Being a Caregiver has turned me into someone that isn't me.

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2 yrs ago my husband, myself and our 2 small children moved in with my mother. We did this because she had taken a walk and was lost for about 5 hrs. It was nothing short of a miracle that we found her. My mother was dx as entering into the last stages of alzheimers and she has temporal and frontal dementia (which means she has trouble communicating and often cannot understand us). Communication is very frustrating. For the most part things go well at our home, but at times there is stress. About once every one to two months I usually have a melt down. I just go crazy. I yell and scream usually over something my mother has done that she can't help. The stress of caring for my mother who is not able to do even the simplest of things and having 2 small children is sometimes overwhelming. Yesterday, my mother came home from the adult day dare (she attends 5 days a week) and was not feeling well. I told her I loved her got some meds to help and suggested she lay down. She was not herself at all. This morning she woke up late, not the norm. Slept almost all day, not the norm. Did not want to eat, not the norm. Could not understand me and could not communicate what was wrong. I did not know if I should take her to the doctor?? I struggled throughout the day to get her to stay awake and eat a little. We finally had her go to bed around 9:00 p.m.. At midnight I heard a big bang. I ran into my mother's room to find her lost in her bathroom in the shower. I asked her if she was wanting to take a shower and she said, "yes". Well, I was mad. I did not want to give my mother a shower at midnight. I was yelling and because she could not understand me had to physically turn her and give her a full shower. She normally is able to help a little, but not tonight. I was not abusive, but I was not gentle either. I was mad. I was angry. Now I feel guilty. I know it's not her fault. I know it's the alzheimers, but it just doesn't make caring for her any easier. Not only does it break my heart that I treated someone I love with my whole heart this way, but my kids and husband are seeing someone that just isn't me. I'm normally a fun, kind and loving person. You know the kind that would go the extra mile. I moved in with my mother to keep her from going into a nursing home because I love her and feel I can give her better care and there is not question about that. But, when I act this way . . . I'm not sure. I am taking her to the doctor tomorrow. Any words of encouragement out there? Any help out there?

51 Comments

Joal! First you aren't alone in your feelings. BREATH!!!we all go through that!! even though your mom might not understand. apologize to her. you will know and feel better for it. talk to your family of your feelings. encourage them to encourage YOU "take a breather mom!" take a 5 when you feel youre about to explode. I find myself sitting here for hours upon hours looking for an escape in between all the little emergencies i go through each day. i forget my own advice most times! there are volunteers out there that will come and sit with your mom for a bit. church associates?
your moms "not the norm" is my moms norm. abnormal sleeping and eating IS a part of dementia. my mom just got out of the shower and its almost 3am here! They do not realize "the inconveniences" that we go through at times. No its not their fault. i sometimes have to just talk so gentle and say "oooo its way too early for that.. its night time!" and gently coax her back to bed.. hard sometimes when i grit my teeth the entire time.
If it is a sudden "not the norm" then yes definitely go to a doctor! Is he a specialist in dementia?
hate to mention, but what is your husbands role? does he also help out? maybe he feels the same way. instead of yelling at mom ask if he can be a sounding board. first time i took care of my mom when she had a foot amputated i had a friend that would just sit there and let me yell. didnt have to comment or even look at me.. continue what youre doing! and id go for it!
Hope all goes well tomorrow at the doctors. And please dont forget you arent alone and very much welcome here to vent and rant to us also.
KelleyBean -- Thank you so much first for not judging me. My husband is a great help and support, but he too is feeling the stress. So, I often try to keep my husband's perspective in check. He can't do a lot of the day to day get up, get showered, get dressed things . . . but he does what he can. I have an 8 year old and a 5 year old who don't understand why grandma acts the way she does, but I always encourage them to love her and give her bunches of hugs and kisses. My daughter though at times wants to distance herself a little from grandma. I just keep encouraging her to love my mother. I have a very sweet and caring husband, but he has had to deal with things pertaining to my mom that I don't think he was prepared for. I have a sister who tries to take my mother one weekend a month due to living 1 1/2 hours away from me. I have 2 brothers who live close, but have told me they cannot deal with our mother. The daycare helps a lot. My mother also has 2 sisters who help from time to time, but are "know-it-all" type of people and are always eager to tell me what I should and shouldn't do. My mother has a family care physician and we also see an alzheimers specialist who encourages me to get with a support group. But, with 2 kids, my mom, an active family . . . I just don't seem to be able to get there. So, tonight I went on the hunt for some site that I could just . . . vent. I am so thankful for this site and for your encouraging thoughts. Hearfelt thanks.
The doctors were right! if we decide to do this, then we need someone also, who knows what it is like. tonight, i kind of blew a friend off because she was giving all these ideas and just felt like she was pushing me(im going through something very disturbing with my mom right now) and i had already tried the ideas. do your daughters understand that yes grandma needs love because grandma is sick? they are fully aware of what is going whether we realize it or not. they need to be just as much a part of this as your husband sad to say. they ARE so young. but it wont be as scary for them. they will understand that if grandma acts funny, she needs help. it seems that you are trying to be the superwoman for the whole family. thats so tough for you and i cant imagine it! ask what your husband is willing to do to help. let him bring himself into it. he'll get comfortable with that and move in a little closer. i dont mean to say that your girls need to be the caregivers haha i just realized what i was saying. my moms companion brings one of her grandsons every now and then. they get scared, but we talk to them. "she just needs a drink! can you get some water for her?" or a towel. whichever. they feel more in control of the situation when they feel they are being the best help. find small things for them. let it be a family thing. a strong family is the best and this is the biggest undertaking youre probably going to face. stick together!
KelleyBean -- will do. My daughter who is 8 is another set of eyes who often tells me if Grandma is doing something she shouldn't. My son who is 5 thinks of my mother as a playmate and loves playing with her. However, my mother will often show anger towards my daughter and husband. Not physical just verbal and facial expressions. However, my mom loves my daughter, son, and husband. I thinks I'm probably the mother figure. In my family I am kind of the center hub . . . my husband, kids, mom depend on me. I lean on my husband a lot. He does a lot for me and the kids. He really does the most for me in just loving and supporting me. I remember when we had to make the choice to sell our house and move in with my mom. I wanted it, but wanted him to bring it up and express his opinion. Before I could say anything, my husband suggested we sell our home and move in with my mother and help care for her. He has been supportive, but often gets upset at the fact that he cares more for my mom than some of her children. My brothers have not been easy on my husband. They have often made him feel like an outsider due to their own guilt. Dealing with family / sibblings is a whole other ball game. My husband and I just try to take care of my mom and not upset the apple-cart if you know what I mean. We are the caregivers of my mom and my sister has power of attorney. She, however, has recently seen more of the demands of my mom. Last weekend she had to give her a shower and assist her in going to the bathroom. She has never done that before. There has been a change in how she is treating this situation and she seems more supportive. I am the youngest of 4 children, my sister is the oldest.
My brother is the oldest at 40 and me just the "baby" at 31. He just doesnt know what to do. he thinks if he throws money on it, it will go away. and he cant afford that at all! it come to the point where his visits are far and few between. i can understand.. i can.. but mom cant..that hurts me..

it sounds like your husband could use a good dose of support too! I already like him! "but often gets upset at the fact that he cares more for my mom than some of her children" then love her even more!! you 2 are teaching your kids a very valuble lesson in life. a hard lesson, but one that will enhance all that they are. or all of you are. no one knows the right thing to do ALL the time. but each night when our moms lay down to sleep and we all breath a sigh of relief and hope for a somewhat quiet night, we know that we did the best we could and smile that there was one more day that everyone made it through. you and your husband should be so proud of yourselves. a very good quote here, " you're shaping the future" youre kids dont understand now, but they will. and you will too.
KelleyBean -- I just want you to know how much you helped me last night. It was late . . . I had all these feelings. You just knew what to say. I went to bed with a lighter heart. Today mom went to the doctor . . . I'm still not sure what is going on but they gave her some meds and told me to keep a close eye on her. Anyway, Thanks again for the pick-me-up.
KelleyBean -- One more thing -- I forgot to ask you how are you doing? I am sorry last night I was focused on me. However, this morning I thought of you and wanted you to know that I am here if you need to talk.
joal, im feeling tired haha i got too much sleep lastnight. i dont know what is going on with my moms dementia, but she has started to pick her wounds and put it in her mouth. A story for another time perhaps. After the doctors yesterday and cooking her a big dinner, I made pasta figoli like you can get at Olive garden? i sent mom to bed early. she did not like that one! an argument ensued. to bed she went though! i was just so frustrated. there were a couple times she got up, but i quickly got her settled again. it was the first real sleep ive gotten in a few months. i think in some part of her she realized(for now) how tired i was.

but today starts a new day. the rain has stopped and the sun is shining brightly(sort of, if you happen to get up as early as i did). were off to have a test done at the hospital.

and we will all get through another day right?
WOW!

Im the really nice guy, and the stress of caring for dad when he does things he can't help pushes me over the edge, and I yell, and I'm less gentle. Than I too feel guilty about it, and he tells on me, which certainly doesn't help matters.

I'm doing what I do, to keep him out of a nursing home, though these damn therapists want to put him in it. They say that I am supposed to help him when they aren't here with his exercises. Thing is, I've been dealing with him for 24 hours, some of it is just on call, and I honestly just look for ways to avoid him, so I can have some alone time.

I don't really feel guilty about that.....I was not aware when I took up the role of his cook, cleaner, dresser, go getter, caller, and medicator; also meant that 4 times daily I am to spend a half hour doing therapy on him. Which may not seem like a lot, but those other chores, plus watching him to make sure he don't do something that will hurt him, really eats up a lot of time.
greyson.. he tells on you.. haha.. i just found that funny.. i tell on my mom all the time..doesnt matter if we are the sweetest most mild tempered people... this takes a toll on us... wish i could say try to get an in-home therapist, but it's 4 times a day? hopefully the new "sitter" you got for him will work out. that will help...these things that you mention wont be as hard to do anymore.. because you will have some help here and there.. bet come spring with the help, youll get to go fishing..wouldnt that be great? and hope you took note how any times i wrote it.. you'll have HELP.

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