The worst part is that it never ends.
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.
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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.
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!!!!
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.
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.
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!
"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.
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.
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.
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.
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!
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!
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.
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!
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!