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anyway--fast forward to now....he has and continues to become more critical, mean, etc. He varies from day to day on his motor skills. He has delusions, paranoia etc-- he has it all. I am a wreck. There are times when it's just confusion, and other times when it's extreme agitation...Like living with a manic depressive or schziphrenic. I gained 40 pounds in the last 3 years. I cannot talk on the phone during his waking hours because of his paranoia--as a result I have lost contact with most friends(although they do understand). What few other relatives i have(who are also elderly) have had to take a back seat as I am unable to go visit them etc.
I'd often told people that I would not put him in a home as long as he could use the bathroom pretty much by himself-- well I fear that is going to be a problem soon. More and more, he seems to be so "out of it" that I know that any time he's going to not be able to handle it himself.
His regular doctor gave me tranquilizers for him(very mild) for when he gets agitated.. When he takes them he sleeps all day, which is not a problem, but he becomes so weak that I literally have to carry him to bathroom etc and he can barely speak(slurs words)..So I guess that's the choice, agitated and mean or so feeble he has to be fed etc..
I'm at my wits end. When I think about him passing or going into a home, then I feel the other extreme...guilt etc. Mostly just wanted to get my feet wet here and vent a little. If it weren't for the computer and cable tv I would have gone crazy by now.
Thanks for the info, but I have to ask, does AC approve of you promoting your book here?
Remember depending on what stage of dementia your loved one is in, you are trying to provide care for persons who may have lost 1/2 pound of brain tissue to one pound to one and 1/2 pounds to at the end of life two pounds. In other words, every annoying, frustrating, dangerous, embarrassing, confusing thing you are dealing with are all related to the damage the disease is causing in the brain. Some of you are seeing loved ones behave like children, have tantrums, or require the level of care a toddler would need and its all from the dementia.
One of the most difficult areas you face? Unlike other diseases, people with dementia don't look ill with the disease until they are almost at the very end, i.e. stage six.
never wants to go to a nursing home. She is a love most of the time but the typical obcessing can be redirected with folding laundry etc. Notes don't seem to help - but I have put a lock on my bedroom door for pvt conversations on the phone - since she gets exasperated when I am on the phone. I am 1700 miles away from dear friends that I have always kept up with from home way before she came to live with me and I will not be questioned or suggested to get off the phone because it takes time away from her. I agree - the more you do for them - the less they will do so "buck up" and ASK her to set the table around 3pm. They also need a half of Ativan at that time so ask your doctor. Do Not ask her for help when she is underfoot while you are doing dinner. Ask her to clean off table of her own things - mine likes to leave for others to do. Until now - I have done it - now I say - Mom pls put your dishes and table mess away where it belongs like we do - most often she will. AND WHAT IS WITH THE SWEET TOOTH??
I have to hide all pastry, cookies, etc. and take out only for desert since she would eat all the junk in the house first and never have appitite for real good food I prepare. Frozen Cherries in store should be a staple for constipation or just daily comfort. Put on cereals, in small cup for snack, and blueberries frozen
too. Keeping them regular is sooooooo important. Their activity is not often enough to keep them regular - Prune Essence Orange or Lemon is great too. I need to keep her drinking since her urine is too concentrated due to her not drinking enough so - I buy 4 pcks of crangrape and kids 100% juicy juice cartons and just give it to her to drink. One thing I have learned - DON'T ASK - JUST DO IT. Kidney function is vital and urinary tract infections can cause delerium and more confusion so be on top of that always. If she voids (pees) ask her to not flush the toilet after she goes - fib and say you are cking the water pressure. If it is dark - get it cked - if it has a foul smell - have it cked by calling your doc and keep sterile urine containers in the house so he can call it in to lab and you can bring over after she has her bath. Bathing and cleaning her pvt areas is essential - they were brought up in the Puritan days and do not
TOUCH THEMSELVES AS WOMEN - put gentle liquid soap on their fingers while you hold the spayer and ask them to sep. their pvts and clean - most will freak like mine did and just want to use a soapy face cloth but unless they actually sit in a tub of water - this needs to be done 3xw. Saving them from a UTI could save their life. Men has no issues with this. Good luck and do not expect a CNA to do this properly. Yes I am a nurse but when pt is your mom -nothing is easy. God Bless Rae Rae
The obsessing that goes along with dementia can be like a scratched record, with things playing over and over again. It can be strange that our parent may not remember what they did the day before, but they can remember the things they obsess on.
How does your husband feel about things? Maybe you and he can chuckle and make things easier. Much of what our parents do are irritating, but not so serious. Since your mother is a dependent personality, something that will help is to set limits on what you will do and stick to those limits. Does your mother help with the bills? Maybe she can do that. It would help her feel useful. Encourage her to do what she can. My mother will let me do everything for her except eat and watch TV if I let her. For example, this evening she said she couldn't reach high enough to hang something up. I had just seen her do it with another article of her clothes. I told her to keep trying because it was good for her to stretch. (Why she was hanging clothes over the window, I have no idea, but I wasn't going to do it for her.)
I need to set better limits myself. My dependent mother consumes way, way too much of my time. This has really harmed me, so it needs to change. Unfortunately, her selective memory forgets everything I've done. She tells people all I do is sit in my room. Very strange, since I don't have enough time to even do my work.
My advice is to let her be...walk away. Get fresh air and a fresh perspective.
I am taking care of my 91 year old mom with progressive dementia. She has a jekyl and hyde personality. One minute she is a sweet person...the next minute she is angry and opinionated. My mom was never like this before the dementia. Never would speak a bad word about anyone..always considered feelings. But now...oh boy..some of the things that come out of her mouth. Yikes. I love my mom...I hate this horrible disease. But I totally can empathize with your frustration.
Respite is a wonderful thing..if it's available to you...I highly recommend you use it. But in the long run...just know you are doing a wonderful thing and will be blessed because you did.
If you want to keep your space of limits try posting signs, such as Patti's room, Patti's closet, Patti's chair, she may forget you told her but she can read. You can get some freedom from these signs... if she wants to know what day it is post it on a message board daily she will eventually look at the board and stop asking, you can also write what time of the day you are doing this or that she will rely on the board to see what time lunch is pill time etc. eventually she'll be telling you what's next. If she has the desire to drive, when you get in the car tell her you thought it would be nice to give her a break and ask her directions like she is the boss, even if she has no idea your still driving pretend she is the boss. They need no stress and to feel independence, but they don't have to know your really in charge. Tell her she's beautiful and special and scream in the other room if you have to but don't let her see you stress, "you know" she's not right all the time but "she needs to think she is". At the end of each day have a moment to praise yourself and be glad you are there for her and you made it through that day! You need to be proud of yourself because I am sure no one else will be (except on this site). Unfortunately this is a thankless job but it's rewards come later and it's A Greater Feeling than you'll ever know!!! The reason why your Mom depends on you is because she knows deep down she can she knows you better than you know yourself. Mom used to distract me so she could fake taking her pills. She used to hide evidence of eating things, all because she knew I would question it. Just remember that forgetful is never stupid, LOL that was my mistake she out-smarted me all the time. I feel for it, she knew I would by the sweet act so she could get away with stuff. I look back now, when she was at home with me, and realize that she played me all the time. She thought like a 2 year old on a mission, her focus was on what she wanted and how to get it!!!
Oh, one last thing. I know the obsessive list making is annoying as hell. My dad can't concentrate on a half hour TV show, but he can sit at the kitchen table and go through a phone book making notes for hours on end. At the end of the day, if they aren't writing on the flatware with dookie, who gives a rat's patootie? Just ignore it (as much as you can, I know they can be demanding). You also might speak to her doctor about medication if she's agitated.
Your patience level might be improved if you learn more about the cruel, terrible disease of dementia. It is annoying to have your mother messing in your room regardless of the reason, but you may be able to deal with it better once you understand that she cannot help this. You are so right -- this is not at all like training a young child. She cannot learn appropriate behavior. So you have to take measures like locking your door. Understanding dementia better will probably go a long way toward reducing the stress.
Some of your frustration may go back to before Mother even had dementia. You blame her for not trying to be more independent after your dad died. But to be fair, you must have enabled that dependency for it to take such deep root at your house. This is not a criticism -- you were also mourning your father and you do doubt wanted to be gentle with your mother. But if there was a good time to discourage the dependency, it was then. With dementia, it is just too late now to change that. Being angry at your mother or angry at yourself for this isn't going to help anything.
Which leads me to my next suggestion. Caregiving someone with dementia is EXTREMELY stressful. And if that someone is a loved one you have an imperfect history with (and all histories are imperfect) it is even harder than if it is a client. You deserve professional support in dealing with the very challenging issues involved. Getting some counselling won't change your mother's behaviors but it can help you deal with them with less stress to yourself.
Caregivers absolutely MUST get some respite, and this is especially critical when caring for someone with dementia. No one can do that job 24/7/365. Take ladee's advice and find out what kind of help may be available for caring for your mother.
Learn about dementia.
Get some counselling.
Get some help.
And feel proud of the care you have been able to give your mother all these years. Now be sure to take a little better care of yourself.
Let her make the list and get what you need and nothing esle... she may or may not remember what she put on the list.... if she asks, tell her 'loving lies'.... they were out of such and such....
Have you tried redirecting her when she starts obsessing, or have you tried just keeping the flyers out of her sight??? Sometimes when she is doing this, bring her some clothes to fold... even if you have to unfold them first.... with Alz, we have to do 'creative' caregiving..... and yes sometimes it seems they do it on purpose, hard to tell sometimes... and if she was always dependent on your dad, she is NOT going to change or try to do things differently... and possibly if your brother doesn't want to help, hands on, he could send you some money to get some in home help once in awhile and give you a break...
You can also contact your Area on Aging and see what she qualifies for,,,, there are many things that we just don't know about unitl we start looking for help....
And you haven't killed her yet, so you must be doing a good job regardless of how crazy you feel sometimes....so come back and let us get to know you and we'll help... if nothing else you will know you are not alone....
And my avatar... thats a caregiver after a day like you've been having..... hugs