That's the doctor that I saw in the video. I thought it was odd that you don't hear of coconut oil as a possible helpful thing in Alz but then thought maybe it was holistic and not profitable for drug companies and therefore kept quiet. Thanks, Deb.
When you let go of a hurt, YOU are the one set free! - Rick Warren
Lee, I am a skeptic of something that comes from one person and is connected with a profitable venture. There is not treatment or cure for Alzheimer's at this time. That hopelessness makes people vulnerable to buy now buttons even if it is based on the testimonial of one single person that stands to profit from what they are saying. But in this case there is some research. It effectiveness was not strong enough to carry it to phase III testing so it is classified as medical food in the Axona form with no evidence that it works.
I watched Mom take (and forget to take) everything they were touting at the time. I watched her get her hopes up only to be dashed over and over again. Until they know what causes Alzheimer's (and the are still not sure) they will not know how to treat or cure it. Just yesterday I read research that suggested it was similar to an infection!!! That is way off from what they had previously thought. Every week they come up with a new possible cause which precedes any treatment or cure. Coconut oil is based in the old believe that insulin problems were the root cause... old science that has been passed over
PS... anything that has a significant effect on Alzheimer's is going to be gold to those that come up with it. Even a definite improvement of conditions would be worth a fortune! So I am sure there are those that are looking into any possibilities
drag it does sound like your mom needs more than someone coming in 3 or 4 days a week, try to enter her world and see if from her side. not knowing what to wear, not knowing what to eat if she should eat, not knowing to lock the door, not knowing if she needs a doctor, not being able to use the phone, probably not the tv either, being alone in a place that is unfamilar, even though she has been there a long time they will get lost in their own home looking for someplace that is only in their mind. Familar things will become strange to her, faces she has know all her life will become strangers. The use of everyday things will cause her confusion and distress. She may not cook but does she make coffee or tea??? she may go back intime and try to cook and leave the burner on as she wonders in the home and forgets it is on. I know it is scary, but I do think it is time for something more than day people coming in. It never seems the right time to move our loved ones somewhere else, but that somewhere else has the right tools and programs and doctors to help your mom become more at ease with herself and then you too can become more at ease. the first step is really the hardest, and that is to reconize that she may need a more control enviorment.In my case my mom broke her hip and it was then I realized that she would need a care home. Waiting like I did for some sign that it was time, meant that it was time. Our journey on this long road is coming to an end. My mom is now in pallitive care, she never made it to the care home.
Actually, I don't think she gets out too much, other than when the caregiver is there. Again, having a caregiver come to her home, even when it becomes 7 days a week, is still significantly less expensive than assisted living. I would hate to spend all her money in the course of two or three years and then have to have her moved to some dive because she no longer has money. I would rather she spend as much time as she can in her own home until she doesn't remember it is her home. My heart and my mind are at war with each other and right now my heart is winning. I just hope that something awful doesn't happen like the things that you mentioned. There is more to this situation because I have a sibling whom I don't speak with, as neither of us trust each other. Not only is all of this scary in terms of what I can expect with my mother as time goes by, but I also now worry that this terrible disease is in my future too. I feel so alone in this, other than taking with my friends and with people on this board. I am grateful for that.
Drag, I can see your point. My FIL who has severe Alzheimer's moved after he forgot his own house when he was back home. We waited longer than we should have. The home care expenses were too much (4 caregivers taking shfts) and he could no longer be alone 24/7. Yes he started the home care from part-time to full-time and in the end it is 24/7.
You really would not have any choice when you have to send your Mom to a locked care home for memory impaired. You will know when she makes lots of trouble and the caregivers would not know what to do or even if they do, the expenses are a lot. Salaries and etc.
I understand that people want to be at home as much as possible. My FIL was home when the house was so bad in poor conditions needing repairs but we could not do that because he was home. Now he has moved to the NH for 17 months and we finally repaired the house last year (empty house) and it will be sold on March 1!!
It has been a long path. You will see. Do what you feel is right. When the time comes, you will know. A good home needs a waiting list. We waited 9 months for his current good home. Plan for it and you will not be sorry.
My aunt wanted to stay home. But the truth is it was not the best place for her. Her last year at home was very stressful for her. Up until my aunt's recent setback she was thriving in the nursing home, especially from the interaction with so many different people - the social element. Tried as we might, we could never replicate anything like that at home and she ended up so isolated that we ended up feeling bad she was there at home for so long.
And yes, there comes a point at which suddenly it becomes very difficult with caretakers and acting up; she was starting to get to that point where they would quit, walk out and she would be left alone, etc. Once that starts happening you can burn through money very fast.
I fully agree that a good, recognized place usually has a waiting list. Do your research as soon as you can to identify or at least rate the places that are feasible. That way, when the need arises and a spot opens up, you are ready to act.
Somebody here punched me the say way when I thought I had it all under control with somebody with Mom and Dad 7 days a week from 8 to 5 and one of the daughters there on weekends. I also had a niece that spent one night a week with them. That left them at home alone Sunday, Monday, Wednesday, and Thursday nights. There is no way to tell you all that they got into for those 16 hours a day 4 days a week when they should have been sleeping half that time. I also found out that it is not just 7 days a week. It is 7 days a week for 24 hours a days that they need supervisions. Believe me, that is more expensive than assisted living!! Listen to what the neighbors are saying and multiply that many times because they are only seeing a little bit of what is really going on. Yes, I fooled myself for a while into thinking that things were fine because that is what I wanted to believe. I hind sight it was NOT ok at all. When I take all that did happen and put it in perspective on a time line I realized it was constantly something. If she will go out with a light jacket at 20 degrees is she really ok? If she doesn't sleep at night is she really ok rambling around on her own at night? She may not remember how to put on her bra but she is capable of showering, dressing, and taking care of her other needs alone?
As for the stove, please have the gas turned out! With gas you have pilot light issues. If that goes out she may not realize she has turned on a burner and nothing happened! She can turn on the stove with a rag on the stoves. Mom burned up a lot of stuff, including pots, on her stoves after she didn't cook any more.
Since she does not drive and no longer takes the bus or train what type of socialization is she getting? Isolation is NOT good for someone with dementia. That itself can lead to a decline in their cognition. They need socialization and specialized stimulation to keep them as cognitively aware as possible. Sitting and staring at the TV or pattering around by themselves is not a good thing.
As long as she is home that is her home. She will know it from her past memory. Long after she is incapable of taking care of herself she will be home. Yet sometimes she will sit in her home and want to go home. They when you ask if she wants to leave her home she will say no. When you move her out she will want to go back home. Yet when you take her back she will not know her home. They you realize that Home is her childhood home. Later Home (as with Dad) meant he was ready to go to his heavenly home. Home takes on a very different meaning with dementia in the mid to later stages. It is not a place. It is a state of mind. Home is a safe place where they feel secure... it may be their home, their childhood home, their heavenly home, or anywhere but where they are. They want to go back to a state of mind where they are clear and the world makes sense. We know that this is in their mind and we can't take them away from the dementia. Mom has begged to go home when she was at home. She wanted to go home when she was in AL. I took her home and she wanted to go back home. Even in the late stage of her Alzheimer's with her ability to communicate almost completely gone, the one thing she can say is... "I want to go home!".
I had sisters that did not agree with much of what I did. Yet I could not sit by and do nothing for fear of what a sister might think. I was told it was not time to have Mom diagnosed but I did it anyway. The severity of her dementia even surprised me! It was past time for diagnosis. There was dissension about moving Mom and Dad out of the house. It was not time. They needed to stay there as long as possible. AL was expensive. I heard it all. But Mom finally had that last melt down. It was obvious to me that she was incapable of being at home. Then I made the ultimate move and brought them here. I was actually accused of kidnapping my parents It's not easy and the other may be angry with you but right now it's not about them at all... it's about MOM!!! In most cases somebody has to step up and be the bad guy. They have to put down their foot and be assertive or everybody just sits around until some catastrophe happens.
As for worrying about my having this disease in the future. I don't worry. What happens will happen whether I worry or not so why waste my time worrying Most of Dad's male siblings died at 57 of cardiovascular events and Dad's first heart attack was at age 57. I am my Dad's clone but I am 60 and so far I have no heart problems Mom had breast cancer when she was about my age. I have my mammograms (will have one the end of the month) but I don't worry. Dad had vascular dementia and Mom has Alzheimer's. Will I survive my other genetics to get that far? As my daughter said... "By virtue of being human we are all dying!" Nobody gets out of this life alive!! We will all die of something at some time in the future. The possibilities are way to varied for me to worry about the how and when. I plan to live my life to the fullest until it is done
When is the next time you go see your Mom? Is there anybody there that you trust, will go check in on Mom, and you can talk to about your Mom? Do you get frequent updates from the care giver that is with your Mom as to her behavior? Have you talked to her doctor? Has your Mom been officially diagnosed and do you know how extensive her cognitive impairment is?
I totally relate to this post and agree with all that was posted!!!
We thought with aides and this and that all was "OK" with my aunt but then I installed a granny cam and I saw what was really going on an - and all I can say is that I was stunned - in a way it was a blessing that she fell the next week because it gave me the "grounds" to move things to the next level; without that event it would have been the fight of a lifetime I am sure.
What I learned from this is that what one SEES on a visit or gets reported by the hired help is only the tip of the iceberg with any type of dementia. Even what I see on a visit to the nursing home is only a "slice of life" and does not represent the full picture!
So true about take what the neighbors say and multiply it - by a large factor.
Even paid aides you cannot totally trust. My aunt frequently bribed her aides with cash and in return they did not fully report to me about my aunt not eating or falling.
I recommend someone who is not sure to do what I did and install a somewhat hidden granny cam. Probably not completely legal but I did not care because it provided me the information I needed to know. When you see it with your own eyes.... it all seems very different.
And not even to mention the social element. Few things are worse than isolation in this situation!!
Once I understood more I felt very guilty that I had let my auntie stay home for so long because "she wanted to be home" and "It's better for them to be home".
The bottom line - and I do not mean to be cruel or mocking - is that with any dementia, you cannot let the inmate run the asylum. And sadly that is what happens in most situations until someone takes the rein or there is a crisis. But as soon as the situation is recognized, the cognizant must seize the reins from the impaired.
Originally Posted by Gabriel
Somebody here punched me the say way when I thought I had it all under control with somebody with Mom and Dad 7 days a week from 8 to 5 and one of the daughters there on weekends.
That is true. We let my FIL ran his own life for a while (a year or so.) He messed up and lost keys and bothered the neighbors... We didn't think it was Alzheimer's although my late MIL said he had dementia before she passed away.
The harder part is my FIL would make you feel he is OK. He would tell us he was not OK with food so we could hire the caregivers and etc. But he would not tell you his mind is out of space. He would not tell us he didn't take a shower as he thought he didn't want to take it anyway. The first year we had a lousy caregiver who came with less hours. It was hard because my FIL was stingy and refused to pay more. So we ended up with his falling and the neighbor called us to force my husband to deal with it.
It is logical that one has to hire someone to be there and etc., but the elderly would say no no and we could not go against him. We were green on Alzheimer's at that time and didn't realize how we should have done it. I even got mad when he lied about his cell phone and a helper. He lied and said this temp. Polish helper was his best friend. He lied here and there and yet he was able to hate me thinking I am not nice. (Conflict with the lies and everyone got angry, you know.)
Thank God now he no longer can complain like that anymore. Yes he is sicker with severe stage but it was very hard in the beginning.
At that time in 2004, there was not enough online support groups either for dementia!
We who have been through this have come a long way!
Well said Suzy We can't let the demented mind be the controlling factor. One thing we tend to forget is that many dementia patients, especially those that are past the early stages of this disease, do not know there is anything wrong. What they perceive is their reality and they know it is ok. It is the rest of the world that has gone crazy around them... they are FINE!
After Mom was diagnosed it was suggested that she see a therapist. I just shook my head but hoped to get some guidance for the family. When I was handed computer print outs from the Alzheimer's Association Web site I knew I was in trouble. What we got was the therapist telling Mom that is she knew she was ok then she had the right to tell us to leave her alone. This lady had no idea what Alzheimer's was all about!! So Mom ran us all off!! It took about 24 hours for her to be calling us for help again. Just part of the up and down you survive.
Just know what what you are seeing is NOT all there is. Some wise person told me back then that a loved one is placed when the care giver is ready to accept the reality of the situation... the loved one with dementia is past ready for the additional help!
Hi Deb. I don't have a scheduled trip to go back and see my mother. The caregiver gives me a complete rundown each night after she leaves. The nanny cam that someone else on here mentioned might be a good idea for me to really get to see what is going on. Right now the caregiver is still only three days a week. She is available to work five days whenever I decide. I have a great childhood friend that lives a 15 minute car ride away. She periodically goes and checks on my mother (brings her to get her hair cut and checks to see that the caregiver is keeping my mother clean and engaged, food in house and house clean). My mother has never been diagnosed. Getting her to go to a doctor is nearly impossible. Besides, what would the point be? I know she has dementia or alzheimer's. She is 86 years old, so I don't think any of those Alzheimer's meds would do her any good at this point. Before logging on and reading your most recent post, I was thinking that I should look into getting a caregiver for the nighttime hours. Like from 8 pm to 8am. Someone who can be in the apartment with her to make sure she doesn't leave the apartment at night. I don't know how much that would cost, nor do I know how to go about finding a trustworthy person to do that. Last May when my mother came to California for my son's graduation, I brought her to this assisted living place near my home. It is a beautiful place where both my daughters and I used to volunteer when they were in high school. She toured the place, thinking it was an apartment, and she seemed to like it enough. She loves her wine, and they serve wine with dinner (at least in the independent living and assisted living), not sure about the memory care. They are a private facility that doesn't take medicare. Most of the amenities she wouldn't partake in, as she doesn't like games, computers, or crafts. The thought of having other people around though, is very appealing to me. Also, not having to fly to NY is VERY appealing. I would be able to see her daily, but this is not cheap. Independent and assisted living starts at $2700 per month depending on availability and size of room, and then memory care starts at $4500 depending on the floor plan. Since it can go up to as high as 6-8 thousand a month, my mother would only be able to afford 2-3 years. God knows, she can live another 13-14 years. What then, when the money runs out? The place said I could "try it out" for up to one month, because they offer respite/temporary care for people who maybe are going on vacation and need to leave their loved one under supervision. All I know is that my mother is on my mind 24/7. I am so stressed over what to do and torn when I read everything that everyone on this board posts. Perhaps I know in my mind what needs to be done, but 52 years of being her daughter has a stronger hold on me. Maybe if I knew for sure that she was worse off than I think, then it would make my choices easier. Maybe not. I was going to have the gas turned off but then how would the caregiver prepare her dinner? I guess she could microwave her food. If I put a camera up, where would I do that? By the front door? How does that work anyway, would I be able to see from California? I am not the most technologically savvy so please don't laugh at my stupidity! You are right about not worrying about the future and what is in store for me. I don't spend any measurable time dwelling on it, but it does cross my mind from time to time. Anyway, thanks for always listening to my ramblings. I don't know what I would do without everyone here.
Take a deep breath, we are here to listen to your concerns, I was wondering if you could bring your mom out for an extended visit and then while she is visiting you can observe and maybe this will ease your mine or comfirm your suspicions. I know when I first found this forum it scared the s$&@ right out of me and for quit awhile, use this forum, ask your questions , we are all here for you and know that we hear you and care about you
Dragging, I have been in your situation... you are 5 hours by plane and I was 5 hours by car. You want to think it is ok but that nagging in your mind is telling you differently. If you only knew a little more you could take action. Yet when that bit more comes you are still not sure. And yes there is that Mother Daughter relationship that you have grown up with that you have to get past. If Mom says it is so, then it is so!! I remember the first time I had to stand up to my Dad and be the responsible party! It just about buckled my knees. What I found out, even though he was angry with me in the beginning he did as I ask. He needed me. So we developed "our little thing". I started everything I ask him to do with "Dad, do you trust me!?" Then I would say... "I need you to XXX." It was not an order but something I needed and he always tried to do what I needed. There were still times he balked but I knew it was in his best interest and I had no choice but to proceed. Once you get started and get your mind set beyond that daughter obedience mentality you will be ok.
The value of a diagnosis is for you to know what you are dealing with. Is she in the early stages where she will be ok with some supervision or is she in the later stages where she needs more care. It's not about the medication they might want to push your way but for you information. You can find the MMSE (Mini Mental Status Exam) on line. It is just a series of 30 question. You can do that with your Mom yourself. It is scored 1 point for every right answer. The lower the score, the more cognition loss. You might try some of the questions with Mom on the phone to see how she does.
What reports are you getting from her caregiver and from your friend? What are they telling you? Have you considered getting a visiting nurse to asses your Mom?
I like the idea of an extended visit with you to see how she is doing. If you find out that she is not capable of living alone then you can just keep extending the stay. She may enjoy the Assisted Living. What if the money runs out... then it runs out and there is Medicaid. Just keep all her money separate from yours and keep a record of what you spend of her money. She would have to move to a different facility but in 3 years her situation will probably be very different. Too many people don't make the moves necessary because of financial concerns for the future. There are ways to work that out and what is important is the here and now. You would not want something to happen tomorrow that could be prevented because something different may happen 4 years from now. Yes it is all a guessing game and nobody has a crystal ball. Just don't put off what needs to be now because of something that may never happen.
I have never used a nanny cam but I have used skype. That would require a computer at her house with a camera set up and connected to skype. Then you could watch from your house. Perhaps somebody else would have better insight on this since I have never investigated it.
I truly do empathize with you. It is so very difficult to be so far away, not know what is going on, yet know something is not right. I will tell you that the night I moved Mom and Dad into AL was the first good night's sleep I had in a long time! It was like a weight was lifted suddenly. Yes, the decision was difficult to make and even more difficult to make happen... but it was the very best thing I have ever done
Keep typing. Keep sharing your thoughts. Keep investigating the possibilities. Keep asking question of those that are with her and see what else is available in her area that may be of benefit. Yes, facility care is expensive but it is worth it and actually less expensive than full time care at home. I keep you and your Mom in my thoughts and prayers that a solution will show itself quickly
Hey Deb. I have given a lot of thought to all that you have shared with me. In my heart of hearts, I know that you are so right about many of the issues. One thing is for sure, I am so torn. I have never in my life been one to get "depressed", but I am there now. My mother's situation consumes me 24/7. I am overwhelmed with all of it, paying her bills, making sure her taxes get done, dealing with accusations from my brother that I am after my mother's money, worrying about her situation etc., and also so depressed about the weight I have gained since I had a partial thyroidectomy in August. I have decided to increase her caregiver to 5 days a week and I have asked her to spend a night there so she can tell me whether my mother leaves her apartment during the night or if she actually does sleep. I will try and bring her out here in June to test her out in the AL place. Well, have to call it a night since tomorrow is a work day.
You hand in there. The one thing I've realize and had to learn is that when you experienced the most opposition is when you are doing the right thing. We expect support from the one's close to us but not always the case.
I don't know where your faith or belief are but is my only source when the closes to me may disapoint me. Keep your head up the rewards are always greater when going through challenges instead of going around them.
The Following User Says Thank You to mchavers1 For This Useful Post: dragging (02-20-2012)