HealthBoards (
-   Alzheimer's Disease & Dementia (
-   -   How I wish it would all go away, but it won't anytime soon (

caringsister54 01-08-2009 04:57 PM

How I wish it would all go away, but it won't anytime soon
Oh how I wish it would all go away. How can all of us deal with it?

She's been giving Sister a harder time of late with not wanting to eat. Sister also makes it harder on herself because of the river of de-nial. She doesn't like to grind everything up so she won't do it. She insist on putting the entire pill in the pudding or applesauce because she said that when she grinds it up, mother knows it because it makes the pudding or applesauce bitter! How does she know? She said Mother won't eat it so she wants the pill in whole but then gets mad that Mother finds it and spits it out.

When I try to say to Sister that mother isn't herself anymore, she replies "no she's just being stubborn", "Mother is trashing her food. She won't sit 'under the table anymore and eat with her right hand" She sits away from the table edge and to the side (not straight on), and now uses her left hand to eat and doesn't use utensils correctly. Sister then says Mother gets more food on her than in her! and is so angry but Mother pushes the table away from her when you try to put her 'under the table' like normal sitting. Why is she turning herself to the side and eating at a crazy position like that when she's at the table?

I'm trying guys, trying to be so supportive to someone who is as stubborn as my mother is in some ways. I truly wish it will all go away. I realize that Sister is scared that if Mother dies, then she truly doesn't have any life. I mean her whole life for 7 years now has been Mother

I suggested that Sister look for the utensils that are available to stroke victims that are able to be handled better. Mother was throwing her liquid cups so i bought the spill proof sipper cups and Sister had something to say about that!

I'm having my D&C surgery tomorrow for something that they found and I intend to go to a friends house to recouperate. I just can't stay home and know that at anytime I may get dragged into the crap going on next door. i won't be able to walk or stand for long periods for 24 hours nor will I be able to lift anything for a few days.

I'm trying to tell my sister not to let Mother upset her so much. Instead of yelling for 2 hours trying to force her to eat, she should give up in 15 -30 minutes and either sit there and feed her or walk away.

Sister is crying and it breaks my heart. When I say bout the NH she cries that all they'll do is sedate her, that they won't care if she eats or not and she'll die. I said, what's the difference she's going to die anyway. My Sister feels she needs to 'force' Mother to eat because she's afraid of being identified as someone who starved her mother. I said, don't be ridiculous, I know you're not starving Mother. She insists on letting my mother select the menu item to make thinking she'll be anxious to eat it. But then she smashes it up in her fists, or throws it on the floor, or in a corner of a room.

She started to think about Baby Food -- anyone have success with this?

It seems that just when we think doing this works because its a 'good day" and we repeat that action the next day, its a whole other ballgame. I can understand Sister's frustration, but there isn't much I can do. I say "left, sister says right".

I wish it would all go away, but it could be like this for a very long time....

mary09 01-08-2009 05:29 PM

Re: How I wish it would all go away, but it won't anytime soon
Hi Sister....
I'm so sorry to read your post today, I can hear your frustration, and understand it comes from not just MOM but your sister. You can only continue to offer and help, until hopefully one day she realizes she might just be creating a little of her own chaos. My uncle is the same way. God bless him, he is a saint for how dedicated he is to Grandma, but sometimes, I (dare I say) can be a little obsessive. Maybe that's because he's the main caregiver (99% of the time) so he gets this "he knows best" attitude, and I can understand that. Makes it hard to offer advice sometimes....
I hope and pray your procedure goes well tomorrow, and that it isnt anything serious.....will say a prayer for you. I know you are worried about MOM, but take a break, and take good care of yourself over the next few days, okay?
Sending lots of towels your way to get through the next few days and recover.
Love, Caroline xo

Gabriel 01-08-2009 09:26 PM

Re: How I wish it would all go away, but it won't anytime soon
Caring... you need a great big hug today. I will keep you in my thoughts and prayers that your procedure tomorrow goes well and they find nothing to be concerned about. You made a great decision to go to your friends house to recouperate. No, you do not need the chaos next door while you are trying to get better yourself. Take the wonderful advice that Martha and Pam gave earlier today. Back up a little bit. Believe me I know how hard that is but for now you need to take care of yourself for a while!

Sister needs to understand that you can not force somebody to eat. Constand harassment about food will only make the situation worse. You Mom needs foods that she can handle and eat by herself. Soft finger foods might be an idea. Leave it by her chair or where she can reach it and see if she will pick it up and eat on her own.

She may be frightened of putting her legs under the table since she can not see what's under there. Just an idea. It is not unusual for dementia patients to not use utensils. Eventually they need to be fed. Yes, they can be messy but they are doing the best they can and it has nothing to do with intentional stubborness. You already know this. But fighting over food is only going to make it worse and worse.

As for the pill, there is no reason to put a whole pill in any food. They will find it and spit it out. Yes, crushing it might make the food taste different but it's not like your Mom knows there is a pill in it. I would suspect she is more than likely reacting to the constant battle over food rather than any knowledge of the pill being in the apple sauce.

It is obvious from your post that your Mom is difficult and your Sister just as difficult. I can SO relate to your frustration. Didn't you say there was a nurse that came by occassionally? Why not have her talk to your sister about your Mom and food. Let somebody other than yourself try it.

But for right now, go have your procedure and get yourself well. Your sister is the one that has chosen her path and she can deal with whatever for the next few days. After you are recovered and rested you can see what you can do to help your sister understand that she is only frustrating herself, your Mom, and you :)

Love, deb

polina 01-09-2009 04:37 AM

Re: How I wish it would all go away, but it won't anytime soon
We have had our food battles in our house as well. Dad thinks the answer to all of Mom's problems is food. A good hearty meal will cure everything. Unfortunately, he thinks what he is capable of eating appplys to Mom as well and that is not the case. She prefers soft light food. He thinks a big steak dinner will do the trick. I have tried to eexplain till I am blue in the face that You cannot force someone to eat. Mom would much prefer to sit down to a nice bowl of Special k as opposed to steak and potato dinner and this bothers the heck out of dad. So the battle goes on every day. He will prepare a big meal and she will just move it around her plate with her fork like a little kid does when they have no interest or desire to eat.
I tell him let her eat what she wants. However, that can lead to a problem as well because she would prefer to eat ice cream and cookies all day and being Diabetic her blood suger sky rockets after a day of that type of eating. So for now we try to do what we can with getting her to eat a somewhat normal meal. Fish seems to work well for her, but when she was in rehab that is what she had almost every night just cooked all different ways. Now that she is home she is so tired of fish.
Activia yogurt is another good little snack or sometimes ends up being her meal with an Ensure for diabetics.
The battel of food can be very difficult but I decided a long time ago I was not going to try to force her to eat anything I will make it available for her put it in front of her and she has to make the actual decison to eat it. When she was in the hospital my dad force fed her. At home now she would never allow that. It is very hard but I believe like kids they will eat when they have to.

Love P

Martha H 01-09-2009 07:30 AM

Re: How I wish it would all go away, but it won't anytime soon
Hoping and praying that all goes well with your surgery and nothing scary is found.

I get the feeling that your sister inherited her Mom's stubborn streak!

Hang in there, right now you have to get yourself well.



ibake&pray 01-09-2009 07:54 AM

Re: How I wish it would all go away, but it won't anytime soon
First we are praying for you and all will be well. take care of yourself...

Your Mom and your sister are having a power struggle. I wonder who is going to win that one? You sister is refusing to accept that your mother has any issues with food. It's amazing that she accepts that your mom has dementia at all, isn't it? Much as you have had trouble getting her this far, this is just one more step that she hasn't gotten over yet.

Dementia patients often have trouble swallowing food, in addition to the issues that they have with chewing and eating meats and such. finger foods such as cheese and vienna sausages might hit the spot for Mom. they are soft enough that she might accept them. Cut them into half or even thirds, put them out and let her feed herself as she pleases from the side of the table. Tell sister to step back and give her 15 minutes, then take the food away. Try again in another hour. If she gets hungry she will eat. Give her ensure to drink that will help keep her caloric count up. Give her milk shakes.
there are ways around this till she settles down. Mom is not how she way, she is disabled now-ask it your sister I am beginning to think!

But Martha(?) was right. Have the nurse talk to sister about feeding mom. She isn't going to listen to any of us-especially you. But a medical professional knows more than you or i or anyone else and maybe she can talk so sense into her.

AND btw, nursing home don't warehouse their patients anymore. You can tell sister that mom will probably get better care in a nursing home than she is getting from her right now!They will work with her, bathe her, check her meds, feed her, change her clothes, take her on outings, have pleasant round the clock staff......[/COLOR]

caringsister54 01-09-2009 08:46 AM

Re: How I wish it would all go away, but it won't anytime soon
Thanks to all. I am recuperating at a friends house. So picture this friends, I am in her recliner with my feet up. She just brought me a nice hot cup of tea and had gotten up early to make home-made blue-berry muffins! ymmmm.

She just went out to pickup her granddaughter so the house is nice and quiet.

Procedure went well, started at 7:20 a.m. and was done by 8:45. But doctor scared me prior to surgery by saying all bunch of stuff came back from pre-admission testing! -- Supposedly enlarged heart?, blood trace in urine, and high sugar in blood work up and she wanted to know if I had fasted prior to test. We'll discuss everything when I go for a two-week checkup. Not having relations with boyfriend for a few weeks will hopefully want him to want me more (ha ha) menopause in my 40's and now 50's hasn't swayed that aspect, if anything it kicked it into high gear. But I think its because I went without for so much of my married life as my husband's health and the medications he was taking took its toll on that aspect:dizzy:

Anyway just checked in with Sister because when I got up at 5:30 to take my shower prior to leaving, I heard her up with Mom. I don't think that Mother went back to bed so when I was talking with Sister I said to try to sedate mother enough to force her to sleep. I found out last night she puts a diaper on her because Mother doesn't always recognize that she is going but she still gets up to go to the bathroom not being aware she already wet herself. So she's up and down all night long. She's able to 'break through' the sedative's affects during the night with the sundowner problem.

I don't know where I'd be without all of you guys. Thanks a bunch for the good wishes, prayers, and the responses to my most recent problems.

Polina when you say let her go, she'll eat when she's ready. Sister said that she's afraid she'll never be ready. At this point, I truly think that the brains ability to promote hunger has been affected by the dementia but I'm not sure because she can't communication through speech, writing or pointing out words on a board (we tried this) to let us know.

Yet there was a recent time that when babysitting I was reading the newspaper and mother took a section and read the 'bigger' words on the page and did well. But when I actually asked her to read it again, she looked up and the look on her face was like "huh?" This in and out is frustrating to all of us, isn't it. One minute they may have the lights on in their head and a split section later, the power is out.

Love to all

ibake&pray 01-09-2009 12:28 PM

Re: How I wish it would all go away, but it won't anytime soon

Am glad to heara that the proceedure went well. Now rest and recover. The peace and quiet will do you worlds of good. Mind your p's and q's and make sure that you follow the rules from the doc so that you recover fully. You can't afford any slip-ups with the issues you have next door!:eek:

Hope you get better fast!


Gabriel 01-09-2009 01:52 PM

Re: How I wish it would all go away, but it won't anytime soon
Bless your friend. What a wonderful friend you have!! Soak up the pampering for a while and renew yourself. You can deal with the battle next door only when you are well yourself. I am pleased for you that the procedure went well and you can deal with the other problems when you go back to the check up. For now do exactly what you are supposed to and no more.

As for the food. Even if the hungry button is broken you can not force them to eat. You can give them options in a calm unobtrusive way and do the best you can without creating chaos but that's as far as you can go. The more you force the more forceful they can become.... But until you are better let Mom and Sister have their battle and you take care of yourself :)

Keep us updated on your progress...

Love, deb

ibake&pray 01-09-2009 07:58 PM

Re: How I wish it would all go away, but it won't anytime soon
[COLOR="Navy"]Your Mom and sister are going to have this food battle until time ends. Can's sister see this? It is the only hold Mom has over her. She can control what goes into her. She has some of her dignity left and that is what she is hanging onto. Plus it is a POWER STRUGGLE. Right now I'm putting my money on mom.

anyone wanna take bets?[/COLOR]

caringsister54 01-10-2009 03:49 AM

Re: How I wish it would all go away, but it won't anytime soon
I have to agree with you. My money is on Mom. My Sister has a history of making things hard for herself. For the beginniing my argument with her was she planned nothing!, everything was spontaneous and if it results in 3 runs to stores during a week instead of one combined long trip, she felt so be it!, never mind that the kids had to leave for school or I was just leaving to go away for a weekend.

Second argument was when she was forcing the pills down Mother's throat with her fingers and hands and wondering why she was getting bit and Mom was suffering brusing around the mouth from sister holding jaw. That started to abate when I got doctor to talk with Sister about deciding exactly what pills were absolutely necessary and it limited the battles and detoxed Mother.
and the pill crusher was okay for the first few days and then.

third arugment was she wouldn't use the pill crusher. She said she's rather have it as a pill so she knows if Mother gets it in her or not. She complains if she crushes up the aspirin, water pill and the occasional sedative (Ativan) She says emother finds it in the bottom of the Ensure and won't drink it, no matter how well she shakes it up. PLUS I find that sister 'prepares' this stuff in front of mother and then sister says that now Mother won't take anything because Sister says "she thinks I put medicine in everything!'.

One thing about dementia I find is that their forgetfulness is not instaneous as we think. The patients (Mother) seem to remember what they want to remember. So I suggested to Sister that she move the 'medicine location' around so that Mother wouldn't always associate her going into a drawer as the place to retrieve the stuff.

But you all know the dilemmas of dealing with stubborn, dumb, or stupid siblings don't we? People who have to or wants to do things their way so they can play the martyr. I keep telling my Sister to let me do this . . . because I know she'll tell everyone that I was no help at all.

Now with the visiting nurse coming in Sister has to plan in advance what she wants to accomplish for the 2 hours she's there. I told her there's no reason why it has to be just one day a week, if she needs her there two days or more, that's fine she just needs to plan and not just think she can call and within an hour they'll have someone come sit with mother.

For me: Its been a quiet recuperation at friends apartment and she couldn't be nicer. She's older than me by about 15 years but she's friendly and a comfort to be around. She's suffering form cataracts but each time she scheduled her surgery, she's knocked back by a reoccurring cold and cough; hopefully as nice weather comes through, it'll give her time to have it done.

With the intended snow storm we're due to be hit with here in Jersey, I'm debating if I'm better off going home before rather than after the storm and deal with the bad roads. My car is home so I need BF to come get me and drive me but my friend wants me to stay til tomorrow. If I do, I hope the storm doesn't make it difficult for navigating me home Sunday.

Thanks for the guilt transfer but I'm handing it off to someone else now. So whose next to have problems.

Martha H 01-10-2009 06:12 AM

Re: How I wish it would all go away, but it won't anytime soon
We got the same snowstorm yesterday and continuing into today - so far 9 inches here in Middlebury. And counting.

I suggest you stay with your friend. Stay a day or two longer if you need to. Let the ones at home figure out the answers to their hassles without you.

Anyone would think it obvious that the patient NOt know there are pills crushed into her food! It has to be done where she can't see it, how else will the trick work?

On the positive side, most pills don't do what they are supposed to do anyhow.

I panicked the day my Mom climbed up on one kitchen chair, one footstool and a couple of telephone books to get down her pills from where I had 'safely' hidden them ... not remembering the ones she needed for that day were on the table next to her breakfast bowl. I got home to find the chairs still there, the pill case on the table, and an unknown quantity swallowed. I called the doctor. He said relax. If she is awake and breathing, she did not overdose. Of course the climbing was dangerous. He also told me that if she forgets or refuses to take her pills for a day or two or three or four, it didn't really matter that much ... a certain amount stays in your system for many days. You don't need to worry. (sometimes I think we could all take half the dosage and nothing bad would happen ...)

Otherwise I too see it as a battle of wills, and your Mom is winning it - she knows how to push your suster's buttons, and your sister falls for it every time.

Stay where you are, look at the snow through the windows, don't even try to get home later today...



Gabriel 01-10-2009 06:45 AM

Re: How I wish it would all go away, but it won't anytime soon
....But you all know the dilemmas of dealing with stubborn, dumb, or stupid siblings don't we? People who have to or wants to do things their way so they can play the martyr. I keep telling my Sister to let me do this . . . because I know she'll tell everyone that I was no help at all.....

I love that paragraph Caring. It is SOOOOO true!!!!

I'm with Martha. Stay right were you are and enjoy the respit. If you get snowed in for a day that's ok. The only thing better would be stranded on a nice beach in the sunshine for another day!

I'm jealous of the snow. I so want snow and here in NC we rarely see snow and my location misses a lot of the snow in the other parts of the state. I have even been tempted to drive to the mountains just to see the snow. So how about a few snowballs?

Martha, I shiver at the thought of what could have happened with your Mom climbing for the pills and remember the 5 days I spent with Dad in the hospital after his medication overdose. I'm with you in thinking less is better. So far I have given up all medication the doctor prescribed and changed my life style instead. I have also successfully gotten Mom and Dad off various medications and I am working on more. It's a slow process with them since I have a sister that believes in medicating for everything and one that swears the doctor is a demi god and all that she says is the gospel.

Love, deb

caringsister54 01-10-2009 08:35 AM

Re: How I wish it would all go away, but it won't anytime soon
Well ladies and gents -- my girlfriend and I got up and met my boyfriend for breakfast at a local diner. Afterwards she went to get her hair done and he drove me home to let the dog out and get my boots (for the intended snow). As soon as I opened the door, damn if sister didn't come out!!!

I can see she's dragging and tired. Apparently she didn't give mother sedative until early morning because mother woke up at 4;30. The diaper my sister is now using on her at night, twisted and mother soiled herself and the bed so sister had to get up and strip everything off.

She said Mother wouldn't go back to sleep. She also fell last night after my sister gave her the two Ativan tablets so Sister feels guilty. But at that moment when she was telling me how hellish its been, i said well is she sleeping now? she said yes and I said well then you have to do what I did when I had the babies. Sleep when they sleep. She said I know. But then she asked me where I was going and when I said i was going back to my girlfriends, she wasn't happy. She didn't say anything, she just has a knack of giving "that look" of displeasure.

I got in my BF's car and told him to drive away as fast as possible.

Our lives are what they are. After being so involved in my marriagable life which was enjoyable and full of laughter and fun until the nightmare of diagnosis til death. i've paid my dues. I worry about sister but can't do anything about it. She's the one that needs to be worried about mother.

So I am at BF's house now. Let the snow begin.

I do love all of you who write and to all of us who really care for each other. We are strangers in actuality but yet we are close friends in life. Isn't the internet funny. There may be dangers but there's also benefits to it as well.

Take Care
CaringSister54 (also known as Diane)

ibake&pray 01-10-2009 09:38 AM

Re: How I wish it would all go away, but it won't anytime soon
[COLOR="Navy"]This is a breakthough.

Welcome into my life Diane. My name is Jill Michelle. You sister doesn't deserve you, you know. Perhaps we should have been sisters? We could take deb in..she is getting to be almost as outspoken as we are you know.

You sister refuses to do the right thing for your mother when she needs to. She refuses to make your mother comfortable in her illness, which is just plain mean... which in turn turns everything into a crisis and makes your mother even more difficult to deal with. What ever happened to the old "an ounce of prevention is worth a pound of cure."? Giving your mom her pills ahead of time allows her to rest all night calmly and that settles her down. This keeps her from being wound up.

This is something that I learned with my chronic pain. I can't allow my pain to get ahead of me. If I do, I play catch up and it takes me twice as muc meds twice as long to do the job. somehow I would rather take less meds on a regular basis to the work. Sure makes sense to be. It's called being proactive. Can we all say that word together? PROACTIVE. Oh, but then I forgot, your sister is in the race for martyr of the year along with Deb's sister #4 ugly. Funny but I didn't see the sign-up forms out anywhere for that contest.. martyrs are so draining.

Until your sister learns that she isn't going to win any popularity award acting this way, and she certainly isn't helping your mother fact she may end up with your mom at this need to step WAAYY back and let her sink in that hole that she is digging so deep my dear Diane...
And's so nice to know you.... Jill....[/COLOR]

All times are GMT -7. The time now is 03:52 PM.