another because of how I felt about his preference of my sister and brother and I was just an afterthought. But, with years on my own to raise my family, my children now grown, my husband passed away, I tried marriage again and it didn't work so I decided to move away, sell my house and relocate somewhere new close to one of my siblings and start a new life. I went back to my old hometown after my mother passed and saw my dad sweeping out every memory of my mother out the door. I was disgusted about that and then I realized he was depressed about her passing. Somehow, somewhere during the 2 decades that I was gone, my hatred for him went away and I just felt sad for him. Deb, you can't resent the parent forever who didn't treat you well and sometimes you have to just let it drop and fade into the past. My dad thought he would enjoy doing what he wanted finally and I mentioned to him that he could come to live with me if his health wasn't up to par. He said no, he was just fine so I went back to my life and started the process of selling my house and moving away. Months later, he called and said, "if that offer still stands, I'd like to come live with you", and I was shocked but said get ready, sell what furn. you can and let me know when you're ready and I'll come get you. About a month later, he said he sold everything he could and come get him so I did. He was just beginning to show signs of mild dementia and I knew it would be ok for a few years. Making that decision changed my life immensely. I tried to stay the "single" person but soon, I found myself catering to him and his needs health wise. He lived 9 years more until COPD from smoking finally got to him. It was so strange, that was really the first time since I was a teen that we had a normal conversation, went to movies, went out to eat and watched TV together. If you decide that the resentment is finally gone, you might find you kinda like the old girl and want to do things with her like shopping, hair salorn, etc. It doesn't help anyone to keep remembering the resentment and feed upon it. Let it go. Most people will tell you that you are lucky to have your mother still. Mine passed when she was 62 and I was 41. I would give anything to have mine back again even for just a short while. It was a surprise for me because the doc thought she would come thru the surgery just fine but she started dropping at the last minute and it was over before we even realized it happened. So, enjoy what time you have left with her, do only what you want to do and leave the work to others. Once it's over, you won't have a bit of guilt that you did all you could to make her life as happy as you possibly could before it ended. Any person with Alzheimer's really needs to be in a facility where they are experienced to handle her disposition and care for her. Come visit often but leave it to the facility to provide the actual care. You can't change the past but you can change your attitude to the future. Tell yourself you won't be a victim again to the resentment and/or hatred and think about what needs to be done for her and to her. Help her get the Medicaid started if it isn't already and find a facility for her. There are a few good ones out there and check the BBB on the company who owns the facility. Make sure it treats people fairly and you will be fine. Kimber is correct, everything from this point on will be downhill with respect to your mom getting worse and soon she won't recognize you or even know you are there so do what you can now to acclimate her to the facility. She may not know you're doing it but you will feel better about what your do now than you'll ever know. Good luck, Deb. I hope all turns out great for you.

A poem for the bad times

When the dark times come and there seems to be no light
And you know the tunnel is long and fraught with pain
Feel blessed to be the one chosen to care but dont take fright
For your role is to care
When the words are so harsh, they drill into to your brain
Hold on to the belief you are doing your best
Stand tall when you look in to the bathroom mirror tonight
It is time for that rest
To care for a person is a humane thing to do
To ensure their health and welfare are safeguarded
But its not a role that you alone have to continue
PS you’re not fainthearted
The pain will go away, tears will stay close but love remains
The storms have come and gone, the floods at an end
They are in safe hands now and its time to relax
Rest peacefully my friend

Jude, what a beautiful poem. Who wrote it?

I did Niyah xxx and thank you

Jude, you are so talented with words! That was beautiful!

It is the very least I can do - to give something back to the wonderful people who support me through my dark days xxxxx but thanks Stacey xx

I can completely understand. I had three older brothers and I was the only girl. My dad left when I was 2, forcing my mother to go back to work full time to support us. My youngest brother molested me when I was 7 and when I finally had the courage to tell her, she turned her back on me. Never brought it up again. The abuse continued. I spent my life pretending everything was fine for everyone else's sake but mine. One day when I was much older, I had a blow out with my brother and told him I hated him for what he had done to me. His reaction was first denial, then he said that was what I wanted. Can you believe that?!?!? I was shaking so badly but I managed to call my mother at work and tell her what had just happened. She said she would deal with it. The next day she said we (my brother and I) needed to work things out or we both had to leave the house. So...with nowhere to go, I begged the landlord of my current boyfriend to let me stay with him. Thankfully he took pity on me and said yes. I was devasted feeling abandoned by my mother once again. Fast forward to now, she said she wanted to be with me instead of my brothers as they are useless and deep down she knew I would be the one that would truly take care of her. So now, I take care of her lymphatic leg and her dementia. It takes a toll on my ability to work, I have arthritis in my back and bursitus in my hips and am in pain everyday. I find it hard to deal with her for lengths of time as I still feel that resentment rearing it's head when she starts being difficult. She too favored my brothers when I was growing up and my abuser more than the rest. I finally had to kick the abuser off the property for constantly taking advantage of my mothers money and it has brought all my resentment back to the surface again. I pray someday to have peace in my life. Hang in there, you are not alone.

Oh, I forgot to add what a strain this puts on my marriage. It does in more ways you can imagine because ever since my husband and I agreed to be the caregivers, th abuser has come back into my world and gets me upset over and over therefore, affecting my marriage by rehashing the anger I felt towards my Mom for never sticking up for me and rewarding him instead. She has asked for my forgiveness but never seems to honour my requests to help keep him out of my life. So how do you take that request for forgiveness with sincerity? Hard to be the "good daughter" all the time when you feel like nobody respects your feelings and wishes after all these years and fully realizing the extent of the damage it caused and is still to this day.

Deb--I loved your question "anyone else feel this way?" Well, yeah, a few hundred at least!
Nobody can care for someone with Alz. alone and not suffer from the fallout. Well meaning people will think it's wonderful you have mother in your home--you feel supreme guilt because you know you don't want this--yet it's what you're doing--you don't want others to know how you REALLY feel--hon--you are NOT alone.
Some great advice. Start now to find ways to get some space from mom now and look into the future when you likely will have to let her go into a home.
I worked in Elder Care for a lady whose family had made the deathbed promise to their father that their mother could always live with them...what a drama. She had Parkinson's, which eventually will deteriorate into some kind of dementia. It was horrible to see this family torn to pieces by their "rash" promise and Mom out wandering the streets at night or trying to get out of the car on the freeway. It wore me out and I only worked 32 hours a week for her!
The guilt they felt as they placed her in the LOVELIEST ALF I have ever seen--she was actually MUCH happier there--she got to eat all day long and she enjoyed her visits with her family a lot more. Her health issues were not the problem of her family and she had tremendous end of life care. The family still feels guilty, but they should not. Take care of yourself first, and that may mean getting outside help or eventually placing mom. We all know that's hard. Actually, your relationship with your mom will probably be better when you don't have her living with you. I see my brother (mother lives with him) and he can barely speak civilly to her sometimes. My SIL doesn't talk to Mother at all. Put yourself first and let people say what they'll say--I get a ton of grief for what people think of my offhand "care" of my mother, but it's healthier for me not to spend much time with her.

Rainey I can't comment on how I feel for you it is incredibly distressing and I know that. What you do need to do is take back the control - I know that's easier said than done but you MUST do it. You certainly don't have to come into contact with your brother. If your Mum won't do anything about it then you must for your own sanity and for your marriage. You must tell her that the only way you can truly believe that means she is sorry is if she tells your brother he has to not visit when you are there - my personal view is that you report it to the authorities - I know you have a statute of limitations over there but anyone who has total disregard for people should be nowhere near your Mum.

Get help for the anger - it's not your husband's fault and you need to get your marriage stability back - if not he wins and he must NEVER win.

Older people do not seem to understand that it is not water under the brdge as my mother would like to call it. It is still a torrent that bubbles beneath the surface and his presence is making it a flood you are not in control of - but you can be xxx huge hugs darling xxxx

OhJude,
Thank you for your kind words. I have been in the process of taking back my life by keeping him away. I even set up a meeting with his wife explaining why I have requested that he does not come on the property and how seeing him affects me. I asked her not to keep calling my Mom with all of his health issues because Mom feels the need to tell me about all about it ( like I care ) and gets me worked up again. All of his health issues are self inflicted, not just bad luck. She didn't last a week before she was calling my Mom again. Then, Mom tells me they are coming over for Christmas and I went off the deep end. I told her to let him know if I ever see his face here again, I will call the police and tell them what he did to me as well as constantly extorting money from Mom whom is on a very fixed income. The problem is Mom doesn't know how to say "no" so I have to get involved. I took away her checkbook, her ATM card, I have POA so I can, but sad I had to treat her like the child. I also had a very long talk with her, (not that I have not before) regarding this, but I told her I was through. I told her if she did in fact want forgiveness from me to start standing up for me for once in her life and to respect my feelings. I told her she was to show me, not tell me. Needless to say, this put a damper on the holidays and he won once again. I know I must take the power back and I am finally setting my boundaries. I don't get upset at my husband, I just am angry dealing with this and he knows my Mom helps perpetuate the cycle by not respecting my feelings. This is why I can relate to Deb, I love my Mom, but often I have a hard time liking her which does make being the sole caregiver even more difficult than if there were not the emotional baggage of a disfunctional family history to deal with. Bless you for your compassion!

Rainey, you have touched upon one of the things that bothered me most with my own mother. I had an abusive older brother who made my life miserable when I was growing up. It was every day with his merciless words putting me down. He would do it at the table and anywhere else. My mother was there, but she wouldn't do a thing to help. Sometimes I would hope my other brother would help me out, but no one helped. I spent the first 15 years of my life dreading his words and his fists. He would even spit on me.

I was about 13 when I finally stood up to him by giving him some of his own medicine. He came at me like he was going to kill me. My brother wrestled him to the ground and my mother told me to get away while she calmed him down. Then she got onto me for causing trouble. So I was not going to get any help and I better not try to help myself.

My mother does love her sons, but she wasn't a good mother for a girl. I'm sure my life would have been much different if someone had only tried to help. Early life taught me that it isn't so good to be female and that you can't depend on anybody else. These are not good lessons for a girl to learn.

Strange that I am the only one helping the woman who never helped me.

Oh JessieBelle,
How I know your pain and fear. If I ever told on him for his other abusives (beating me up) I would just get beaten twice as bad the moment we were alone again. I said nothing for my own self preservation. He was such a jerk to me his whole life and to this day, when I see him, my stomach drops to my feet. I feel shakey inside and that scared little girl is still inside me screaming. Oh believe me, I have gone to so many different therapists, they do not help. They make unrealistic suggestions like, "Cut your mother out of your life or "you won't get better until you forgive your brother." I gave up. Nobody knows how to penetrate "The Wall" I created for my own protection as a child. It is just a part of me. I cannot undo something that is as much a part of me as the heart that beats inside my chest. I wouldn't even know where to start. I feel I do not need to forgive him because of his half assed attempt at an apology many years ago. He did it for his conscience, to get it off his chest and when I tried to speak, he cut me off. No true contrition at all. I think God will understand. I think he was just wired wrong but both of our mothers seemed to favor the boys and enabled their behaviour while we were the problem. Yes, and here we are, the ones who were most neglected being the only one doing the caregiving while they get their freedom, vacations and no obligations or concept of how difficult it is caring for an aging parent with physical and mental problems. I get accused of taking all Mom's money when I have had to change my whole life and am broke most of the time as I can only work part-time. I am taking care of all her bills, finances, investments, everything to make sure she will be in good shape. I am still the villain to my remaining brothers because they think I have ulterior motives. My oldest brother whom I was closest to died of an OD many years ago. I want to ask them if they could put a price tag on their freedom. What would that be? Please know I understand and you are not alone. Someday, we will be free, and when my Mom passes, I will bid goodbye to my brothers and then I will begin to live as you will too. We spend our
Iives dreaming of peace with no more family conflict. Just remember, we did the right thing even though they did not. * Big Hugs *