2 weeks ago when I wasn't home, sister needed someone to sit with mother while she did errands. One of my kids was away and the other kid had one foot out the door to go to work even though I stressed on more than one occasion that my kids couldn't and shouldn't be required to take sit and care for Mom.
Sister called Visiting Nurse to see if they could come not knowing she had to set up an account with them, etc. But the good news was she actually relented to a home-visit appointment.
Wonderful nurse/evaluator arrived. After a few minutes Mother pitched a fit and sister got a chair for her to sit with us in the dining room while we talked. Mother pitched fits off and on, slapping and pitching the hell out of sister because (God forbid) sister was talking to nurse and I. I now found out since then that Sister's other arm is all black and blue from these types of outbursts.
Wonderful nurse stated to me when sister was taking mother to the bathroom that she (meaning sister) should not be dealing with this, that mother is worse than what they thought and mother should be in a nursing home. Sister came back into room and I had wonderful nurse repeat it to her. Sister got a little upset but she exhibits quietness when she's upset and just simply stated, I"m not at that point yet, she's not always like this . . .
Nurse asked if Mother was sedative?, sister said 'no'. I stated that sister really doesn't want to sedate mother. She perceives it as making mother into a zombie. Wonderful nurse said that they will look around for a nurse to assign but if mother isn't sedated, we would probably have a problem finding someone or keeping someone. Anyway, I talked with sister each night and finally got her to call the doctor. there's an appointment tomorrow. I tried to explain to sister that whatever they prescribed could be just mild enough to make Mom more manageable. Who knows she may be able to go back to the Adult Day Care Center. We'll have to see. Please, please keep us in your prayers.
Thanks everyone. Coming here has been a blessing in more ways then one. Sister seemed truly amazed by my postings. I guess no matter what I said, she actually didn't think I cared. I'm just not able to 'care' hands on. As I explained to Wonderful nurse--My sister chose to care for mother, I'm cocnerned for sister, if we both got involved in mother's actual care, etc., we'd be in constant battles becasue we see things so differently. Its a lot easier if I just stay out of it but support her emotionally for whatever decisions she makes.
If you cannot do the hands on caregiving, then please do give your sister 100% support as she tries to deal with this almost inhuman situation. With pinch marks up and down her arms, she is being physically abused. I wonder what her psychological reasons are for keeping Mom at home with her under such obvious abuse. I am glad Mom will get some kind of sedation and maybe even be able to go to the day care center again --- but, meanwhile, your sister is using up her own resources, putting her own health in grave danger, and making her life a misery, unnecessarily.
Once a clear seeing outside professional person recommends a nursing home, this really ought to be the path taken. At the least your sister or you should be looking into all the facilities in your area, finding out what they cost, visiting them to see how good the care is, making plans for the time to come. Remember, these patients get worse before they get better. (in the final stages they are usually so apathetic that they no longer are dangerous to themselves or others.)
Please stay involved as much as you can, give your sister some time off, listen when she needs to vent, don't criticise her, and gently but repeatedly advise a GOOD loving NH ...
I wish my sister had been that helpful. I was the live in carer, she was outside, several states away, but when I needed to vent she accused me of exaggerating Mom's condition, making myself important, advised me to quit my job and stay with Mom 24/7, and in the end actually said Mom would be better off alone than with me. She vetoed a NH, she was aganst a HHA, and refused to pay her share of having such an aide for all the hours I was at work, saying Mom sleeps until she comes at 9. Mom never slept that late and did some terrible things during those hours alone. I could not talk to my sister about it, she was only dismissive, saying "it's all your fault" and ''you only need to get Mom to drink more water" or "stop her from watching so much TV" etc.. Many half thought out answers, no real help.
I completely agree with Martha........whatever help you can give your sister will be wonderful.....support her and be there for her emotionally as much as you can, as it is a tough road she is on.
My uncle walks that road, and my mom is his only sibling to provide support. Although she is 3000 miles away, her support is what keeps him going, having someone to "talk" to, and bounce things off. His other siblings are the opposite, and actually make things "worse", by the fact that not only are they unwilling to help, but they like to add fuel to the fire.
So God bless you for looking out for your sister.....although you may not be there all the time, that support is a lifeline, I've seen that for myself.
Love, Caroline xo
You now have agreement of an impartial outside source!! Excellent.
There is nothing wrong with admitting that you are not a hands on care givers. You are supporting your sister in the ways that you can. I can't tell you what drives some to do more than they should. It's a mind set that is difficult to understand. I have been there and it took some good head knocking to get me out of it. Now that I am.... I am so very thankful to those that knocked my head
Your sister, for some reason, has decided it is her mission and duty to care for you Mom no matter what. You are kindly leading her to see that she can not and should not do this to herself. There are medical interventions that can help from medication to placement. They are there to use, not only for your sister's benefit but your Mom's benefit as well.
My Mom was angry, depressed, aggitated, and generally miserable. Yes, she did hit a few including Dad, the care giver, and me. Now she is on anti depressants and anti anxiety meds. We didn't do that for us.... we did that for HER. She is not much happier than she was. You might want to explain to your sister that when her Mom strikes out at her it is because she is depressed, angry, aggitated, upset or otherwise misesrable. Does she want her Mom to stay in this emotional upset? Medication to control emotions outburst is not sedating. It is not making a zombie out of them. It is calming and allows them to enjoy life. Just watch for behavior changes and possible side effects. It helped us to log any unusual occurances so we had a pattern of what was going on. Something that happens today and twice tomorrow is easily forgotten unless you have a journey of it. Then you see the patterns developing. I used a pocket calendar and put simple statement like "Mom upset" or "Mom refused to eat"... then you can look back at the month and sometimes you go WOW!!!
I agree with Martha. Even if your sister is not ready to place your Mom you need to go check out the local facilities and see what they have to offer. That will help your sister also. She will be able to see that they are no longer warehouses for the dying but a safe secure environment for the living to enjoy the rest of their life. Since Mom and Dad were place I realized that I could not give them what a good facility can give them. There is no way I could do as much as three full time shifts of well rested care givers, a house keeping staff, a kitchen staff, a full time nurse, a doctor in facility three days a week, physical therapist in facility 4 days a week, a recreational direction, a social worker, and all the other staff that help care for Mom and Dad on a daily basis. There is no way I can do all that they can do
I do agree with you about the children. If Grandmother is combative then they don't need to be responsible for her. Perhaps if medication intervention helps then they can watch her for an hour but I would be cautious.
I am glad you got the help of the visiting nurse to get your point across to your sister. You are definitely a caring sister. Keep on doing what you are doing!!!
Thank you for coming in and providing your feedback. I've always been around. I take a lickin but keep on tickin so to speak.
My daughter has a difficult time being around her grandmother because she wants to remember her for the way she was not as she is now and also is afraid that if something happens to grandma on her watch, my sister will never let her forget it. She's probably right on that count.
My son who is 3 years older than daughter seems to be able to joke around with grandma still. She always laughs at his shin-na-agans! But since she needs help with her bathroom trips, its not something I want him to take care of.
My daughter told my sister that she'd rather go to the store for her than to be left alone with Mom.
All of us is right nextdoor (duplex living) and we always ahve our cells on so she can reach us. While I would like to give sister time to go to the store and be around people, I guess doing her shopping is the easiest of all because if I'm left with Mom and I'm attentive to her, she pitches fits and won't sit still. If I go over and sit there reading or pretending to nap, Mom will sit there and not be too agitated.
I told Nurse Evaluator that Mother gets agitated if sister leave the room, talks on the phone, or goes out.
We'll see what tomorrow brings. My prayers are that sister will be honest when talking with the doctor and tell her exactly how it is. I have a feeling that she will make excuses for everything. I'm hoping to get over to the doctor when sister is there with Mom. When I talk with her about the sedatives, or we talk that the Day Care Center told sister that mom needs to be given anti-anxiety medication, etc. all I get is "I'll think about it". My frustration is that its been this way all through our lives. She's always 'thinking about things" but then doesn't deal with the issues. She's a procrastinator about a lot of things as well. Its like if she doesn't do anything, it can't be wrong.
thanks for all the shoulders and support. I look at the threads of these messages as strings that I'm holding onto.
Keep hanging on and keep encouraging your sister. It is difficult to step out of your comfort zone and do something different and sounds like that's what may be going on with your sister. Just keep talking to her. Hopefully you can be there at the doctor and AHHUMMM her into telling what is really going on. I have seen the difference in Mom with the right medicine cocktail and it's amazing how much happier she is. I think that's the point you need to impress upon your sister. It is about your Mom being more comfortable and happy.
Some kids deal better than others. My daughter is more like you son. She love to visit with her grand parents and keeps them entertained and laughing most of the time. A couple of the other nieces "don't know what to say" and don't deal with the confusion well. The other three just bring the great grand children and let them do the entertaining I do understand your concern with your son and your Mom's bathroom needs. It can be uncomfortable but I have had to learn how to help my Dad. How old are your children?
I guess when you are with Mom you need to take a good book. I tend to play one parent against the other. If Mom is acting out I will find somewhere she wants to go and tell her that Dad and I are going. She can come of sit there and pout. She usually comes with us. If Dad is acting out I just take Mom for a walk and he's usually calmed down by the time we get back. Sometimes I do just sit and read or watch TV. They seem to appreciate the break when they don't have to think.
We have tons of towels which are great for hanging on to, crying in, waving in surrender, popping the people that need it, or just wiping our brow. Take all you need. The towel is the most important thing you can have with you and a trip through the galaxie.... to planet ALZ. Just ask anybody that has read the Hitchhiker's Guide to the Galaxie... or watched the movie
Hang in there and let us know what happens at the doctor tomorrow.....
Re: Okay so here's the latest -- its like a spaghetti western ha ha (old that is)
Okay I want to s c r e a m ahhhhhhhhh, now that I have that out of my system whew that felt good.
Okay ladies and gents I did it. I actually got through my own company physical, had a short meeting with my department people, left and zoomed down to the doctors only to find that I was a friggin' 45 minutes early!
So I said, okay, what could I do now? go back to work? or wait? I waited and decided to make good use of time to go eat lunch since I rarely do that. when I went back to doctor's office I had to wait a short time and I hear (literally hear my mother coming down the hall -- "ah ah ah ah" -- all the way down. When the door opened and I popped up and said "hi!" the smile Mom had and she actually chuckled and pointed me out to my sister.
Well, we went in and waited and waited and waited (why do they do that?)
and Mom is getting agitated while we are waiting. Sis started to undress Mom and I said what are you doing? I thought we were just here for a talk to get her a sedative and sister said "well no, they always give her a physical when we come". I walked out to give my sister time to get her undressed if that was her desire. My mother pitched a fit so loud all could hear her! -- I went in and said "just leave her, if she is to have her heart checkd, they can lift her shirt, etc.". so we did.
Young lady doctor came in. She realized instantly what the communication level is between Sister and I. Cutting to the chase, she wanted to know what we came because she wasn't going to stand there and get between it and I didn't blame her one bit. I said, basically we need a sedative because she's become combative with sister and sister is all black and blues plus mother is not sleeping and sister isn't getting proper sleep. Plus mother is fighting medication each day and its a 45 minute to an hour battle.
Dr. gave mother ativan prescription (lightest dose) since sister didn't want strong -- making mom a zombie -- type medicine. But also stated that sister must realize this is not getting any better and won't. My sister actually thought aricept stops the progression and the patient doesn't get any worse. I said I told her 'no it slows it because that is what people shared on Healthboards.com". The doctor thought it was great that I came to this site and told sister she should use it to learn from others. She also recommended sister make an appointment with psychologist so she can talk about mother's failures and know what's coming down the pike. Sister said that its not necessary.
She also saw how sister makes excuses for each of mom's failures when we spoke of bathroom control problems, etc. saying it was "x" that I was giving as a softner or it was "Y" that I gave her to eat that night.
The doctor told her that its not about what she did or didn't do, she has to understand mother isn't in control anymore. She sees sister talking to mother as normal and tried to get sister to understand that mother's brain is basically like a 3 or a 4 year old that while she understands, can you pick this up and hand it to me (after repeating it 5 times)?, when she hands it to you she's not your mother handing it to you but a child who sees that you want her to pick up something and hand it to you.
So everyone. We'll see how the ativan works. She's to give it to her when she's agitated or definitely at night each night and if one doesn't work, give her two at night so she can get some uninterrupted sleep. The doctor thankfully reviewed all other medications and eliminated the lipator, foxamax, and some other things such as a diaretic, they were able to change the aricept for a patch to eliminate a lot of the battles sister was having with mother in taking her medication. She also said, if mother becomes a problem, don't feel it necessary to give the medication that day or at that time, try again later or not at all. At this point, its helping very little anyway.
That's it for now. To all caregivers GOD BLESS YOU ALL. I don't know how anyone and sister does it. I'll keep in touch. Thanks for the towel.
You did good caring. You sister is in denial. It is good that you were there and could give the real story. Ativan works well for Dad and Mom takes it in combination with her antidepressent. We call it.... the happy pill! It should take about 20 to 30 minutes after she takes it to see some calming effect. We tend to give it and then leave them be for a while coming back after the meds take effect and start again.
I also agree with the doctor taking your Mom off the Lipator, Fosimax, and the diuretic. Lipator is for cholesterol reduction and Foximax is for building bones. Both are long term acting meds with no immediate effect. My parents are off those as well. The diuretic causes her to go to the bathroom more often which is NOT good idea.
It sounds like you Mom has a great doctor that is aware of the problems of the elderly. That in itself is a blessing. Hopefully you will be able to help your sister have a better understanding of the disease. You might get her books to read as well. "The 36 Hour Day" is a good one. Or check the Alzheimer Association for material they have which is free. I have a great book called "Pressure Points, Alzheimer's and Anger" which came from the Duke University Family Support Program that addresses such anger. You can also invite your sister to join us.
Keep doing what you are doing..... you are doing good
BTW..... the towels also work to muffle the yells hehe
Being in denial is a disease in itself. I had no understanding for my sister at the time, because I was just too hurt, nerves too frazzled, and could not believe she - my older sister - was not supportive but more like combative.
Later I remembered something Mom had told me years before. When my father died, everyne tried to get Mom into reading books about being a widow, going to a group of widows, everyone kept talking to her about the chalenges of being a widow. Mom was in denial - in her mind she was not 'a widow' but still herself! The pastor handed her yet one more book about how life changes once you are a widow, and when she saw that hated and denied word, she threw the book at him!
That is the feeling your sister may have about Alzheimers. She wanted to believe Aricept had brought it to a standstill. She doesn't want to get on a website and find out anything that might contradict her wish. Denial is like wishing you will win the lottery, and not looking at the numbers in case you were wrong.
If she is in that state she doesn't want to come here and find out the horror stories others are going through, that would only reinforce her deep down fears she is trying to get rid of by not believing any of it is really happening. She could benefit from a few sessions with a good counselor, but likely would never agree to such a thing for fear of what may come out, which she is trying to keep in. Does this make any sense?
Anyhow I learned to feel sorry for my sister instead of condemning her .. gradually. She just could not deal with it at all, and until Moms life ended, she continued to proclaim that Mom was sharp as a tack right to the end. She even informed the (substitute) pastor who performed the funeral ceremony that Mom had been bright and intelligent right to the end, and he used that in his sermon. Quite a few eyebrows were raised.
Oh wise Martha. You and others here are the unsung hero to many. You are right and its not that I didn't know it. My sister being 4 years older than I always seemed to defer to me. I'm glad that she has a back-bone and the strength to argue but that's always been the way she was with me. Only now she's the mother tiger, fighting for her cub (again reversal of roles of parent and child).
My sister's way to deal with unpleasantness or stuff she doesn't want to face is to close her eyes and go somewhere mentally. I use to scream at her and say "I'm not going away, so when you open your eyes, I'll still be here and saying the same thing". -- this was all through our lives.
I'm sorry that my sister can't adjust or accept. Or maybe she is accepting. . . but she's accepting that this is the role she needs to play or can't avoid playing. It may also be her armour she surrounds herself with to avoid dealing with other things such as getting a job after not working for 7 years, and possessing limited skills that won't necessarily match this day and age. I mean in truth, I'd probably have problems finding another job if I wasn't working where I am for as long as I have. I don't even match the entry level skill-set my company now requires. Gosh, they'd like even the lowest level clerical support to have some college!
Anyway, I digress . . . The day I had my breakdown with her and just said "I had it, I can't deal with you about Mom", so you'll deal with Mom, all the doctors, medicine, etc and I'll just live my life" is the best day I ever had. I emotionally couldn't get sucked into the abyss of this nonsense at the time it was starting to peak. Which happened to be short weeks of losing my husband and trying to find what my life would be like as a widow. She thought that after my Mikey passed, I would move next door with her and Mom (with my adult kids too). She felt that she needed to take care of me but I was always the strong one, as a child and as a wife and mother and I knew that no one could be responsible for me but me. While now I suffer bouts of depression, I know that I need to answer to myself for it. when and if I need supportive help with medication, I'll do it. Today and most days, I'm able to do it with the support of a man who loves me and the memories of the one who loved me before.
I just need to make sure that I have sympathy for sister but not coddle her. Once all this is done, she'll have to go back into the real world, get a job and be able to support herself.
PS about life as a widow: I was young enough when he passed, being 52. Determined to show my kids that I'd be okay so they didn't feel torn with worrying about me and living their lives as they should, I signed up to dating site and was blessed with meeting a wonderful, kind, sensitive, caring man who lived 15 minutes from me and it turned out he use to work for my firm years ago and we use to pass one another in the halls and cafeteria.
I'm not necessarily the center of his existence as I was in my marraige, but he is a single Dad and his son is everything to him. Our relationship is a companionable one. Our times together allows me to vent and find support so I can be support to sister while she chooses to walk this difficult walk.
But no matter that, I may not be walking shoulder to shoulder with her, but I'm walking silently in her shadow to make sure she is alright. While its cold there, at least I know that when she turns around, she'll always see me there. That's all I can give her for now.
Martha, Deb and any other, thank you so much for your continued guidance and caring. You guys are the best
What a great explination of denial Martha!! You are dead on right with everything you said. I know exactly where you are with your sister Martha, I am there with mine And Caring... you have such a healthy refreshing look at life and what is. You are definitely a survivor.
One of the things that fascinates me about denial is how adamatly the person denies the denial. The brain is an amazing thing. When something is just too difficult to deal with the brain shuts it off and we don't even know it's gone. It is a survival instinct that bodes us well when it comes to some situations but deters us in others. Hopefully at some point your sister will come to terms with reality. You just keep doing what you are doing Caring, be there when you sister needs you and keep trying to gently lead her.