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Old 01-01-2011, 05:31 PM   #1
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New Here, has 85 yo dad living with us with stage 3 dementia

Hi All, I have been trying to read the messages on this board, it is all so overwhelming to me... My 85 yo dad moved in with us 3 years ago, he was in good shape then. He has very slowly gone downhill, no longer driving, has mild COPD, mild CHF, but his mind has been going in the last several months, much more so in the last 3 weeks.

I think he is starting to have sundowners.. symptoms start near bedtime (7PM), he starts talking wierd, then it is a battle. Of course, when he is like that, I can't get him to take his night meds... so we moved the night meds to 4PM and then tonight his mind was slipping right at 4PM. When he is in this 'state'; he wont swallow those pills, he says 'it wont work' and then he opens his mouth and drools those pills all over.. very concerning to me, we have 3 small dogs.. we only do pills in a closed room away from the dogs, but I am really scared and nervous. I have been studying up on sundowners, alz and demential.. I am learning that "I" must stay in control, not yell at him, not try to reason.. it is hard... I am such a wreck.. we sometimes give him benadryl when he recovers from these attacks (anywhere from 20 min to 3 hours). Once he 'comes around' he asks for a 'sleeping pill' (either a tylenol or a benadryl) and he goes to sleep... of course "I" watch him half the night, fearful he will awake, but he doesn't...

Do patients live many, many years with this demential or do they succumb, or most likely from another illness?? I don't want to put him in a home, I am really, really trying to keep him... he has an 8 hr a day caregiver, but the issues are ALWAYS on my shift... I do work during the day.. my husband and I have given up our social life to care for him, one of us always has to stay home on the weekend, if one of us should go to the store, the bank, a haircut, etc... we hate our lives now... we are still trying to keep him out of a NH, but I don't know how long that will be... reading the other messages, my problems seem minor... at least dad know what is happening for part of the time... some of you have it much worse..

The doctor recently prescribed Ativan .5mg for him, 1st pill was given tonight, don't know if he actually swallowed it or not.. will see as the night goes on... thank you for letting me ramble... pray for me...

AnnaMarie

 
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Old 01-01-2011, 09:13 PM   #2
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Re: New Here, has 85 yo dad living with us with stage 3 demential

Annamarie,
Hello ... and while I'm sorry your dad's illness led you to the board, I'm glad you found it because the advice I received here while caring for my dear MIL was invaluable. You seem to have a good grasp of the disease and your dad's current state, but the other ladies here are very wise and I'm sure will be responding soon to share their journey with you. It breaks my heart that you say you hate your life and what it's become for you and your husband, and I totally understand. My husband and I worked full-time, had a young daughter and he was back in grad school while we were caring for both his elderly parents and it was overwhelming ... as much as you love your dad, it just might not be possible to keep him at home ... the sundowners will likely progress, and then that phase of the disease will pass, but then you'll be faced with different challenges. Some of the folks here did care for their parents at home until the end, and many opted for a care facility where staff are refreshed each shift so no one is overwhelmed and your dad's needs can be tended to. This is a cruel disease with no easy solutions ... you just do the best you can and find some peace in that at the end of the day.
Take Care and Know that You are Not Alone!
Shell

 
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Old 01-01-2011, 11:24 PM   #3
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Re: New Here, has 85 yo dad living with us with stage 3 demential

AnnaMarie Hate you needed to find us but glad you did. We have all struggled with this disease. Some for a short time and some for a long times. I know the members of this board pulled me through some difficult times! It is a great place for real experiences, listening ears, strong shoulders, and perhaps even the occasional piece of information that helps

The first rule of caregiver is that Dad is ALWAYS right! There is no battle and there is no argument. He is right. If he tells you there are green men in the bathroom do shoo them away. Validate and agree.

As for the medication... what pills does he get at night. if he takes medications well earlier in the day then move everything to that time of day. It was a good move to give them earlier in the day. It is just that sometimes you can't predict when uncooperative moments will come. You might try putting the medication in food to see if he will take it that way. I dropped Mom's in a hand full of M&M's before. You do need to check with the pharmacist before crushing any medication but if it can be crushed you can mix it into anything... ice cream, pudding, yogurt, juice. Some medications also come in liquid form that can be put in his drink.

Has your Dad been diagnosed? Is it Alzheimer's, Vascular Dementia, or some other form of dementia? Is he under the care of a general practitioner or a geriatric specialist? It is important that you have him checked out and rule out any other causes of these episodes.

I am not a fan of Ativan. That .5 mg of Ativan is the first drug that a GP orders or any behavioral problem and it rarely does the trick... and if does, it doesn't work for long. My best advice is to see a Geriatric Psychiatrist or Geriatric Neurologist, explain the behavior, and get the medication he needs. Mom and Dad both started out with that same prescription. Then it was upped to 1 mg and then 2 mg... and soon they were on something entirely different that actually helped. Ativan is a short acting drug. It is a roller coaster for the patient. Hopefully it will help your Dad but know if it doesn't do what is needed... there are other medications that work a lot better.

My Dad lived for 10 years after his diagnosis with Vascular Dementia. Mom is in her fourth year diagnosed with Alzheimer's. She had symptoms for 2 years before her diagnosis. It is not a quick disease. I will say, that in my case, the first year was the most difficult. It was when I had to learn, understand, and come to grips with the facts. The first year of Dad's diagnosis and then years later the first year of Mom's diagnosis. There are so many decisions to make and changes to adjust to. Ideas that we have in the beginning... they just do not work in reality.

Mom kept Dad at home for the first 6 years. She refused to place him in a care facility. After her diagnosis she swore she would never go to a care facility and wanted me to promise that I would never "put her away". My sisters didn't want to place Mom and Dad. But with two, there was no way we could keep them at home. We tried for a year and it was a constant drama of chaos followed by disasters. I spent most of my time with them and not with my family. Care giving at home can be all consuming. Even with in home assistance you are tied to the house. Somebody has to be with Dad. You are worn out from working and then staying up all night with him. You are short tempered due to the exhaustion. Your exhaustion makes his anxiety worse and his anxiety makes you even more short tempered. You are angry with him which makes you guilty. The cycle is truly hard to break when you can't get any rest. Even when you sleep you have one ear on Dad.

A good facility is far from the worst option. We all want to keep Mom or Dad at home. We want them to be who they were and remain with us until their last days. But with dementia this is not a very good option. The disease is progressive and takes years to reach the end. Even when we know we are totally and completely exhausted we think we can do it one more day. Then you end up in the hospital yourself because you have ignored your own health for his.

No, I didn't want to place Mom and Dad in a facility but I also knew it was the ONLY solution. Dad actually enjoyed his time there. He loved the socialization and activities. Mom... it took a little longer for her to adjust and she needed medication to help her adjust. But I have not regretted placing either of them. Dad died last March surrounded by family... and a staff that loved him. Mom is still in the same facility. She has fresh faces every 8 hours and a large ancillary staff to do all the things I could not do for her at home. There are activities geared to her abilities, the proper diet, staff there at all times to assist her. They are all trained to deal with dementia and do it well. I do go several times a week. But when I am there, I am able to enjoy her. I am not worn out from long days and even longer nights. I have my life back and I am taking care of Mom. Taking care of Mom does NOT mean that you have to do it all yourself.

Even if you are not ready to consider placement at this time, please check out what is available in your area. Find the places you would be willing to move your Dad. Check out the facility with the State regulatory agency. Talk to other family members who have loved ones there. Visit the facility several times at different times of the day and observe the staff interaction with the residents. Check out any inspection agencies and see what the facility ratings are and any deficiencies they might have. Do your homework even if you don't think you will use it. I say that because you never know when the time will come that you need it. A violent episode, Dad wandering off and being lost, delusion that you can not control, or illness can all make placement necessary quickly. That is what happened to us. The first facility was not a good match for Mom and Dad. The second facility which was well researched was just the right match. So don't make the mistake I made and wait until it is necessary

Hope to hear from you again soon. I have been where you are and I am four years on the other side. I understand the emotions and the difficulties. So please keep typing!!

Love, deb

 
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Old 01-02-2011, 05:47 AM   #4
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Re: New Here, has 85 yo dad living with us with stage 3 demential

HI Deb, thanks for your kind reply. Yes, dad was diagnosed several times. This last time, he was diagnosed with Stage 3 dementia. He went to a rehab facility for 2 months after a hip problem and he saw many doctors when he was there... I was warned the dementia would progress; of course his hip problem has been resolved.

Yes, he is being seen by his internist of many years; he has much experience with the elderly, but true, he isn't a geriatric specialist. Will look into that.

He takes the minimal pills at night, coumadin, high bp meds, aricept and now the ativan. Truthfully, it really seems as if a dose of benedryl works the best, even though I have read that I shouldn't do that!

I am realizing he will eventually have to be admitted to a facility. We love the facility he was at for his rehab. It is close to home, recommended by his MD; and I did visit the long-term portion of the facility while he was there... I suppose I am hesitating because of the cost... we hate to see his money dwindle away.. he had planned to send my grandson to college and I now know that when/if his cash is all used, the home will come after us for any cash given away in the last 3 years...so sad, but you are correct, I will continue to research the envitable.


Opps, gotta go, he is waking up... annamarie

 
Old 01-02-2011, 06:00 AM   #5
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Re: New Here, has 85 yo dad living with us with stage 3 demential

Thanks for that post Deb! I know it wasn't really for me but it was just what I needed to hear at this moment! My in-laws move into care on Jan 10th & we are having a job dealing with it at the moment- even though we realize it will be the best thing for them really. We will go interstate on the 6th & help with the move, & stay there for 10 days till they settle a bit.

Anna Marie I wish you well! It's not an easy path I know. The ladies here are wonderful though & you will find plenty of support!
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Old 01-02-2011, 08:33 AM   #6
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Re: New Here, has 85 yo dad living with us with stage 3 demential

Bubble, the decision is a difficult one and you tend to second guess yourself. I did!! You know in your rational logical mind that it is the best solution but you wish that it didn't have to be still drags on your heart. Not to mention the logistics are daunting! Just know you will get through it and it does get better. Once she is settled you can breath a sigh of relief I went to bed and slept for 10 hours!! Good luck with the move and know that you can do this!

Love, deb

 
Old 01-20-2011, 09:28 AM   #7
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Re: New Here, has 85 yo dad living with us with stage 3 demential

My 94 year old dad was living with my brother and his family and the situation was really bad. We agonized for months. My brother's health was declining because he would stay up all night listening for my father's nocturnal roaming around the house and in order to make room for dad my teenaged nephew had to share a room with his brother who is autistic and was keeping him up all night as well. My thoughts were from the beginning that we could not sacrifice the well being of the children. The decision had to be made and we put dad into a nuring home in August. To our surprise my father loved it. He convinced himself he was the boss of the nursing home and everyone reported to him. The staff loved him because apparently he was a great boss . It was the best decision for my father and for our family. Good luck with your decision.

 
Old 01-20-2011, 12:40 PM   #8
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Re: New Here, has 85 yo dad living with us with stage 3 demential

Annamarie, the diagnosis is actually the easy step... doing what needs to be done afterward involves some hard decisions. I was not surprised when you said Aricept and Ativan... it is what they prescribe when they don't know what else to do. I consider them both bandaids. They don't solve anything. Aricept, at best, will slow the progression for a short period of time. Do you really want your FIL stuck in this angst for longer than necessary? The Aricept itself can cause anxiety as well. The Ativan is just a short acting anti anxiety medication, which is addictive, that puts them on a roller coaster of emotional ups and downs and does not address the root problems.

What I suggested is not another diagnosis but an psychiatric evaluation by somebody that is well versed in geriatric psychiatry with a specialty in dementia patients. That is when I found relief for my Mom. The unit she was in only serves geriatric dementia patient. The psychiatrist in charge of the unit had many years of dealing with dementia patient behavior and knew what he was doing. What a blessing he was for me in my understanding and for Mom. I give him full credit for Mom's current emotional stability... and with that stability came a relative stabilization of her decline. In my honest opinion, I believe the anxiety they experience does more to cause the decline than anything else. She went from functional to where she is now in two years... and the last two years since the trip to the Geriatric Behavioral Med unit... she has been relatively stable compared to the previous two years. Her Psychiatric cocktail has done more than the Aricept plus Namenda.

These are just my experiences for your consideration I know how bad the situation can get because I have been there. We each have to search out our own answers... and we have to remember that each person involved is important.... not just the loved one with dementia. Some end up with physical illness because of the stress and exhaustion from care giving. Children are deprived of their childhoods. Families fall apart under the stress. We have to look at everybody involved and not just the loved one with the disease.

As far as the cost... what is the cost to the family by keeping him at home? Some cost are not measure in dollar signs. There are other ways for his grandson to go to college. My daughter is there right now with grants, some loans, and a work study program. Mom's money is being used for her care. I don't know if it will take it all or not... but if it does so be it.

Bubble, my post are for anybody that will receive a measure of comfort from them I know the physical move and all the ramifications of them settling in can be overwhelming... I have done it two now Just know that once they are settle in the right facility with the right medical intervention it will be better for everybody involved!

Blackiesgirl We were worried about Dad's adjustment to the facility and thought Mom would be ok... Surprise!!!! Dad settled right in and became the social butterfly and it was Mom that fought us tooth and toe nail. Validates my firm believe that there is no need to worry... because what you worry about probably won't happen and life will throw you that curve ball you never expected instead. I am so glad your Dad is the boss of them all and enjoying his time there!!

Love, deb

 
Old 01-26-2011, 05:05 PM   #9
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Re: New Here, has 85 yo dad living with us with stage 3 demential

Quote:
Originally Posted by amhaden View Post
Hi All, I have been trying to read the messages on this board, it is all so overwhelming to me... My 85 yo dad moved in with us 3 years ago, he was in good shape then. He has very slowly gone downhill, no longer driving, has mild COPD, mild CHF, but his mind has been going in the last several months, much more so in the last 3 weeks.

I think he is starting to have sundowners.. symptoms start near bedtime (7PM), he starts talking wierd, then it is a battle. Of course, when he is like that, I can't get him to take his night meds... so we moved the night meds to 4PM and then tonight his mind was slipping right at 4PM. When he is in this 'state'; he wont swallow those pills, he says 'it wont work' and then he opens his mouth and drools those pills all over.. very concerning to me, we have 3 small dogs.. we only do pills in a closed room away from the dogs, but I am really scared and nervous. I have been studying up on sundowners, alz and demential.. I am learning that "I" must stay in control, not yell at him, not try to reason.. it is hard... I am such a wreck.. we sometimes give him benadryl when he recovers from these attacks (anywhere from 20 min to 3 hours). Once he 'comes around' he asks for a 'sleeping pill' (either a tylenol or a benadryl) and he goes to sleep... of course "I" watch him half the night, fearful he will awake, but he doesn't...

Do patients live many, many years with this demential or do they succumb, or most likely from another illness?? I don't want to put him in a home, I am really, really trying to keep him... he has an 8 hr a day caregiver, but the issues are ALWAYS on my shift... I do work during the day.. my husband and I have given up our social life to care for him, one of us always has to stay home on the weekend, if one of us should go to the store, the bank, a haircut, etc... we hate our lives now... we are still trying to keep him out of a NH, but I don't know how long that will be... reading the other messages, my problems seem minor... at least dad know what is happening for part of the time... some of you have it much worse..

The doctor recently prescribed Ativan .5mg for him, 1st pill was given tonight, don't know if he actually swallowed it or not.. will see as the night goes on... thank you for letting me ramble... pray for me...

AnnaMarie

Golly I hate the idea of forcing meds down the throats of old people! A few years ago I had what I believe was a slight stroke, which left me a little disoriented for a few years. Because of that, they put me on an anti-anxiety medicine. That type of medicine was very painful on the joints so I didn't take much of it. All of I could think of, during that time, was of all the poor old seniors and others who were handicapped and unable to express their pain, (or didn't realize it was coming from the pills). Older people, those who sleep a lot, or those with weak kidneys and livers, can often not tolerate the powerful drugs they are given and often have no way of expressing that except on occasion by spitting them out.

He would probably be much better off being exposed to as much sunshine as possible and being taken off of those pills. All pills, while curing the body in one way, damage it in another.

 
Old 01-26-2011, 10:27 PM   #10
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Re: New Here, has 85 yo dad living with us with stage 3 demential

HBJ... there was a time when I thought the same way until I saw my Mom's hysterical anxiety. She was in true emotional pain. Is it right to let her remain in that state of emotional pain? If she had physical pain would I withhold the medication that would alleviate her pain because it might constipate her?

Yes, my Mom is on a cocktail of psychiatric medications. Her emotional pain is under control to the point that she actually smiles. She is still ambulatory, eating, and usually in good humor. I would not take those pills away from her because they are what has taken her pain away.

Yes, I know there are side effects and complications with medications. But it is a balancing act to determine the benefits vs the side effects. Taking Mom out into the sunshine did nothing for her hysterical crying, combativeness, agitation, aggression, and general feeling of distress. It is impossible to make broad generalizations that we should not give such medications to the elderly. I know what I have done for my Mom is exactly what she needed to live out the remaining days of her life in the best way possible. Each case has to be evaluated individually and each decision made on it's own merits

Love, deb

 
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Old 01-27-2011, 07:59 PM   #11
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Re: New Here, has 85 yo dad living with us with stage 3 demential

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Originally Posted by DGabriel10 View Post
HBJ... there was a time when I thought the same way until I saw my Mom's hysterical anxiety. She was in true emotional pain. Is it right to let her remain in that state of emotional pain? If she had physical pain would I withhold the medication that would alleviate her pain because it might constipate her?

Yes, my Mom is on a cocktail of psychiatric medications. Her emotional pain is under control to the point that she actually smiles. She is still ambulatory, eating, and usually in good humor. I would not take those pills away from her because they are what has taken her pain away.

Yes, I know there are side effects and complications with medications. But it is a balancing act to determine the benefits vs the side effects. Taking Mom out into the sunshine did nothing for her hysterical crying, combativeness, agitation, aggression, and general feeling of distress. It is impossible to make broad generalizations that we should not give such medications to the elderly. I know what I have done for my Mom is exactly what she needed to live out the remaining days of her life in the best way possible. Each case has to be evaluated individually and each decision made on it's own merits

Love, deb
For sure, you're right when you say each case has to be evaluated individually, deb. But what would you do if she spit the pills out? It's such a tough problem really, and I guess you have to base it on how well you know your parents. I know that if my own mother spit it out, even if she couldn't talk, that she would be definitely communicating to me that she didn't want them. (She landed on this earth as a very firey fighter and will surely go out the same). So I would have a hard time forcing her to take it.

I guess another reason I answered that way was that I recently had a friend whose husband had been operated on for cancer several times and the poor old guy was in so much pain he was screaming for hospital staff to just let him die. Just leave him alone!

He was really angry that they were constantly cutting him up. He felt as though he was being used as a guinea pig, for new experiments, much like the poor animals are.

After undergoing a cancer operation myself a couple of years ago, I often also think to myself that if it were to happen again I might also prefer to just let it take over, because nothing could be more scary to me than being in the same position as that poor old man. I thought that was the most painful operation of my entire life and would never want to go through it again. (Of course, it's pretty hard for anyone to speak until they're actually there a second time. Ya never know, the mind could change.)

These things are so tough to deal with because on one hand you want to give individuals their rights, and on the other hand, many of your decisions are based on your own experiences with pain, and with those you have known who also had pain, and everyone assumes the suffering person feels the same as they do. So at least it's good there are boards like this where people can read everyone's opinions and make a "middle of the road" decision of their own.

I also know, from having taken those drugs myself in the past after being diagnosed for anxiety (which I feel was actually caused by an undetectable stroke), that those pills hurt my joints something fierce! If I were unable to speak, or even to comprehend what the pills were doing to me, I would hate it very much if someone forced me to take them, and would hope that I too would have the ability to suggest to people I didn't want them by spitting them out.

Until I went through these things myself, I had forgotten how, long ago when I worked in a home for the mentally handicapped, I also saw many of the kids attempt to spit out their medicines, and many did appear to be quite upset about having to take them. Some moaned constantly, especially at pill time, and tried to push the little cup of water and pill away. I often felt they were pleading with staff trying to motion that they didn't want them, and couldn't communicate. With mentally handicapped people you don't know if you are dealing with geniuses who simply can't get their points out, or people who really can't think much. From one day to the next, some went from appearing to have little or no intellect, to appearing to be geniuses.

At that time though staff wouldn't have caught on. If patients were to get pills, then they were to get pills, no matter what. It was as if, after they landed in such an institution, they had no rights at all anymore. And again, it's my own endearment toward "rights" that also makes me think the way I do. Now that I'm getting older, like many of my older friends, I say the same thing: "There's nothing more scary than the thought of landing in a nursing home where I would have pills shoved down my mouth no matter how much I objected, and where I would have almost no rights at all." To me, "rights" are as much about happiness as smiles.

Just a personal viewpoint of course.

 
Old 01-27-2011, 11:28 PM   #12
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Re: New Here, has 85 yo dad living with us with stage 3 demential

Everybody is entitled to their own opinion and I appreciate reading yours but it doesn't change my point of view.

My Mom is deep into the later stages of her dementia. She spent several years in emotional pain. This is not something she can control. We did everything we could possibly do. I have watched her lay in the yard in the sunshine and scream hysterically. I have watched her pack for days and fight with her beloved husband and say thing to her daughters that she would have never said before this disease. She was miserable. She was also combative and aggressive. So after way too long, I found the help she needed and it was in the form of medication. As I have said she smiles and laughs and is good humor most of the time now... as she was before this disease.

I understand what you are saying. I respect my Mom's request and her dignity. I would never do anything that was not in her best interest. I have a MOST and a DRN form on her along with a living will. I talked to her extensively before she was stricken with disease. Her mother also had Alzheimer's and I know her thought there and what she wanted for herself. I will do nothing to extend her life. But the little lady is in excellent health. There is nothing wrong with her except the Alzheimer's. What I will do for her is make sure she lives out the remaining years of her life as pleasantly as possible. If that take medication then so be it. She can not make that decision for herself at this point. She does not have the cognition to know what is best for her. I would not leave it up to a small child to decide what they should and should not do. If a toddler has an infection and doesn't like the pink med... do you just let the infection run rampant?

I refuse to let my Mom remain in the emotional and psychological pain she was in. The gentleman that wanted to die... he didn't want to die in pain he just wanted to die. I see the two cases as similar. Mom doesn't want to live with this disease but she will live until she dies... and it is up to us to make that time as comfortable for them as possible. So I am not shoving pills down my Mom's throat... I am giving her relief from her angst so she can live out the remainder of her life as pleasantly and with as much dignity as possible!

Love, deb

 
Old 01-28-2011, 05:54 AM   #13
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Re: New Here, has 85 yo dad living with us with stage 3 demential

Oh dear! Oh I'm sorry! I hope I didn't insinuate you were shoving pills down her throat! Sorry if I conveyed that because I was thinking of my own mother when writing, versus yours. Mine is quite the opposite in nature. I think most people "know instinctively" what their parents prefer. Sounds like you had a fantastic relationship with your mother and are doing "exactly" what she wants as well as what's best for her!

But in my mother's case, I think she will one day be forced by staff to take pills, and like the man above would spit them out. That's when the decision would be hard for us. While we wouldn't hospital staff to have to deal with someone who might be hard to handle, at the same time we would feel guilty knowing she would so strongly resent that. She's no where like your mother, I'm sure, in that she has always controlled everyone around her for most of her life and would both resent and fear losing that control, and more than anything, control over what was put into her mouth.

Last edited by Jul2; 01-28-2011 at 05:59 AM. Reason: wording changes

 
Old 01-28-2011, 10:58 AM   #14
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Re: New Here, has 85 yo dad living with us with stage 3 demential

NO!! I was not insulted at all. I know what I am doing for my Mom. I just wanted to make it clear that every pill is not unnecessarily shoved down an elderly patient's throat for no reason. I also wanted to make it clear that a dementia patient does not always know what is best for them. That is what we are there for. Just by the nature of the disease they lost the ability to control their world. There is nothing we can do about that. That is why we have to make the decision as to what is best for them despite what they may do in the moment. Yes, there are some very difficult decisions to be made... but they have to be made in light of the cognitive inabilities of our loved ones. If Mom had the cognition to make decision for herself I would not be making decision for her... but that is not the case for me or for you.

It's a learning curve to get there. The most difficult part of this disease to accept is that they can not make their own decisions. We have to become the responsible adult rather than the child. That role reversal is traumatic, more so for us than for them. Yes, my Mom balked stubbornly to losing control of her world. She resented and resisted losing her driving privileges but after several incidents including a hit and run (vehicle not person) we had not choice. She stubbornly resisted and resenting losing her home of 50+ years and moving into Assisted Living but after several incidents which indicated that it was unsafe for them to stay at home even with a care giver present we had no choice. It is in making these hard decisions that they resist and resent that we make sure they are safe and well cared form In my case the need for medication was one of those. I made each decision carefully and know they were right. My only regret is that it took me longer than it should to come to the decision.

Yes, Mom has spit out pills before. One of her medications, the most important one, is actually a liquid. Do we give her a choice of whether she wants to take them... NO! Do I give her a choice if she wants to drive or not... NO! Do I give her a choice if she wants to live at home... NO! Do I respect her wishes in her living will... YES I DO! I will do nothing to prolong her life... but I will keep her as safe and happy as she can be in this disease.

I am not sure any staff wants to drug a patient. If they do then your Mom is in the wrong facility. That is the last resort but one that is always an option that has to be considered. If Mom is miserable, assaulting other residents or staff, or a danger to herself or others there is no other choice. A dementia patient in distress is NOT going to cooperate so they will not cooperate with the medication at first. That is not a conscious choice that they don't want the help. That is a natural instinct to fight or flight what every is in their way. So you have to look at the cognition level before you decide if they are making a rational choice As I said I am the first to fight for the rights and dignity of the dementia patient but I am also realistic and grounded in the disease.

I had the disease vs dignity argument with a staff member this week. They set dinner places with 2 glasses, fork, spoon, knife, dinner plate, salad bowl, soup bowl, dessert plate, and napkin. That completely and totally confuses my Mom. Give her a bowl and a spoon and she will eat all that is in the bowl. Give her a 10 piece place setting and she just moves stuff around without eating. So does setting a place as we think it should be showing respect for dignity? Or is setting her place so they she can function properly showing the respect for her dignity? I say that doing what is best for them even if it it is a bowl and eating with their fingers is respecting her dignity.

I enjoy the debate I am firm enough in my believe to consider other opinions and explain mine!

Love, deb

 
Old 01-28-2011, 05:53 PM   #15
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Re: New Here, has 85 yo dad living with us with stage 3 demential

My mom too is in the latter stages of this disease and she too has gone through the hell this disease can bring..she has lost her house because she can not live alone any longer...she has lost her husband to cancer and she has lost her car since she can't drive any longer. This all happened to her in a matter of months and that was three years ago. It about killed her...since that time she has spiraled into the rabbit hole of this disease. The fear stage, the paranoia stage, the angst ridden stage, the hysterical stage.

I fought and fought trying to find meds to help her... to bring her peace. She couldn't sleep...this disease made her life miserable and ours in the process. I am her daughter and I am her advocate. I fought for her ..it took me months but I finally found the right combination of drugs to help her. They have calmed her. She can sleep again. She smiles again. These drugs have driven the demons out and given her peace again. Does she spit them out??...yes, sometimes, especially at night..the worst time for this disease. But not because she doesn't want to be medicated (she doesn't have the capacity to make that decision any longer..it is now mine to make for her) but because she doesn't want anyone pushing anything in her direction..be it drugs or M & M's.

And when she does spit them out ..which isn't all that often...they crush the ones that can be crushed and offer them to her in applesauce.

These drugs do not "drug" her. They help her. It is a miracle. She has come from the depths of hell to a place of happiness once again.

The change has been so profound that I am instructing my doctor.. Also her doctor...to make a note in my file that if I ever get this disease he will prescribe the same combination for me.

Every case of this disease is different. Every case has to be handled separately and every one's advocate has to act the best way possible to alleviate the agony for their loved one. This is just my story....unfortunately, there are millions more out there.

Love, Meg

 
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