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Old 12-23-2009, 09:34 AM   #1
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Medications in last stage/doctor's appointment

Hi, my mom is still living with my brothers rotating months. Her condition is as follows: she sleeps or rests most of the day, is helped to the table to eat, but my sister in law assists her in eating because she pauses and stares. Doesn't talk much and just looks around, very quiet and obedient. Pills are put in her food to get the down. She lost about 6 pounds in a couple of months and is about 85 lbs but is about 4 feet 9 inches in height. When she didn't have alz, she would weight about 105. So since 2004 when diagnosed she lost 20 lbs. Is this the last stage? Or is the last stage when she cannot eat at all and cannot walk at all?


She is seeing the doctor January 8 -
Should she go off aricept and namenda? She also takes heart meds like dioxin, metroprolol. If the doctor says to keep her on, is that normal?

What do I do if she cannot walk and she needs to go to the doctor? My brothers want her to remain home for the time being. She still walks but very slow. I just worry about getting her to doctor's appointments.

And if the doctor sees she is losing weight, what can she do? I am all for a feeding tube (don't hit me about that but I made up my mind) - would I have to remove her from their home and put her in the NH for her to have the tube? Please don't talk me out of the tube - we discussed this in other posts and honestly feel that she may be feeling hunger but cannot chew and she remains alive with the tube, she is obviously getting the nutrients.

I am just mostly worried about her not eating and being at home and what the doctor would do about the meds.

Thanks all. I am in so much stress, I believe my sciatica flare-up can be partly from the stress.

Thank you and Happy Holiday.
maryann

 
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Old 12-23-2009, 10:45 AM   #2
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Re: Medications in last stage/doctor's appointment

The last stage varies in time and intensity. There are several residents where Mom and Dad are that do not walk or talk or feed themselves... but they will eat when feed and they have been this way since I first saw them in April. I would consider what you described as the end of state 6 and perhaps the beginning of stage 7. The brain is losing it's ability to tell the body what to do.

My personal feeling on Aricept and Namenda is that they need to be used when they can extend a quality of cognition that helps the patient function. When they have progressed to the end stages of the disease... which the medication was not designed for... it is not helping. But that is something you that you and your Mom's physician and other family members must decide for yourself. We did stop Mom's medication at the recommendation of her doctor when her mini mental score fell into the teens.

Dad is still on his digoxin to regulate his heart rate. I just follow the doctor's recommendation on these types of meds. If they are beneficial to make the more comfortable, and their body is metabolizing, then those we have continued. We did stop all cholesterol medication and other medication that will prevent something in the future.

I will not attempt to talk you out of the feeding tube because as I said before... that is your decision to make. You need to be comfortable with whatever course of action you decide. A lot will depend on what type of feeding tube they use and the ability of the caregiver to learn what to do and be able to do it. It's not pleasant but it can be done at home. You will probably need a visiting nurse to check on the tube as well. That can all be set up by the doctor when and if the time comes.

If your Mom can not walk and needs to go to the doctor you can call for non emergency transport. Most ambulance services provide this service. My Dad's ability to walk is very limited so I have purchased a wheel chair for transport. It's just a matter of putting him in the chair, from the chair to the car, and the car to the chair. So far I have been able to manage this way. When it become more difficult and he is unable to weight bear on his legs I will call for non emergency transport for him.

Stress can cause all kinds of problems. There are some things you can do to reduce your stress level. I find that acceptance of what is has helped me. I know that I can not prevent the inevitable. I can only assist my parents while they are here with me. I gather all the information I can find, make my decisions, and go forward. Yesterday is the past and I can't change that. Tomorrow is the future and I don't know what that will bring. I only have today and I do the best I can in the moment with what information I have. I deal with each day that way. I only have enough energy to focus on the positive. Yes, both of my parents have dementia and I am watching them slip away from me. But i can't stop that process. What I can do is take care of myself so I can take care of them. Make sure that you eat right, get enough sleep, and get some exercise every day. Find some quiet time each day to decompress. I tend to do this on my bicycle and accomplish two of my personal well being list at the same time. I also find time every day to close my eyes and clear my mind. Some call it meditation and some call it prayers... but those quiet moments when you connect to your spirit are necessary. Beyond that assure yourself that you will be ok and you can handle anything life hands you You are what you think so hold on to what is good and right in your life and release the negative. It's not what life hands us that matter... but what we do with what life hands us

Love, deb

 
Old 12-23-2009, 07:26 PM   #3
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Re: Medications in last stage/doctor's appointment

Marypar.
You asked some specific questions, so I'm copying your message and will give you my opinion for what its worth.

she sleeps or rests most of the day, My Mom starting doing this a lot more as we neared the end with her.
helped to the table to eat, My mother walked but had to hold onto walls
my sister in law assists her in eating because she pauses and stares. Doesn't talk much and just looks around, very quiet and obedient.My Mom didn't talk for 4 years. But towards the end, she started falling a lot, and sat at the table, closing her eyes or just sitting there blankly staring. My sister said they seemed like mini-seisards(sp?)
Pills are put in her food to get the down. After a while because Mom saw sister putting meds in food, she didn't want it and started hiding it in tissue boxes, etc.
She lost about 6 pounds in a couple of months and is about 85 lbs but is about 4 feet 9 inches in height. When she didn't have alz, she would weight about 105. So since 2004 when diagnosed she lost 20 lbs. Is this the last stage? Or is the last stage when she cannot eat at all and cannot walk at all?
My mother lost about the same amount of weight. She lost 12 pounds in 2 months time once. It paniced my sister. She started begging Mom more.

Should she go off aricept and namenda? She also takes heart meds like dioxin, metroprolol. If the doctor says to keep her on, is that normal? My Sister swore that when Mom was taking Namenda along with the aricept her appetite was better. However, there comes a time when the body just stops processing whether it be meds and/or food. They may swallow it, but it will just get pee'd out.

What do I do if she cannot walk and she needs to go to the doctor? You can't do anything. If they are with your mother, they'll have to decide the best course of action to get her to the doctor. Or do you have that responsibility. In that case, you'd need to get a wheelchair as Deb explained. My brothers want her to remain home for the time being. She still walks but very slow. I just worry about getting her to doctor's appointments.

[COLOR="green"]And if the doctor sees she is losing weight, what can she do? There is nothing that can be done at that point, except (God forbid) force-feed her. I am all for a feeding tube (don't hit me about that but I made up my mind) - would I have to remove her from their home and put her in the NH for her to have the tube? No you wouldn't need to put her in a Nursing home. If the brothers don't buy in to all the care that goes in with one, then you will have to take Mom in your home if that is what your wish is. The hospital visit would only be to get one inserted since its a surgerical procedure and there's chances of infection.

Please don't talk me out of the tube - we discussed this in other posts and honestly feel that she may be feeling hunger but cannot chew and she remains alive with the tube, she is obviously getting the nutrients
.[COLOR="red"]Since you made up YOUR mind with regards to the tube, there's nothing more we could say or would want to say. However, let me make one thing clear. If your brothers have been the sole caregiver for your mother on a rotational basis. HOW DARE YOU impose your will on them. If I was taking care of my mother and doing well but there are changes that are the inevitable with the illness and my sister wanted my mother on a feeding tube, I'd have my mother packed up so fast and delivered to my sister, it would make her hair stand on edge, so be prepared. You just may have your mother in your home with you 24/7/365 once you dictate to insert the tube. As long as she's eating, no tube would be inserted. She can put on weight with an IV just as much as a tube.

You have to understand that by the time this happens, your mother's body will no longer be able to absorb nutrients. Maybe it would in the first few months, but then afterwards,it wouldn't. You are making a decision that YOU feel comfortable with and I applaud you but you may be cheating your mother out of her wishes. Her quality of life will be forever in a bed with a tube coming out of her that you would use an oversized tube to push pureed, nutrified, cereal in her 6 times a day. /COLOR] There will be bed sores to contend with, there will be numerous leaks, infections, and everything else that's associated with it.


I am just mostly worried about her not eating and being at home and what the doctor would do about the meds. My mother no longer has the desire to eat the amount that sister was putting in front of her. My sister fed her 3 full meals each day and a snack of tea and something 'sweet' at night/each night. My mother ate 1/2 - 1/3 of what was on the plate, no matter what coddling, cajoling, yelling, begging, or crying, my sister may have done.

In Mid-January, my sister gave my mother a sedative for her sundowning so she can get some much needed rest. While doctor recommended up to 4 tablets per day, my sister would only give it to her about once or twice a week and only about 2 of them, but it wasn't enough to give my sister a quality sleep. Anyway. One night she put my mother to bed and said, "go to sleep, I just have to go downstairs and make sure I locked the doors and turned off the lights". My sister went downstairs, sat at the kitchen table, and promptly fell asleep on her arm.

My mother tried to get out of bed to get my sister, and fell hitting her head. She was taken to the hosptial for eyebrow stitches and the hospital promptly claimed my mother severely dehydrated and called social services who immediately took action to remove my mother from my sister's care (I was personally glad; however I wasn't glad when they called me the next day at work and told me that they were thinking of filing charges with the Police against my sister for elder abuse!!!!!) I had a few choice words to say to them, believe me! How dare they They put my mother on an IV drip but she was still unconscious most of the day. We gave them her Living Will/Medical Directive (thank God she had one) In it it clearly stated "Do nothing to prolong my life or delay my death" I asked for hospice help. Oh yeah, they help alright, they help themselves to the dang checking account, if you let them! They wouldn't take Mom until we paid them $8k. I told them we didn't have the money and we'd bring Mom home. Social Services said, "you can have your Mother as long as you sign that your sister would not be allowed anywhere near her" I said for them to screw themselves that my sister was my mother's full-time caregiver. My sister in the meantime had a nursing home ready to take Mom but the social worker called them and told them that we had the means to pay (huh?) and just refused to release my mother's money (wrong!) Anyway, the NH refused my mother after that call.

Our Elder Lawyer recommended that we not visit my mother for 72 hours. She was then declared abandoned and became a ward of the hospital who found a nursing home not 10 minutes from our house. My mother died 3 weeks later. My sister went every single day. I went twice, once when my sister said, I think they put a feeding tube in Mommy -- I went to make sure they didn't and they hadn't. and the second time to just see that she was being made comfortable as can be. My sister sat every day, 7 - 9 hours per day, I forced her to come home each night. My mother died at 1;45 on February 15th. We followed her wishes. We have no regrets. And the one person I care about -- my sister -- absolutely had doubt and spoke to our priest on numerous occasions. He said we must not only honor our Mother with following her wishes, but we have to honor God's will.

My mother had a wonderful life -- one of 11 kids, met my Dad, married, had two kids, and had not only one house in her lifetime but two. She got to live her life and now it was coming to an end. Would my sister want her to live longer and possibly forever, absolutely. Would that have made my mother's quality of life good --absolutely NOT.

You can't see it now because your mother is still around; walking and such. But I bet your brothers can see it coming. You are on the outside looking in. You need to be there 24/7/365. Why not go to your brothers and stay for 2 - 3 weeks, helping care for your mother? Then you will see that a feeding tube is only going to do one thing -- feed your own self with thoughts that you are doing right by your mother. As I said, if you want to fine -- but it will probably be at your house because if I were either of your brothers, I would fight you in court and probably win since we are the mother's primary caregivers.


 
Old 12-23-2009, 08:46 PM   #4
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Re: Medications in last stage/doctor's appointment

I don't have a lot of "right" to join this discussion as I haven't been part of it at all. But I must - I MUST - pipe up on the whole "feeding" issue.

Daddy moved into our 3rd bedroom May 14th, 2009. He walked in the house under his own steam. He went outside a week later to sit in his car. May 21. He was walking in the house with a cane and the walls until August 5th. He was "well" enough to whip my daughter with his cane on July 4th. He was demented as hell, losing weight but still upright till August 5.

On August 10, he was unable to eat anything but baby food. He HATED it. His meds were crushed and put in yogurt. He made faces as the gritty stuff went down.

August 12, he refused his yogurt and baby food. August 17, he died.

Short synopsis of daddy's eating. And here's what I learned, for what it's worth, from the professionals that were in charge of his health:

An NG tube (feeding tube) would prolong his life by weeks, months, maybe even a year. I could have had another ENTIRE YEAR of my daddy's presence. YAY! Oh wait - maybe not "yay!" - that year would be bedfast as his body was breaking down and he could no longer bear weight on his feet. Bedsores, catheter, diapers. Staring at the walls or the yammering tv. No matter how much I would pour into his tube, he would continue to lose weight because his body would not absorb the nutrients. His mind was gone, but he would still have flashes of lucidity and realize that he was in a helluva a mess. But. I could still have him around for another year!

How incredibly selfish that would have been of me. How needlessly painful for him. So I let him not eat. I let him not drink. I let him die.

Because it was his TIME to die. I had no right to interfere, as much as I wanted to.

It's a matter of prayer, of morals, of conscience. And for me, although I deal with guilt on a daily basis, it was what I SHOULD have done. And we all have to live with our decisions.

I hope you can live with yours - just like I have to live with mine.

...lil' deb

 
Old 12-24-2009, 07:27 AM   #5
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Re: Medications in last stage/doctor's appointment

Thank you for the responses. When mom needs a feeding tube I am prepared for her to be placed in a nursing home. I have spoken to Catholic Priests and also have contacted the BioEthics Organization that advises the Vatican on pro-life issues, and was advised that a feeding tube is the correct way to go with alzheimer's patients. Food and water are basics of life and my mom could be feeling hunger and cannot chew or swallow but is feeling the pangs of hunger. I cannot take that chance. My brothers have no say in the matter since I am the executor of her will and health care proxy and I know my mom, as a devout Catholic, wants to do what her church teaches.
In my opinion, God's will for my mom is to be nourished and not starved to death if she cannot swallow whether or not she can absorb nutrients, it doesn't matter - He will take her when He wants but I will know I did the right thing.

I am just concerned about getting her to the doctor which she goes every six months. Next appointment in Jan. 8 - I am hoping my sister in law, who is watching her now, comes with me so she can let the doctor know what's going on.

Thank you again and please understand I am not argumentative about the tube. It's just my opinion and I thank this board for all the help and advice I have been give over the last few years.

I also want to come back when other things pop us.

thank you,
maryann

 
Old 12-24-2009, 09:40 AM   #6
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Re: Medications in last stage/doctor's appointment

MaryAnn come back again and again we love having you on the team. Take no offense to our opinions and we don't hold anything against anyone who doesn't agree with any of us -- ask DGabriel. Her and I are sometimes on the opposite side of the fence but we are both on the same team -- to help someone else.

God Bless -- know what we love you. Carry that in your heart as you go forward and come back any time, many times. We love hearing from you

CaringSister

 
Old 12-24-2009, 12:05 PM   #7
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Re: Medications in last stage/doctor's appointment

Maryann-

PLEASE come back often! This place will save your sanity -or what's left of it - and yes, we WILL disagree. But it's truly in love, my new friend.

When daddy was getting bad, I had so many of the angels here type to me such missives as "PLACE HIM!" "SAVE YOURSELF!" "DON'T TRY TO DO THIS ALONE!" - and it's because these people LOVE me.

And you know what I did? I blew them off. Yep. I ignored their (wise) advice, kept daddy right here with me, and held his hand as he died. I am currently in counseling because watching someone die - and I don't mean "take their last breath" - I mean the 6 day process that I did not expect - is horrific.

And you know what these folks did? The very folks I ignored? The very "family" I blew off? They held my hand and comforted me while daddy went through the process and I watched it happen. No hard feelings. No revenge. No "I told ya' so"s. Just love, pure and simple.

They were up late at night and early in the morning during the last days, looking for my posts and answering within minutes. They prayed for me and with me. They sang songs to me ("Cherry Pink and Apple Blossom White") when he died, and they held me while I tried to make arrangements. They never left me.

These were the folks I ignored.

Should I have listened to them? Maybe. Probably. But I had to do what I needed to do to deal with this. I had to talk to my pastor, my church friends, my family, and the angels right here. I had to do what my heart, my God, my soul told me to do, damn the torpedoes and straight ahead.

And that's what YOU will do, too. But we will tell you in no uncertain terms what to expect. It may be icky, horrible, horrific, terrible. But that's what we do here. We spit it out with no cotton batting.

Know why? Because we love each other, and that includes you. Yep. That includes you. It's not fair of us to lie to you, so we won't.

So come on back, friend. You are welcome, cared for and loved right here on this board.

...lil' deb

Last edited by skimps46; 12-24-2009 at 12:09 PM.

 
Old 12-24-2009, 07:38 PM   #8
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Re: Medications in last stage/doctor's appointment

Maryann.. you are always welcome! It matters not if we all agree 100% on every aspect of this horrible disease. We each have to take the suggestions, opinions, information, and experiences of the others and mold them into what we need for ourselves.

The final decisions we make are based on OUR interpretation of what we have learned over a lifetime. For me... I can not maintain that I know God's Will. Different experts have different opinions.. it all depends on which expert you talk to when. If my Mom or Dad ends up in a situation where they can not swallow or cannot absorb the nutrition... is it my place to intervene and force feeding or is it my place to let God's will be done? Will my parents feel the discomfort of the tube? Will they feel pain from the invasive procedure? Will they feel the pain of pressure points and bed sores? What torment will they mind know as they lay unable to communicate being kept alive? Is prolonging suffering humane? Man invented feeding tubes... just as Man invented birth control, gene splicing, cloning, and assisted suicide. Just because it is available it doesn't make it God's will that we use it. That is my view on the subject and it is different from yours but for each of us our view is the valid one for us. Even if we agree to disagree on this issues I will always support you, be here for you, help in any way that I can, and lift you up in my prayers

Love, deb

Last edited by Gabriel; 12-24-2009 at 07:39 PM.

 
Old 12-25-2009, 03:10 AM   #9
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Re: Medications in last stage/doctor's appointment

Dear Maryann, you will do what is right for you, and somehow your brothers and you will come to an agreement. Don't let this issue get you down. One way or another, the solution will be found that all of you can accept. Just keep communications open. The worst thing is when you lose a sibling because of Alzheimer's in a parent. I almost lost my sister and we still don't have the same close relationship we had before Mom's illness and death. I miss her.

Love,

Martha

 
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