Is anyone out there the primary care giver for someone with alzheimers or dimentia? I have a question. Thanks

My husband's aunt has dementia. We and another cousin have moved her down here into a senior retirement home, but it is becoming apparent she is going to have to go into assisted living very soon. It is so sad and at the same time so aggravating! I doubt I know enough to answer your question, but if I can I will.

I'm not the primary care giver....but my grandmother had it and I used to work in a nursing home on the floor with Alzheimer's and stroke patients. What's your question.

Post the questions and I'm sure that you will have several answers. There are very few families that have not been touched by this disease. I have taken care of several over the past 20 years in their home or mine......

What is your question? My husband and I took care of my mom for 14 1/2 years, although it was only the last 3 years of her life that she was getting progressively worse and needed 24/7 care. She died in 2005.

Go to Alzheimer's classes at local hospital! I did, it showed tit for tat what that ugly uncontrollable disease does. Patience, patience, patience. I am soooo glad I understood it was the disease that had taken over & wasn't actually my mother. We are all here to help you

I am a nurse with 15 years in geriatrics , many had dementia. I will try to answer your questions if you want me to.

Been there. Done that.

I worked in a facility for people with alzheimers and dimentia for a several years. I was involved with all of their day-to-day care, as well as seeing their interactions with their families. I'm more than willing to share my experiences if it would help you.

Thank you guys for responding. Reading your messages has helped a lot and has also made me see thngs that I knew but don't think I wanted to actually admit to myself or anyone else.

I am the primary care giver for my soon to be 97 year old Mother. Other than the dementia/alzhimer's ( depending on the dr you talk with )she is in above average health. She can still get around without any type of assistance, dress herself and do simple chores like make her bed, unload the dishwasher and fold cloths. For this, I thank God every day.

She has good days where she is aware of what is going on around her and bad days where she is very confused. Until tonight when I read one of the post, I don't think I actually wanted to admit to myself that she also has days where she is a nice person and days where she is an extremely mean person. Not the Mother that raised me.

She also has developed some very odds habbits. She no longer wants to go outside of the house even to sit on the pourch and get sunshine and fresh air. She only wants to eat sweets and cereal ( dr said at her age don't worry about it ) doesn't want to use a plate, had rather eat off a napkin, misplaces things and thinks someone took them and hoards rolls of toilet paper.

I have never been around someone with this illness. I do not know what to expect. I live in a small town about 1 hour from the city. Although help is available there, it is not easy to go into the city because Mom gets so upset if I am out of pocket. What I need to know is: Is her behavior normal for someone with dementia/alheimer's.

I also feel bad because I see her life passing by and I do not know what I can do to improve it's quality. Is there anything and do you think she knows life is passing her by?

Thank you guys for listening. I feel better already after having expressed by feeling to someone who is not directly involved in this situation.

Betty

I'm sure others will be able to help you more, but I can say that yes, she's acting normal for someone with those conditions ---if there IS a normal for it! It could get worse, with alzheimer's they can/do forget to get dressed, or have a habit of taking off their clothes (my grandmother). She can do a LOT for someone her age....be thankful for that. My grandmother couldn't dress herself or feed herself. If you want to do something to make her last years happy, then if she wants to eat straight sugar, let her. She'll die happy. She may or may not know what's happening.....The hardest part will be not getting mad at her. She can't help what she does. Yes, my grandmother went thru a mean streak. She also hid things and then would call the police and have them come to the house saying she'd been robbed. I would suggest that you DO go to town, let her get upset. YOU need to take care of yourself, too. She'll either keep getting upset or she'll get used to it.

I'm with the other that said do some research on both diseases here on the Net -- and talk to the doctors about finding you some help. The local Senior Services dept for your state might be able to help you.

Best of luck! {{{HUGS}}}

I live in a very rural area and the office of the aging is the place to go for lots of answers. There are also funds available to help with your moms care.

You need to take a break too. The office of the aging can help arrange for in home care. So many people are not aware of the funds and resources available.

Sending you hugs and you are doing a wonderful thing by taking care of your mom. It is never easy to be the adult child.

She sounds like my mom who died recently of cancer but had Alzheimers for years before the cancer. In her own mind she is perfectly "normal" because people with Alz don't think or act the way we do. I was one of my mom's caregivers along with my dad. I know first-hand how difficult it is for you. I'll make a few suggestions that I'm sure will make your life easier, but they are suggestions only. If anything doesn't work for you or if you're not comfortable with anything, just ignore the suggestion. That's really important.

First, deal with the anger (or the bad days) by visiting a doctor and perhaps putting her on meds. My mom had begun threatening me but it wasn't normal for her to do that. Once we put her on anti-depressants, she was much happier and never again mean.

Next, deal with your own emotions. You will be in a much better frame of mind to deal with the daily problems of caring for an Alz patient. You have to go through the grieving process and come to terms with what is happening to your mom and also what you life becomes. It's not easy and there are some tough decisions to be made. If you don't have help, recruit family members or prepare to have someone who can pitch in at least on occasion.

Finally, try not to worry about her life passing her by. She will be okay in her own world. It's probably one of the hardest lessons to learn--her world is safe and calm and she wants to be there. It's not your job to bring her back to your world. I know, it's crazy in a sense, but if you can accept this one thing, you'll be okay.

In my experience trying to bring the person back to our world just doesn't work and you may miss wonderful opportunities. Mom would tell me stories about when she was little--her doll, her brothers, their games, etc. She spoke as though I was there alongside her during that time. It was just so strange to have these conversations, but I went along with her, asked her questions like what's the doll's name, what game are we playing and so on. (Although mostly I just let her ramble on.) I learned more about her life during these conversations than I ever thought I would have. And it's because I didn't remind her that her brother was dead or that I wasn't alive in the 1940's when she was a child.

Of course, by this time, she was in the more advanced stages, and I had stopped telling her who was dead and who was living. I never lied, I just avoided giving an answer that would be difficult for her. I had discovered that every time we answered a question truthfully and fully, she had to deal with the emotion and grief of the answer. She couldn't remember who had passed, so she would grieve for her father who died in 1972 or whomever she happened to be asking about. This happened every time she thought of someone who had already passed. I just couldn't put her through that. Eventually she quit asking if so and so was dead and started talking to him/her as though the person were alive.

In the final stages, she didn't even speak any more. And whether it was the cancer or the Alz that made her body slowly shut down doesn't matter. She lived a full life and I miss her terribly, but I would not exchange one moment of our time together. Even when she was difficult or in her own world, she was a wonderful person.

I hope this helps you. It surely helps me to remember her and to think that my experience may help someone else who is dealing with a loved one. Most people would say Alz is a horrible disease, that it robs the patient of life, but I came to terms with my mom's battle and decided that her life was worth my change in attitude. So, I changed my attitude and instead of watching her from the outside, I tried to join her where ever she happened to be. I'm not saying it was easy or will work for you, but it certainly did work for me and my mom.

Betty, I'm a nurse but not an expert here. Sounds more like dementia than Alzheimers to me though.
I honestly don't think she is aware of her life passing by like you or I would be.
You've been given some wonderful advice by the others.
Check out help in your area and above all let her know how much you love her frequently.
We are all here for you. PM me anytime.
HUGS, Sue

Hi, I feel for you. My husband had that for 8 long,long years before he passed away in 2005. It was a sad and long good bye. I do not wish this desease on anyone or the caregiver. It is devastating to say the least. It was a blessing when the Lord took him. Hang in there. Prayers are with you.

I have worked with people suffering all types of dementia for 25 years.No two people are the same, some aspects of their disease manifests in similar ways. I have found that the earlier stages are the worst. The person is aware that there is something wrong, often this is the stage in which they require treatment for depression. I find that it is a priviledge to help Residents (I work in a nursing home), and their families deal with the day to day progression of this terrible disease. We deal with this with empathy and a lot of hugs. I am in awe of people who care for their loved ones at home. It takes a whole team 24 hours a day in a facility.Remember you must have a break at times or you will burn out. Use whatever community facilities such as repite care that is available to allow you to recharge the batteries.
Hugs to you and all that care for their loved ones. I am one lucky and priviledged RN to be working in Aged Care.

Colleen

My MIL lived with me and she too had dementia. It was hard for my children and husband because they didnt understand her like I did because I had worked in nursing homes all my life. Its a real strain on the family. Hugs to you my dear, find a way to take time for yourself so you can better take care of her.

Thanks for your questions. I am going through a similar situation with my mother. It is hard not knowing how to handle things. The advice here has been helpful for me also.
julie

My dad has dementia. I had asked the doc if it were possible for my dad to take anti depressants and if that would help the mood swings. He just gave my dad a questionaire and decided dad wasn't depressed. ugh....! The mood swings are horrible and he is not the same loving man that raised me. I'm going to bring it up to the doc again. It's a painful disease for the family.

I'm the primary care giver for my DMIL. She is in advanced stages. She can't hold a thought for a minute, ask the same questions over and over. Has trouble walking but can still get around with help! Thankfully she still has the sweetest spirit. We'll keep her at home as long as possible. It's by far the most difficult job I've ever had. May God bless for all you do.

I'm a CNA, so I'm by no means a medical expert. But in my experience, the normal thing with any kind of dementia (Alzheimer's is one kind of dementia.) is that there's no normal. That's the nature of this ugly beast. I will echo what someone else wrote that they kind of go into their own world, and it's up to us to enter their world, instead of vice versa. This can be very frustrating, and it requires LOTS of patience.

As to if your mom knows what's happening. Based on my experience, it seems that some people know "something's wrong." That's when they get agitated and start looking through papers, pacing from room to room, etc... trying to figure things out. They often will wander from their home looking for a bus to get to their childhood home or place of work. That can be very dangerous. But I've known other people who were fairly demented who I can say were perfectly happy and content in the present moment because they did not realize anything was wrong.

My heart goes out to you, Betty, and anyone else facing this difficulty.

Sorry that I got caught up in my own grief last night when responding to your questions. I hope I helped rather than depressed you even more. I also didn't mean to imply that it was fun in any way, I just hoped that you would see that I tried to make the most of the situation.

I believe that God has a plan for each of us and that in taking care of my mom, I was supposed to learn some things for my own life. I'm not sure that I learned the right things, but I know I learned lots of lessons and appreciated the time we had together. I loved her much more as a result of my caregiving.

I'll pray for you and all caregivers and please feel free to PM anytime if you think I can help you deal with the frustrations and heartache.

I was the primary care giver for my mom. I also ran a clinic for Alzheimer's patients that was housed within an 180 bed Alzheimer's facility.

It is a rough disease on all who are touched by it.

Bless you Julie. I know it's hard. I am doing the best I can but feel like I should be doing more. I have talked with the doctors and other professionals but they often talk in medical terms and provide me with the medical side of the illness and I needed more information about the day to day stuff. It was so nice to have the input from others who have been a primary care giver. God Bless you and good luck.

if she gets more odd behaviors after 3 in the afternoon that is called sundown syndrome. lots of people with dementia get "worse" as the day goes on. You must get away even for just an hour or two, it might be best for her if you do this in the mornings. feel free to PM me, if I can help I will,maybe not in person at least give advice. some nursing homes offer daycare in these situations that may be an option for you.

You are blessed for what you are doing.

As a teenager I saw my grandfather suffer from Alz. It sounds to me that your Mom has dementia and not ALZ. In Alz there is a slow regression in time in the mind of the patient. He started showing weird behavior like running away from home, playing funny tricks on us, eventually he forgot how to dress himself, go to the bathroom on his own, even walk. He dies 8 year later in fetal position.

Your Mom is going through a normal part of her life and the best you can do for her is to go along. Try to talk to her as much as possible and take advantage of the good days. Forget the bad ones. Her life is not passing by. I can understand you wishing to make her life brighter, but it is hard sometimes. Also don't forget to take care of yourself. If she gets mad because you went out, she will forget about it soon enough. Get help and take time off often. I saw my MOm take care of my grandma for 15 years and never took one day off. It was not fair to her.

Take care.

Oh ladies....all of your comments brought tears to my eyes. I was the primary caregiver to my mother, who had Alzheimers. We eventually had to put her in a home, and my Dad in another home. It turned out to be the best for both of them. I was in my early thirties, and was trying to raise two children and take care of parents in seperate facilities. I did figure out early that you DID have to try to be in whatever reality they were in at the time....it was a very hard thing, but got easier with time.
My prayers go out to you that are dealing with this terrible disease. Enjoy the good "moments" as they come.

I am going through this with my 89 year Mom. It is rough I am the only child. Pm me if you want.

My heart goes out to you. I have been a caregiver for several Alz people and when it isn't your family it is easier,
My SIL started ALZ in her 50s -- part of the effect of Lyme desease. She can still swallow but has forgotten how to feed herself. She is in a nursing home in a restricted Alz area. She has no idea who anyone is and is happy within her own little world.

Please try to get yourself some help. I know this board is here for you with love and hugs. We all have shoulders to lean on.

This is so true. Often during my days as an admin in an Alz facility I would hear friends and family trying to tell their loved one what date it "really was" etc. This only confuses them more. Just go along with them.

Your mother sounds like a normal Alzheimer's patient. I took care of my dad and had two young daughters at the same time. Just remember to take care of yourself. Your mother will be fine, but if something happens to you, it won't be good for anyone.

There was a TV show called "The Long Goodbye"about alzheimers that showed a lot of what caregivers go thru.
A neighbor's husband would take clothes off, then run down the street.He wasn't mean & would go along quietly with who ever returned him to his home. The Dr explained to his wife that no one could know why he did what he did.His mind was gone & he needed care to get him thru the last of his life. She kept him home & later on also took care of a bro with the same disease.
A friends DH is in a home,because he did get mean & she couldn't handle him.After 50 some yrs, he no longer knows her....or anyone else.
It's a sad situation for all concerned & I agree ,you need to have time off...if only for an eve or a few hrs to get away from the house.It does you good & makes you a better care giver.

Not gonna bore you w/our sit except to say Mom lives with us, 89, and been with us for 4 years. Her alz has been progressing rapidly for the past year.

What you MUST do is find respite care for yourself even if it's only for an hour. You need the mental break from the stress.

Only suggestion I have is to make sure to have the doors locked, especially at night, and a lock she can't figure out how to work. It would be terrible to have her wander off and get lost. My intention is not to scare you but just to warn you.

Hugs!

My husband went to Harbor Freight and bought a surveillance camera and a driveway monitor, and we have put them in her room. I was having to check on her every 15 minutes because she would try to get up out of bed and I was afraid she would go out the house. Those two items have kept us from going crazy ourselves. They really work. My husband put the camera on her dresser and the monitor in his study across the hall from her and he sees everything that goes on and then if he sees something wrong he goes to her. The driveway monitor is for her trying to get out of bed. We have a hospital bed with bed rails. That helps me alot because the rising of the bed. Just a thought. They really were a life saver for us. My husband is 75 and I am 62 and Mother is 89.

For caregivers who are overwhelmed and puzzled by the actions of their AD relative/friend/whatever, may I suggest reading this article:

Understanding the Dementia Experience
http://www.alzheimercambridge.on.ca/...Experience.pdf

It's a really fascinating look at what is going on inside the heads of dementia patients, and how they view the world.

It's a bit long (in .pdf format so you can download it and print it out), but not in medical-ese. It's very well written, and easily understandable.

I had numerous aha! moments when I first read it.

Hello! I found that when my mother got upset or angry, music made her settle down. The comment earlier about just going with her to wherever she is was great. The road will get really rough at times but my thoughts were that she had rough times with raising us as well.... Hang in there!

Just because someone has an MD, doesn't mean they know everything about every disease.

A freaking questionnaire to determine if someone is depressed? For an AZ patient to fill out?

You're kidding, right?

Find a new doctor. Call the local AZ chapter in your city and ask for recommendations for a Neurologist and/or a Geri-Psychiatrist, who specializes in Dementia.

There are other drugs that might help your father, including anti-psychotics. My mother is now on Zyprexa and has been for around 5 months. She's not zonked out at all, just a lot calmer, A LOT, than before. She also takes Fluoxetine (Prosac generic). She does still have her moments every now and then, but life is much more pleasant for everyone.

She was originally prescribed Symbyax, which is a combo of the Zyprexa/Prosac (well, their generics). It was crazy ridiculous expensive, so I broke it down, and now get the Zyprexa generic from Canada, and the Prosac generic here.

Bliss.

Really, the changes were almost immediate. And, yes, I've read the warnings. Which, when you dig down a bit, aren't as dire. But would you rather have your father/mother raging 20 hours a day?

I would also have your father checked for a UTI (urinary tract infection). I wasn't aware until recently that these can cause havoc in (elderly) dementia patients. They go undetected, and drs often don't check because they don't know. But the patient doesn't realize anything is wrong, or can't communicate, and there are sometimes no symptoms other than the totally erratic, aggressive, out-of-control behavior. Start with the UTI check first.

You've received some very accurate and compassionate advice. Apply what you can to your situation. Do what you can to reduce situations that cause anxiety for your mom. Some Alz/dementia patients can become extremely anxious by changes in routine. A different room, a different care giver, a different mail man, what ever.
Some regress into the fears of their life. A man may not go to bed because "it's not his" or "he can't pay this hotel bill", a fear from depression years.
Some will not keep clothes on, the next one will need the closet locked because she won't remember she is dressed and get dressed over and over again until she's overheating in so many layers.
Some will not be able to sit down, because they're in the "have to walk" phase, just keep handing them their sandwich back again after they set it down to walk. Some will regress to need a teddy bear to comfort them at bedtime.
As one lady said, don't try to bring them into your world, try to meet them in their world. That is sage advice.

Thanks for the advice! We see the doc on Monday. My dad is a vet so we go to the VA. I have to say that I have actually been impressed with this hospital and it doesn't fit the stereotype of most VAs.