Hello everyone I pop on this board every now & then, as I have a loved one who has Alzheimers. She has been progressing rapidly & it is hard to watch. I am also one of her primary caregivers & very much involved in her care.
I have been researching Tumeric/Curcumin & has read some postive things on this spice/herb supplement involving Alzheimers & dementia. I have started my loved on on this & if anything hoping it will help with her arthritis which its also been used for.
Has anyone tried or heard of this?
She is on namenda twice aday & aricept to. Which the pharmacist said is pretty high doses. It breaks my heart to see her so confused sometimes more so after taking her meds. We have taken her off one dose of the namenda with her doctors approval to see if it makes a difference. I am also going to try to get her in to a specailist who strictly deals with alzheimers. for now she is seeing a neurolgist & I was not pleased with this doctors lack of pateince at the last visit or her willingness to take the time to discuss the families concerns. I think we have nothing to loose at this time but seeking another opinion of treatments.
She has broke acouple bones & on the mend but we have to limit her & she is a very active women, although we give her plenty to do she is insistant on doing the things she cant do for safety reasons right now, such as the stairs.
I am beginning to see a more angry side of her & her husband if worried sick.
I am in the process of safety proofing the house for his peace of mind, such as ways to prevent her from getting out of the house without his knowledge..
We have a bed alarm which has been a god send, but of course she strongly dislikes it.
I have went on & on here, I guess in part to vent.
Any other alternitives anyone has tried & seen progress with please share.
god bless you all, Sammy
Sorry to find you over here..but it is a caring group of folks you have run into. The anger is a common side effect of the disease and also of the medications. You might read up on the drugs that she is on and see if one of them aren't causing the extra anger that you are seeing.
Having read your concerns about her doctor, I would look for another geriatric specialist with interests in the dementias. You need to find someone who is well versed in the latest drugs and treatments to get the best possible care for her now. Ask the Alzheimer Assoc. for a list of doctors if you don't have another one in mind.
Namenda and Aricept are the two major drugs used to slow down the progression of the disease. They won't stop the disease nor can they alter the course of it. They can only slow down the progression. They are used in the early stages of it. Once the patient gets too far down the path, it really isn't worth giving the drug any more. Some people don't seem to react too well to the combination of the two either.
If she tries to escape from the house, try putting a latch hook up high on the door to keep her in or one of the plastic knobs that fit over the round door knobs that they use for toddlers. you have to squeeze buttons to get the door to open.
I know you will get alot of suggestions from the other regulars...we are a fairly vocal group of suffers here! LOL...and always ready to help...welcome!
Glad you decided to post Sammy. This is a great group and we are all with you on your journey.
I do agree with you finding a new doctor. Many do not have the patience or the experience to deal with dementia and the loved ones that care enough to ask tons of questions. Dad's primary physician was wonderful and very willing to listen and research, but very up front with me about how little they are taught in med school about dementia. That is left for the specialist. With the rise of this disease now I hope that changes. Mom's doctor was clueless. Their current geriatric specialist is wonderful. So if you are not pleased the physician now.... find a second opinion or a new doctor.
Mom and Dad are both on Namenda and Aricept. I'm not sure if either is doing Dad any good because he has Vascular Dementia but he tolerates it well. Mom on the other hand has ALZ. She is more confused... late afternoon and evening. I have wondered if one of the dementia medications she is taking might be part of the reason but then there is called Sundowning which is very common. There is not medical explination for sundowning but most dementia patients are worse around sundown. Many times that coincides with afternoon or evening meds so it is easy to confuse sundowning with med side effect. Lowering the dosage will tell you which it is. Isn't it amazing that confusion is a side effect for a med to slow the progression of dementia?
I can empathize with the broken bones. Mom was walking down the street and fell and broke her arm. That is her story and she is sticking to it. We are not sure what happened except she did break her arm. Each medical emergency takes them down a notch or two and many times they don't come back to the level they were before. So part of the change you are seeing may be because of the broken bones.
Dementia patients don't like anything that restricts what they want to do. They are determined. They also don't understand that they can't do what they want to do. They are sure YOU are crazy. Child latches on the cabinets and child protectors on the door knobs are useful. Light or lasar burgler alarms to warn you when she reaches a certain area also work. The bed alarm is a great idea. Bed rails and child gates don't work because they climb right over them increasing the fall risk. Throw rugs can be a problem as well. Beyond the obvious trip risk.... many dementia patients have a perception problem when the floor color changes. They see holes or step downs that can cause a problem. Less is better. The less clutter, the less to navigate around, the less to confuse them. Keep it simple.
I do not know anything specific about Tumeric/Curcumin. There have been a lot of claims about "Natural Cures" with herbs and vitamines and other natural substances. When Mom first realized she was having coginitive difficulties she took a laundry list of these miracle cures. She is now in AL obcessing about a metal rod stuck between her teeth that the dentist can't find. I truly believe if there was a miracle cure of ALZ, as prevelent as this disease is, that you would not have to search deep into the internet to find it. Be cautious of "research" to sell you something.
As far as venting.... go for it. I have done my fair share lately. It's good for the soul and helps us cope with all we have to deal with. There is not a better group anywhere because we know exactly what you are feeling. We have been there with you..... So keep posting
Thank you, so nice to hear from someone familier. It saddens me so to see this progress to such a stage & cant seem to win, if we dont give her the meds we have one set of problems & another if we do give them to her.
She does seem to be getting agitated, she is one of the sweetest people you could ever meet but I can see the change & I swear just over the past couple weeks.
Her poor husband is really getting it. She does not want help anyomre but both requires it. Her husband would never be able to take care of his diabetes or handle her. She is getting to the point she is telling the cargivers to go home. I am going to type her up a note to remind her of why people are there & to try to give her some kind of power in her own life through the letter. I will have her husband remind her to read it when she gets upset. It is worth a try. I could just cry over what is happening to her before my eyes. What a sad, sad thing.
Her husband is extremely nervous & upset over the change & I try to comfort him the best I can. I do remind her when she blames him or anyone for things that are not our doing & hope even for abit she will remember. She can't use stairs & is starting to insist. If she breaks anymore bones she will have to go into a home & they do not have coverage for that. Her only son lives out of state now & it is my responsability to watch out for them. I have to choose wisely who can work with them as they are so trusting & already running into problems there. I have 4 of us that take care of them & one of the ladies I have coming in her husband is concerned lets her have her way which is making it hard on the rest of us. He feels she may be kind of maniplilating some what. I am trying to look for additional help & replace the one. Let me tell you good, honest help is hard to find & they cant afford an agency but pay pretty decent. Both require care & its hard to find someone who can handle the two of them.
I pray for something good to happen & am definantly looking for a specialist.
The family is interested finding out safe alternative teatments but on meds that can be hard to do. Tumeric is the only one I have come across that her doctor said is safe to try. Hopefully I get some feed back, God bless every single one of you here. Sammy
Cumin and turmeric have been recommended because they are widely used as spices in India, and there is little Dementia in India. However, the correlation might be that people in India take care of the sick family member without going to a doctor, hospital or nursing home, so the statistics are incorrect. I have heard that there is an equal % of people all over the world who get AD. It is not cultural or food related, but something goes wrong in the brain.
That being said, the key to surviving AD caregiving is NOT to explain, NOT write those little notes or remind her husband to keep telling her this or that. She cannot benefit in any way from being given hints and tips or reminders. She doesn't understand what is happening to her, she is afraid, worried and has the feeling that the whole world has gone mad.
I learned this through long and hard experience, being my Mom's live in caregiver for 5 years. I talked myself pink and green trying to explain things, remind her, urge her, direct her, redirect, criticize, ad infinitum. Result - she felt uncomfortable in her own home, she thought I was too demanding and too pushy. I loved her with all my heart and she was my lifelong role model, but I ''didn't get it'' until shortly before we moved her to a nursing home. Acceptance is the key. Hear what she says, and agree with it. She just spoke to a person who died 15 years ago? Say, wow, how is she feeling? I'm so glad she got in touch.
She sends the caregivers home? THEY have to have firm instructions to remain with her until you or someone else arrives to relieve them, they must not leave. She won't remember -- she may continue to 'throw them out' every day, but they must not leave. They have to learn to change the subject. Oh, shall we go out for a while, that would be nice, let's walk around the block. Or change the subject with food -- I am leaving in a little while, but your daughter told me to give you some ice cream before I go. By the time the ice cream is eaten she will have forgotten she tried to send her home.
And so forth. It is like lealrning a new language. Only - whatever you learn works today, may not work tomorrow.
A NH was our salvation and Mom was unexpectedly happy there.
I understand your frustrations Sammy and Martha gave you some excellent advice that I can only echo. My mom was the most kind caring selfless lady. She has morphed into a very self centered tyrant that is almost impossible to get along with at times. She frustrates and angers my dad even through his own dementia. He on the other hand is still the sweet heart. You have to remember.... it is the disease in their brains that is talking to you in those ugly tones. They are doing the best they can in the reality they are forced to live in. Their world has gone crazy and they do not have the cognitive ability to realize it is in their heads and not the world around them.
I agree with Martha. There is not advantage of trying to drag your friend back into our world. She is not on Planet ALZ and they do things differently there. She can not come back here so you and her husband need to learn how to go to her. Validation will go a long way to apease her. A little truth warping will divert aggitation. Diversion will sometimes give her time to forget. Mom has been obcessing about a tooth for over a week now. If you confront her and tell her there is nothing wrong with her tooth she will throw a southern hissy fit. But if you act like you never heard the story before, let her give you the details, and then tell her you know how annoying it will be and will have it check out she's fine. She has already been to the dentist and an oral sugeon for panaramic x-rays and nothing was found. If we drag it out long enough she will go on to something else. My daughter just told me that Mom started her "I don't have any friends here" routine while she was there. My daughter just got Mom's scrap book and started thumbing through it. Mom almost instantly started talking about her past. So don't agrue with her.... that's the first rule. Divert her and validate her but don't try to bring her back into our world.
As for the stairs. It might be as simple as hanging a curtain, even a sheet, if there is a way, to cover the stair entrance. Many times what is not in the sight is not in the mind and it might just eliminate her need to go up what she sees.
Yes, good help is hard to find. We had an angel working for Mom and Dad and Mom ran her off. My sweet docile nonviolet Mom resorted to using her as a punching bag. I also remember the lady that worked for my Grandmother who also had ALZ. Nannie fired her daily. She would do just as Martha said... leave her with a piece of cake and walk out the back door. Nannie would see her in the yard and go out to find out why she was not in the house. A good caregiver will have techniques for dealing with these behaviors. Martha is right..... they are never to leave until a replacement or you are called and arrive.
You might want to contact your local ALZ Association. Perhaps they have a list of certified caregivers you could work from. They could also give you guidance on how to place her when the time comes. The social worker at the hospital or local facility as well as the county or state social services would be good bets. There are concessions for married couples. Her husband would not have to give up the house and only have of the assets beyond that would be considered. The rules for LTC are different than Medicade, so check it out before you say no. Better to do this before you absolutely need it. As I said before..... AL was our salvation!!