Follow
Share

Often times I feel like a hamster on a treadmill, going at full speed but never getting anywhere. I think for most of us it's the fact that there is no 'light at the end of the tunnel.' Others go through a hard or challenging time, but know that eventually, the situation will change. We don't know when it will until death (our parents or ourselves) finally steps in. It's the never ending routine and being so tired all the time from care giving, but feeling no progress despite all our efforts. Each day is a reset. Starting over from Square One. BUT I have joined several special interest groups and I am determined to put emotional distance between myself and my situation with my mother. I've also started listening to classic rock stations in the house, music that blasts the blues out of me with its hard driving sounds. And the good part is my mother is also hard of hearing, so no complaints from her. Hang in there, everyone.

This discussion has been closed for comment. Start a New Discussion.
1 2 3
Each day is a reset and I really would like to know how this story ends. Today was not a good day...I am tired, cranky and worried. My mom's breathing was horrible today Congestive Heart Failure/COPD just sucks !! This whole thing just sucks ;-( I am 57 my kids are grown and you think life would slow down but it doesn't and I am a fixer and I can't fix any of this. It is like watching a bad movie that you can't leave.
(14)
Report

And this is how it is so very, very different from raising a child. Children progress. They get more mature. More capable. Yes, there may be some rough spots ahead, but we can look forward to a rewarding adult relationship with them.

With a chronic condition that is only going to get worse until death, the rewards are very different, and harder to come by.

This whole thing just sucks.
(15)
Report

I compare it to be what it might be like to be stuck in quicksand. The more you struggle, the more you sink. Friends can not pull you out. You have to work at it slowly and progressively and figure a solution or you might drown when the tide comes in.
(12)
Report

If Satan were to create the perfect disease to torture mankind, it would be Alzheimer's, or any form of dementia, for that matter. This stuff doesn't just kill, it first tortures, and not just the victim, but the victim's family, It's the Saddam Hussein of pathology. Terrific, through advances in medicine, smarter lifestyle choices and better nutrition, folks are living longer than ever. Well, actually, their bodies are. Unfortunately, the minds are not. So what's the point of a long life if your mind is gone and the only purpose it serves is to torture your family? God, I need a drink!
(30)
Report

Boy oh boy! Do I ever agree after 5 years of this with Mom and she is still in excellent health considering PD and late stage dementia! I got the "Now it's your turn to take care of her like she did you when you were a child" from an acquaintance, while shopping in Walmart one day. I wanted to scream at her that it's not the same at all, but made some inane remark and moved on before I exploded! I had a nurse say that to me in the ER just before X-mas when Mom had a raging UTI and was a complete mess! I did give her a what for, because she should have known better! That was after she left me to undress Mom and get her onto the gurney by myself. It was not a very pleasant 5 hours in the ER that day!
You are so right Leanne and Dunwoody, reset is a good description. Same routine over and over every day for who knows how long! I'll be 62 in August and am definitely going to start collecting Social Security! Mom is 85 and both her parents lived to 92! So I could be in it for another 6-7 years! Yikes!!!!
(13)
Report

I'm sorry, and I'm usually a pretty compassionate person, but people who compare taking care of someone with dementia to taking care of a child should be whomped upside the head. Or better yet, take on the 24/7/365 care of such a person for a month.
(18)
Report

Or a week, Jeanne.
(5)
Report

Don't worry, Jeanne, I hear that all the time. Then one day, an important client said it to me across my desk, and I straight out told him - NOT SO! Then I compared the 2 and he sheepishly acknowledged that I was right. I'm very shy but this time I spoke up. He had real admiration (and sympathy) in his eyes after that. Sigh...Definitely NOT the same (raising children and caring for elderly)...
(11)
Report

Dunwoody101 I am going to say "Thank You!" to you!!!! You defiantly deserve a Gold star. Sharing your input and not being afraid to express your negative emotions here is good for us all. You don't seem to feel guilt, you seem to feel anger, that's what it seems to me, from this post. This is because you are facing it full force, not running. Your reward will someday come to you when are comforted by the feeling of knowing you did everything you could, and that is all any of us can do!!! You are using your experience to help others so they can learn how to cope, you should be proud of yourself. I have witnessed family throwing their own relatives under the bus for doing what is right.
Just a tidbit of something you might find amusing...
My Mom used to yell when I was a teen for blasting Led Zeppelin, Pink Floyd,
Bad Co. Ozzy Etc. "Shut that crap off your going to drive me crazy!!!"
She can still hear a pin drop now. When she was living with me (dementia) I would play the same type of classic rock music "I'd say is it too loud, Mom, I'll turn it down or change the music?"
She'd say "Oh no I like that music turn it up!!!" I'd say "OK COOL" she's ask "who is this?" I'd tell her "the same band you used to hate and you'd say it gave you a head ache!" ....Mom said "I don't have a head ache now." I'd laugh inside, and say to myself... maybe not you.... but I felt like I am going crazy, and I have a head ache every day.
(9)
Report

My mom did not take good care of me she was an absent mom...so when people tell me that I am giving back what I got as a child it makes me furious....I was in therapy to get through this. I have done a much better job of taking care of her..why ? Because I am all she has and no matter what she did or didn't do I could not abandon her and believe me in the past 15 years I have wanted to many times, but I knew it was not right..the therapy was to help me get over being angry so she would not die and me still be mad. I am not mad, but I am tired...
(15)
Report

I know exactly what you are saying. My mom was hardly a mom. Self centered and putting herself ahead of her kids, when my dad raged against his children (and he was a nut job), she never protected her kids. She only felt sorry for herself that she was in such an unpleasant situation. Hell, even animals protect their young more than my mom did. I guess the one emotion I feel more than anything is resentment. I have no idea why I am such a good son. It's the mystery of my life. But I've got enough to drive me crazy without dwelling on this as well.
(7)
Report

Same mystery here ...and agreed too much going on to dwell on something I cannot change..thanks for the hug Dunwoody 101...I downloaded your book and look forward to reading it :-)
(1)
Report

Sounds like everyone might enjoy listening to Roy Clark's "Thank God and Greyhound."

One of the things I am most uncomfortable hearing -- and I hear it a lot around Birmingham -- is how good it is that God brought me here. I nod, but what I'm really thinking is that I must have been terrible in some past life and got sent to hell in this one.

Seriously, it was my choice to be here, and to quit would be to fail. I don't want to fail at what I'm doing. I would like to feel a bit more inspired while I'm not failing, though. My greatest inspiration now is in looking at the complexities of family relationships and trying to understand how things got the way they did. This is probably the biggest reason that I am not upset with my uninvolved brothers. Mostly I think they are the sane ones, and I shouldn't be upset with them for not being as crazy as I am.
(9)
Report

I'm with you Jesse! I have 6 sibs and rarely see any of them. they don't even call to ask how Mom is doing. they all have jobs, money, houses, and go on vacations whenever! I haven't been away since June of 2011 and that only happened because I booked a flight to the other side of the country and then told them they would have to cover while I was gone! Look's like I will be doing that again soon!
And yes Jesse, I here"you will certainly earn your place in heaven!" I llok right at them and say " I want to go to hell first and have some fun!" the reactions I get are priceless!
(4)
Report

2tsnana I must say my Mom.... if I were to put her on a scale and weigh out the good and bad Mom issues I would give her no weight on house keeping, no weight on picking me up from school when it was bad weather, no weight on making sure I ate healthy all the time, no weight on helping me with school work, all I really can give her is all the weight on, she made me confident as a human being by not spoiling me, the only time I remember her giving in, was when I was sick. She taught me how to survive on my own and care for others when they cannot care for themselves. If you want or need something no one is going to give it to you... you have to work for it. She also told me, a lot, .... "Your a pain in the ass!"
"You will see someday everything I do, do for you, and you'll appreciate what I don't do for you!"

I don't have children but my sister has three boys and I told them a long time ago. I will never spoil you with lots of gifts or money, you get that from your Mom and Dad and your Grandparents.
I told them since they we little....
"Give a man a fish feed him for a day....
Teach a man to fish feed him for a lifetime!"
I also told them....
"It's nice to important, but more important to be nice!"
I told them you may not understand these words now, but if you remember them I have given you something you will appreciate one day and thank me, because if I teach you something, you will be able to fend for yourself and if you are nice to people you will be treated nicely in return.

I was the youngest of three my brother the oldest is mentally disabled, my sister is supposed to be the smart one. He was sheltered and she was protected by my dad for being scholarly and able to handle money...LOL neither can deal with a situation without confronting my Father to this day. My brother really grew up in a way, because he was forced into having to. My sister still has no idea how to handle stress, if there is not a book on "IT" she has no clue. If you can't pay to fix "IT" she is lost.
My Mother has Dementia yes.... hated me for helping her, fought me the whole time, but when I looked her in the eye, asked her "Do you trust me to take care of you?" when I need her to trust "ME" the most... she looked back at me and said
"YES, YES I DO!" I nearly went into shock, then she said "your a pain in the ass!"
The point of all this is maybe the reason why the majority of us here felt neglected as children, is because, out of that came strong willed, loving caring people, who knows what it's like to be needed. Just maybe we were meant to be here for some reason, it's just not in us to turn away because we have lived it.
(6)
Report

jeannegibbs In some ways they are like children and in some ways not.
A child at 2 years old, does not know right from wrong, danger vs. safe. A child remembers how to get to the candy and always wants sweets and if you find evidence of sneaking candy they will lie about it, out of fear of you getting mad. A child at a certain age does not share things, or want to be told what to do, take a bath, eat healthy foods, they lie about things "just because". A child test your patients and your security. A child needs to be guided and watched, not left to fend for themselves. A child can't be trusted to take medicine on there own or cook a meal, go shopping on their own. A child needs to be reminded that it's cold out and to dress appropriately.
A child hears music and reacts in a joyful way. A child needs to be loved and cared for because that's where they feel comfort. If a child does not sleep well they get cranky. If a child does gets sick, they don't know exactly how to tell you how they are feeling, and knowing the child's personality and behavior change you know something is not right just by looking at them.
I saw a woman at the NH....Crying.... "I want my Mommy, I want my Mommy!"
One day I witnessed my Mother saying to the aide as she dresses her "Thank You Mommy!" then Mom hugged her. I was so jealous, because Mom didn't really think that the aide was her Mom, she said it in a kidding manner, what I witnessed was Mom's affection and appreciation knowing the aide cared about her. Days later she said the same thing to me, because I was helping her with something, she actually let me do so, on that day.
Yes caring for an Elder with Dementia is not like caring for a child, but in many ways it is. I have gotten angry at people for insinuating it's like taking care of a child myself, because they don't understand the fact that, you can not discipline an elder with dementia. You can not teach them something today, so they can learn it for tomorrow.
The only thing you can do for an Elder or a child is keep them safe and healthy and love them for who they are until you have to let them go.
(2)
Report

Sooooo glad to read your posts. I never had kids, but I get it that it's NOT the same. People who don't have to deal eith the dementia as the main caregiver do.not.have.a.clue. (my sisters!)
(1)
Report

Thank you Iwuvsicecream you saying what you said about caring for an elder with dementia. When mom felt the love and began to trust me....she become the sweet person I remembered. I remember the last week we would sit at the edge of her bed I would rub her back and she would lean her head on my shoulder. Just sitting there and holding her not saying a word. It was priceless and I felt her letting her guard down and letting me help her. She felt safe..and I saw more of my sweet mom finally the last week of her life.
It's hard not feeling the resentment...I get that. It's human to feel the dread when you can't see a light at the end of the tunnel. But after I came to terms with the disease and knew that this wasn't my mom. I learned how to care for her better. Get passed all the frustrations. My mom is finally at peace, and I am so glad I never gave up on her. God bless you all for what you are doing.
(5)
Report

Just know we are all here for you. We understand. My moms Alzheimer's has made her a mean, horrible woman. Not all the time, but enough of the time, enough that it hurts, even though I fully realize it is not her fault. My mother died a year ago as far as I am concerned. I am caring for the shell of the person. I am
exhausted, I sleep on her schedule, which frustrates the heck out of me. Last night she awoke at 3 am, we were up until 6am. I went to sleep again when she did and we got up at 11am....I cannot stand that part of it.
(2)
Report

I am so thankful for finding this site recently and learning so much already from so many great people out here who are honestly sharing. First off Dunwoody101 - well said. I have been a caregiver for my father and now my mother over the past 9 years. Mom is now in a NH as she has exceeded home care. It doesn't ever end. I searched and found this site due to the extreme level of burnout I have been experiencing of late. I have put my life on hold for too long now and there is no apparent end in sight. It's extremely hard and you cannot understand it unless you have lived it. Thank you to all who share their stories - it really helps to know you are not alone in this living hell.
(8)
Report

Thanks, Dixiegirl. Yes, I think the worst part is that it never ends. In one respect, it's like raising a child, but you know that child will grow and mature and you will see progress. With an elderly parent, there is no progress. Only decline. I've been doing this for a little over two years now and I am totally burned out. I have no idea how you have survived nine years. And it does help to know that you are not alone in this situation. Thanks to this site, I realize there are so many in our situation. It doesn't make our lives easier, but it does make us realize that we are not totally alone.
(3)
Report

I hate when people say that to me. Who the hell do they think they are? I am no martyr, I do it because I want to. I will tell you one thing for sure, my mom would be absolutely mortified at her behavior with alz. if she were in her right mind....absolutely mortified. My mom is completely healthy except for the Alzheimer's....It's the saddest thing.
(2)
Report

I to hate this dementia disease. I feel trapped and sometimes just sad that my life is going by and Im not enjoying it. I get so angry everyday telling mom that there are no people stealing things. I know that she will never believe me but its just so crazy. Everyday she says I don't have any clothes. She has at least 15 pants and tons of nice sweaters, jackets and such. Her drawers are jammed and her closet is stuffed. I can't seem to convince her that she has lots and lots of clothes. At times it really gets on my nerves and Im just not nice. My mom thinks pictures or posters of people on walls in the stores are real and she talks and waves to them. She thinks magazines and tv people are real. I keep saying mom, they are just pictures and they are not real. People on tv can't see you. It never gets thru to her, so I don't know why I keep on saying it. I guess I just want her to be normal again and not have this crazy disease. She is also in great health, and I always think what good is it to be fit as a fiddle but your mind is gone. I haven't been able to sleep with my husband for a year now that my mom won't sleep without me. It makes me so sad as you think that once your kids are raised that it should be your time. Mom wants to be with me every single minute so that is just the way it is. Caregiving is hard for me and I feel like Im crying inside. I guess taking care of mom is like caring for a disabled child. At some point when she doesn't know me and looses control of using the bathroom , then it may be a nursing home. How do you pay for that? The costs are so high. Im just so thankful to know that there are others that feel stuck in this cargiving role. It helps me cope with dealing with this situation. So thanks to everyone that shares their story here! It keeps me keepin on!
(2)
Report

Ah Sujean, we all hate this disease! And it is certainly at least as hard on the caregivers as it is on those with dementia. Hugs to you.

Your mom is never going to be normal again. In fact, dementia progresses and she will get worse. Personally, I think that accepting that fact and not trying to "cure" any aspect of it is ultimately less stressful.

For example, she thinks people are stealing from her. (Very common and very annoying.) Instead of arguing about whether there are people stealing thinks try semi-going-along. "Oh mother, that is terrible! Your reading glasses are missing? I can't imagine who else would want them, so maybe I misplaced them. Let me look for them for you." Sometimes the person with dementia has hidden the item to keep it safe and then forgets that. Often they use the same "safe" places over and over and it becomes easier to find them. You are right that she will never believe you (at least now) so stop frustrating yourself by trying. Take a different approach. This behavior did not last long for my husband and it dropped out after a few months. Let's hope that's how it works for your mother!

On the clothes, I would unjam the closet and weed out the drawers. When she "doesn't have any pants" you can go "shop" for some among the things you removed. Keep recycling her wardrobe this way! If she loves to shop, find a nice consignment shop or thrift store she can buy things inexpensively once in a while.

About the magazine and poster and tv people? You are right that it never gets through to her so don't bother telling her they are not real. There is no harm in her waving at them or talking to them. You might say, in passing, "That's a very attractive friend you have."

Sleeping with her is a different issue. That is beyond your role as a caregiver. I don't have any experience with that but I suggest you start a new thread by posting that issue and asking for other people's experience. I don't know how old your mother is, but she is in good health. Are you willing to sleep with her for the next ten years? Yikes!

If the time comes that she needs a nursing home and she can't afford it, that is where Medicaid comes in.

Yup, dementia is a terrible, terrible disease. I hate it!
(7)
Report

Sujean, Jeanne is right on in her remarks. I have been caring for my mom for many years, and for the past 5, it has been full time. She used to accuse me of all kinds of things and get very angry and hostile. She too has a strong heart, but the PD has taken it's toll as well as the dementia. She is down to 100lbs and has been incontinent for almost 3 years. She can't feed, wash, or dress herself and is always in motion.
It's definitely a lot of work and very challenging emotionally and physically. It's somewhat easier since she has been in a wheelchair. She doesn't get into things or try to "escape", or fall down anymore. I haven't placed her because she is so manic. It will be hard when I finally have to, as she will have to be "chemically" restrained to keep her safe. Unfortunately the laws that keep facilities from using restraints on people also force them to use meds to keep people like my mom from getting hurt.
Don't argue with or try to correct your mom. It doesn't work and only stresses you out. Just agree with her and try some of Jeanne's suggestions. They do work. AS for repeating yourself over and over, that is something we all live with and have to learn to stop and walk away some tin=mes, just for our own sanity!
As for sleeping with your mom, I don't think that is a good idea. It may be rough for a while, but try reassuring her that you are right there in the next room and if she needs you, you will hear her. get a baby monitor so you can hear her. I would suggest a bell at her bedside, but that could be a disaster in the making.
We are all doing our best and none of us likes being in this situation, but we do have choices and knowing when to make the right one is hard.
You are not alone! Just remember that! Good luck!
(3)
Report

Is it bad of me to really really want it to end????
(2)
Report

bwatkins, we have all had those feelings at some time during this whole mess. It comes from stress, sadness, and hopelessness. There is nothing wrong with wanting to get your life back. We all do!
(3)
Report

Jeanne and Dee, thank you for your comments. The reason my mom wants me to sleep with her is she is scared and insecure. When she sleeps on her back she snores with her mouth wide open and sometimes stops breathing so I have to make sure she gets on her side. It really scares me. Maybe sleep apnea, but she wouldn't and couldn't wear that mask thing. I'm afraid she might get up in the night and wander around. Sometimes she wakes up at 2 am and thinks it is time to get up and dressed. If Im there in bed I can keep her sleeping, by telling her it is the middle of the night. I don't think I could sleep peacefully not knowing what she may be doing. She is constantly hiding things in socks, under pillows and other places so the people can't steal them. Why can't you convince them of their faulty thinking? Is it because they can't reason?
Mom couldn't think of the word watch when I pointed to my watch. She says I know it. Then I said, you just can't find the word. Try to think hard, sometimes she knows and sometimes doesn't. She said whats happening to me, I used to be able to do it. Just wondering she can't say the word because of her memory or is it the communicating skill. You would think that you could retrain some of the lost skills. You still can grow brain cells. I find great comfort in everyones input and knowing that Im not alone in this fight.
(1)
Report

Sujean, I have sleep apnea and I sleep MUCH better with the CPAP machine, but I understand that probably isn't practical for someone with dementia. It is scary to have the air passages close hundreds of times a night, but the body always recognizes the danger and opens them up immediately. The problem is with not getting good quality sleep, but this condition is not fatal. (I was glad to read that when I was diagnosed!)

Get a baby monitor so you can hear her from your own bed. Put a shop bell on her bedroom door so you can hear if she wanders out of her room. Getting dressed in the middle of the night is not fatal, either.

Sujean, I urge you to get some education about this hateful disease. There is something seriously wrong in your mother's brain. Depending on the exact kind of dementia she has, there may be tangles, plaques, protein deposits or other abnormalities that can be seen and identified in an autopsy. Her brain may be shrinking. She cannot help this. You cannot fix this. You cannot convince them that this is faulty thinking because their thinking is faulty! In some kinds of dementia some learning can take place, at least in the early stages, but that isn't always the case. Loss of words seems to come and go. Please don't distress her by "testing" her and asking her to name what is on your wrist. If she doesn't know the word "watch" today, so be it. Help her communicate in spite of the lost words. Just don't expect if you tell her it is a watch now she will remember it in ten minutes. (One night my husband said he had to get up and would I bring the wheelbarrow. I said, "Sure thing, honey. Here's the wheelchair. Let me help you in." It would have been pointless and mean to call his attention to his wrong word.)

Think of how terribly, terribly frightening it would be to not know the names of familiar objects. To be confused, and to know you could no longer count on thinking correctly. Wow! What a hateful disease!

I always tried to comfort my husband when he was frustrated by his loss of memory and cognitive skills. I'd tell him, "Hon, you have a very good brain and you are very well educated. You are a smart man! But right now the disease you have isn't letting your brain work quite right. But don't worry, when that happens I'll look out for you."

The key is Mom can't help this. You can't fix this. She is healthy in other ways and this could go on for many years. Do your best to comfort her and minimize her distress. At the same time, you need to take care of your needs and your marriage.You need respite on a regular basis. And you need to sleep in your own bed!
(6)
Report

Jeanne is right Sujean! Your mom will get worse, just the way it is. If she can't come up with the right word, don't stress over it. If she is calm, just ignore it and move on. If she is struggling to find the right word, quickly reassure her then redirect her attention to something else. You have to learn to live with this disease so she can too. When you can come to terms with what is happening, it will make it easier on her.
My mom holds her breath all the time when she is sleeping. Sometimes when she is awake too! She clamps her mouth shut tight and puffs her cheeks out and even turns purple! She sleeps well with Seroquel, for most of the night, but by morning, she starts up with the holding her breath, so I get up early every morning and check on her and if she is doing this, I roll her onto her side and she stops. She will sleep for another hour at least, because she has worn herself out doing this. It used to scare the crap out of me, but now it's just part of the routine. The neurologist said it's a "habit" Mom started and now it's just a part of what she does.
I have Restless Leg Syndrome and have a hard time getting a good night of sleep myself, so I had to learn to keep Mom safe at night and try to sleep myself. She has not been able to get out of bed on her own for almost 2 years now. That is a blessing in itself, just knowing she will not try to get up on her own and is waiting for someone to help her.
Talk to your mom's doctor and see if they can prescribe something for her anxiety and to help her sleep. In the meantime reassure her you are nearby and will be there if she needs you. Get a bed rail for the side of her bed and put pillows under her mattress cover on either side of her, so she can't get up in a hurry. This will allow you time to get to her if she needs you.
Like Jeanne said, learn all you can so that you know what to expect and don't stress mom by trying to make her remember or do things she can no longer do. Good luck to you and your mom!
(3)
Report

1 2 3
This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter