Why is it that being a caregiver for mom is so hard?

Lisabeth...My mom had some times where she would snap at me out of the blue. I know this wasn't mom she would never do that. It took me a couple of months to finally come to terms with this disease. You have to know that she is not the one doing this..it's all the dementia. Now even when mom has her off days...I make sure I give her some type of affection. Whether its to rub her back or sit with her on the bed and put my arm around her. And every night when I tuck her in ..I give her a kiss on the cheek and tell her I love her. This makes things a little more comforting for her. She knows she is being taken care of. God Bless you for being there for her.

Thanks for saying that.

also remember...the disease will make her act that way for others..it's called "showtiming"...mom falls all over my twin sister when she comes to visit. She goes on about how beautiful and wonderful she is...and when i tell her "yes i know mom, she is my twin!" Mom looks at me like I'm an alien. It's not her..its what the disease is doing to her brain. The signals in her brain are crossed..she is losing a lot of reasonable thinking. But hang in there..some times my mom shows up now and again. The sweet thoughtful person she is.

Lisabeth...I know how you feel. Same thing here. I quit working to have mom move in with me to give her care. She's in the final stage of Dementia at the age of 91. She has declined rapidly. The other siblings don't understand the full extent of caregiving and what it involves. They think they can just pick up where I left off..only I am still here. Mom has arthritic knees can't walk anymore. We scoot her around on her walker because she is too proud for the wheel chair.
Give yourself a pat on the back. She needs you and you are there for her that's all that matters. If they criticize you it's only because they are feeling a little guilty for not doing what you are doing. You should never feel bad about that. Your reward is waiting for you in heaven. Nothing can take that away from you..or that you were there for her in the end. God bless and Merry Christmas to you.

Thanks for all the answers, I have tried huging and loving, but some times since she forgets many things and gets upset at me for not telling something I have already she snaps or I snap. I really love her but also my cousins ask me why I am not working and I have to answer again that she needs me, she cannot do anything by herself and I cannot pay for assistance all weeek, specially since if I get someone new things start disapearing. We just had a Christmas brindis here in the house and she loved it, but as always when we have something afterwards she starts complaining about her pain in her legs and I just try to tell her that it was her fault since in front of anybody she won´t try to walk or at least go to the bathroom because she is embarrased and obviously the pain gets worse. Sometimes I wish that someone in the family could just come and stay with her one whole day and I know that they would stop criticizing me. Well as all of you say we are the daughters and have to take care of our moms. they did so much for us when we were kids that now it is the time to give back.
MERRY CHRISTMAS TO ALL and thank you for your kind words

Today was one of the reasons care taking is so hard. My Mom had a fall, she went from the hospital, to a rehab and today I brought her back to her Assisted living home. I asked a million times what do I need to do? Does she have everything she needs? Are her medicines called in? I was told "Everything is fine, x will take card of that. It's already been taken care of".

Of course it wasn't. They waited until the last minute to even look at what needed to be done. It spent today running around doing last minute errands that would have been much easier last week. Her medicines weren't called in to the pharmacy until today. They weren't completed before she needed them. Some of the medicines are narcotics so I can't get them filled until the doctor sees her. We have an appointment tomorrow. She just got home and really isn't up to trip to the doctor tomorrow.

Tomorrow's doctors appointment means I'm going to miss a Christmas party. And a break and something fun that I really need to do. Couldn't they have told me I need one sooner so I could have gotten an appointment when I wouldn't have to miss my party?

There no consideration about what might work for me. It's as if I have nothing else to do but take care of my Mom. I have no life as it is. If I complain they will say "oh I'm sorry" but the same thing will happen again.

I just tired of doctors, nurses etc. thinking I have no life but care taking.

Jeannegibbs, I like the idea of the grape soda. I have been mixing the pills with pudding or applesauce. Daddy might like the soda better.
As for liquid meds, we went to them on some of Daddy's meds. If possible, I'd stay with crushed pills. (Not all pills should be crushed) For me it is easier. The liquid meds, for the most part, have to be refrigerated and taste bad. For some reason, hospice sends concentrated liquid meds. It makes it very difficult for my mother to give them. For the crushed pills, I do them once a week. I bought a crusher at Wal-Mart along with some little plastic medicine bags (right next to the crusher). I put each time's (AM & PM) meds in the dispenser box. When I finish the week, I take each time's meds out to crush. As I crush them, I put each dose in one of the bags & fold it up to put it back in the medicine dispenser box. For the liquids, I bought some of those little plastic cups like restaurants put salad dressing in (also available at Wal-Mart). I put each dose of medicine in a cup & use a marker to put what it is on the top. Some have to have water added to them because they have to be shaken & because they are so thick. I do not mix the liquid meds because it would be difficult to label them. I then take plastic boxes (such as tupperware) & put each time period's meds in the same box. By doing this, I can make sure with caregivers coming & going, 1 that he gets all the meds he is supposed to and 2 he does not get overdosed. I go to my parent's house daily and check to ensure the med situation is going like it is supposed to. Hope this helps some people. For all of us, this is a daily learning experience.

Lisabeth, I don't have any practical answers. I wish I could help. I truly wish I could meet you in person for a real physical hug. i'm 56 too and have lost a career and have felt so many times i'm not a human being, just a hopeless zombie doing the dirtiest jobs - except that zombies don't get hurt and it hurts so much every day, while those of the family who don't care have such a goodtime. AZcaregiver hugs and gold stars to you, i know just how it feels when she fights the diapers. its the very hardest job we're in, folks, for we're trying to face hatred with love. as this site explained in the beginning, we're in the Angel business, and as Mstone55 says, this is surely a hopeful sign in this sad dirty world. all we can do is hold hands with you - don't give up is easy to say, i've given up so many times myself. but let's try just one more time - and one more, one more - to continue spreading care and love.

AzCaregiver- i have the same "pain" issue with MIL. I have had RA for over 20 years. Learning to live with pain was a necessity, or I would have gone crazy a long time ago. I just decided somewhere along the way not to let it ruin my life. So, I am pretty accumstomed to it, and I never complain about it. This seems to confuse MIL as she complains a lot. I just think we are different people. Two weeks ago, I had a full knee replacement. MIL makes a disgusted face whenever I say the pain is not that bad, and that I am getting better every day. Everyone handles pain differently. I don't think there is much you can do with mother on that front. As for taking care of yourself- that has to be a priority.

I am amazed at how many others here have also retired early from jobs to stay home and care for a parent or parents. For those of you still working and doing this I have nothing but admiration as well. It gives me a sense of hope for the world especially at this time...with all the craziness going on around us...there are those of us who still value human life and all the hardships that can come with those lives. We are blessed in our struggles...we are strong...we still have our loved ones...we have each other. Ours is not an easy road, but I believe that it is a road well taken. Sometimes I wonder if my mom ever felt any of these same feelings when my siblings and I were little and running around driving her crazy....the circle of life. Thanks to all of you...you have been such a blessing to me and I apprciate all your feedback and advice...even when it may not be specifically at me...there is always something I can take away!

Neither of my parents ever told us they loved us or hugged us. It was suggested here that I try it and for me it worked. Fortunately my mom was OK with it and of course if she didn't want a hug, some times I'd just touch her hand gently or sometimes she liked having her nails done (but only her way and she'd yell at me the whole time).

I think we each have to find what works out of the suggestions that are made here and not every suggestion will work for us.

I have the sweetest dog in the universe, perfectly well behaved. My mom hated to find even one hair on the carpet. She never liked having the dog come for a visit. After many attempts she finally forced herself to be nice to the dog.

I think she even liked the gentle little hugs eventually and some times she told me she loved me too. It was never a jolly happy easy experience with her, but with these suggestions that I read here, over time it got better for me and shockingly my mom tried a little harder to be nicer too. I hope that helps others to know some times it is downhill and some times they go up hill a little bit too.

Thanks jeannegibbs. That is actually a great idea that I haven't thought of yet. I will have to give it a try.

notwellmyself, please don't feel bad that you can't hug your mother everyday. Each situation is different. You are honoring your mother's preferences

AZcaregiver, I found that dissolving the crushed pills in a small amount of carbonated beverage seemed to work best. Something strong flavored, like grape soda seemed to make the taste more acceptable.

There are a variety of reasons she is on a catheter. We don't have a lift, not to mention she pees at least every 15 to 20 minutes. She has always done that for some reason even before she got sick, so keeping her dry at all is an extreme challenge. She also fights a lot when we have to change her. She hates to be messed with by anyone, and trying to change her many times a day isn't an option because of the pain she feels too. She isn't able to get up anymore, so she is bedridden. I have tried to get her up in a chair, but she slumps down and basically falls back on her bed. There are other reasons too, but after much discussion with my husband and her nurses, we ended up deciding on the catheter. It sounds horrible, I know, but she is also an especially hard person to deal with when it comes to certain things. We are just trying to make the best out of a bad situation.

I do plan on asking her nurses about liquid meds. I figured it would be safer that way. I made sure the pills I do crush are safe because I asked her nurses just to be on the safe side. The truth is that without any kind of training, I am learning as I go, and each day brings something new. Thanks for asking. How have you been lately? I did leave you a message, but I am not sure if it went through on your page.

AZ caregiver, can I ask why your Mom has a catheter? My Mom wakes up soaked every morning and I bathe her , she never had a sore on her, thank God, but why a catheter, dont they have to stay in bed with that? I still hoyer Mom to her recliner and wheelchair to come out with us so I cant imagine that.
On the pills, you can buy a crusher/pulvorizer one on amazon is best, and put them in pudding or yogurt , I use prune pudding. Some pills you cannot chew as they are time or sustained release and dangerous so make sure they are all crushable ok? I know it feels like our lives are on hold, we have to use their money for time off if we can, it makes a huge difference if you can find help. Hang in there!!!!

Eddie, Sounds as tho you have led my life. I was the unwanted child. But, I am now the child with all the responsibility. I have tried over the years to understand where my mother has come from all of these years, and for the most part, I'm okay with it all. I know why she treated me the way she did and it is understandable. I may even have an answer for why I was the one selected to be the unwanted child. But, I too, rely on the unconditional love of my dogs. Sometimes I take my dogs when I go to my parent's. Fortunately, everyone in my family understands a dog's love and accepts it readily.
My question, I see everyone above saying to hug your mother & tell her you love her. How I wish I could. My whole life my mother told me to not hang on her everytime I tried to show any affection. I'm not sure she would tell me that now, but I can't move past those words. I don't know how. I have no problem telling my dad I love him or showing him affection. He was always affectionate.
How does one show affection, which I truly have, for someone who never wanted any shown? I need to resolve this while I can.

LISA:

Forgive me if I'm too direct, but it looks to me like you're trying to rebuild your life while your Mom needs to find one; or at least make an effort to develop a social circle. About the dogs, my family used to say the same thing about me when my mother lived with me.

The poochies' love was unconditional, and they gave me more affection and signs of gratitude in one hour than my mother gave me since she spat me into the world; and has been charging me for it ever since.

My sisters were always critical for my lack of "worship" towards my mother. I told them to take her with them if they thought they could do better. That surely shut their flytrap, for I didn't hear about it again.

If I were your Mom, I'd certainly be grateful.

Caregiving for my MIL is by far the hardest thing I have ever done in my life. There are so many things that make it hard, from knowing she will never get better no matter what we do for her to knowing I will not have any kind of less stressful life until she is either gone or in a home. Due to finances, she is living at home with us still. She seems miserable to me though. She is in the late stages of Alzheimer's, so she is wearing a catheter now, which she hates, and she has to wear mitts on her hands to keep her from pulling out the catheter, which she also hates. It is a constant new struggle daily now. She has gotten to the point where I can't even give her pills in the morning without her wanting to chew them up and swallow them without water. She doesn't understand that it isn't food. Then, the pills taste horrible, so she wants to spit them out, and of course, she needs to take them, so it's a battle lately with meds. I feel so horrible and selfish at times because I just want my life back, a life without the struggles of taking care of such a sick person. Then I end up feeling guilty, or worse, not guilty, because of how I feel. I feel for anyone who takes care of such sick people. My sister is a nurse, and I was getting advice from her about mom's cath. She mentioned how even when she takes care of patient's with Alzheimer's and dementia, at least she gets to go home at the end of the day to get away from it for a while, but I don't have that option. We do get out a couple times a week, Thank God, but sometimes it doesn't seem like enough. Home should be a sanctuary, but it just isn't anymore.

This is a great question! I left my job when I was 58 and cared for my dear mom until she passed in late October. I will be 60 soon, so I can relate. My experiences where almost identical.

First, stay on this site, pose all the questions you would like to talk about, vent. Tell the truth and share. After my mother passed away, I looked back at my first question and I could see how 'crushed' I was while I was caring for her. I could forgive myself and let go.

People on this site told me that I should hug her every day and tell her I love her, which I did... no matter how hard it got.

Also, I struggled with my health and finding time to make exercise and my friends a priority. I asked, how can I do ANYTHING, when my mother is essentially dieing? Isn't she the priority? How can anything for me be more important. When my sweetheart and I did take a week off, my mother didn't want us to go although she can plenty of care around her, and within a week of our return with every day an emergency, she ended up in the hospital. She just wanted me there every day.

For a long time I did not know if it would be a week or a year or quite a few years. My mom passed at 92 of congestive heart failure. Her health was up and down and she could have lived to 100. I wish she did live to 100... but the point is that you never know.

I joined a gym where I could go to exercise 3 days a week. I had standing appointments in the morning, so mom knew that I could take her to the doctor, shopping, errands, etc in the afternoons, evenings and weekends. One Sunday I spent the day with her, so I could be sure she would be OK on Monday so I could make an appointment, but she called me back to her house. She told me she didn't need me on Sunday! So, no matter what I planned, it was Impossible! for me to make an appointment for me for anything. I didn't even know when to make a dentist appointment.

The point is, I found this site very helpful. One day it will be over. Tell her you love her every day. Hug her if you can. Try very hard to make your own health a top priority!! Stay on this site and share and read and hopefully you will find your sanity here.

We have a sense of what you are experiencing and I can confirm that it's a challenge and a blessing.

I know what you mean. I don't know what I would do with out my husband for support. My Mom doesn't want anyone to do anything for her but me. When I hire people to help out I'm accused of shoving her off onto other people. She claims she did just as much stuff for both my grandmothers and my grandfather. Not true. She's so needy and clingy. I've become so isolated. I never have time for friends anymore.

Mom is such a perfectionist. She create much more work for me and herself than is needed.

My husband insists we get away for a weekend every once and awhile. I find it really helps to recharge me. Though it doesn't last long enough. But it's really good thing to do.

I've also been treating myself to personal training. It helps in that its a lot of money to waste if I don't go and the exercise does energize me.

I'd love to have time to read a book. Or at least get my Christmas shopping done.

I'd like to see what other have to say.