My mother was diagnosed a few months back, with mild to moderate Alzhiemers. She is only 68, and was always very active up until about 6 months ago. She is married, but lives in a different house than her husband (dont ask...this happened many years ago). Basically she lives alone, but get a lot of support from me, and at times my sister. Her husband also helps....minimally.
Anyway mom's diminishing driving ability was one of the things we noticed first. Of course she was getting more forgetful throughout the past year, but she would always blame "being retired" and thats why she didnt know the days of the week, times, etc...but then she got pulled over about 6 months ago. She was asked for drivers license and registration, but she couldnt disquinsh which was which (the police officer later told me), he also said that she was very confused, and didnt know why she had been stopped. He told me that another motorist had called in a possible DUI...I guess she was all over the road, and hadn't been drinking. Well we later discovered that she had bad glaucoma and that her "eye pressure" was elevated. Anyway, feeling my mother was not a safe driver, he ordered that my mother take a written, road, and eye exam. The study guide arrived, and mom was completely distraught, overwhelmed by the book, and long story short, we knew she would not be able to do this. She couldn't comprehend the guide, took the test twice and failed miserably. We had evaluated twice, and both dr's said mild to moderate alz. She thought the doctors were crazy and that she did pretty well on the exams, which she did, but based on the license thing, and paired with some other factors...that what they said. Well mom turned her license in, and has been worse than ever, memory wise, and neediness wise. She is really going down hill. She is depressed, not eating, calls me at least 7-8 times a day...forgets daily that I am working. She calls my sister, stepfather, anyone that will get her out of her house. We got her and ID from the registry and told her that this was for id only. (she thinks its a license and that she can still drive). Honestly the regression in her mental status has deteriored rapidly...ever since the license. The confinment is her big downfall.
I feel so bad for her. Over the summer me and my mom checked out some day programs, mom was about the youngest out of everyone. She went one time and refused to go again...she complained they were all old, and half dead and that she wouldnt go back. We visited some assisted living facilites, with very imdependent tiers of AL and she flat out refuses to ever leave her house. I also hired a personal assistant who mom hated, and accused of stealing and ruining her driveway with car oil. That was the end of her.
She wants us to buy her another house so that if she has to be home all the time, she will happier in a new home. I tell her that the only move she should make is one where there are people around to help. Right now our schedule for mom is I take her out all day Sunday, my sister takes her out all day Saturday....most of the time, if she is not busy with her children. She is a single mom. Her husband picks her up daily at 2:00 pm M - F, and makes dinner for her, then brings her back home (he is overwhelmed with her). The times when she is alone, she calling all of us. I dont know what to do. I have tried options...We have Power of Atty. and I pay her bills. She seems to be getting worse by the day. Her dad lived with ALZ for 15 years, and died at 85. Sorry this is one big huge paragraph....but thats how my life feels. Forgot to mention....all ALZ drugs make mom sick....I am thinking about anti depressant, and anti anxiety, but mom is also now refusing all medication since her experiences with the alz meds. She is also refusing to see another "cucoo doctor". Mom is 30% happy (when she is with me or my sister), 35% angry and 35% sad...
Im 37 yo and single...and feeling like that is not going to change, any time soon....ugh
I need help.
Last edited by moderator2; 11-13-2008 at 08:38 AM.
Reason: posted disallowed website(s)
Yes, Filenia, you DO need help. Look. Every one of us here either is currently caring for our loved ones who have dementia/alzheimers, or we have, and our loved ones are in 24 hr care. Every one us has been where you are. And believe it or not, every one of us thought we could do this job alone, or with a little family help.
And every one of us was wrong.
In the dictionary under "clueless", you will see a picture of me. No matter what dad did, no matter how completely irrational, abusive or addled he was, I had not only a reason for it, but the complete knowlege that I could take care of him till the Lord called him home. I could also take care of MY family (DH, son, daughter and waay too many animals), both of our homes, all the meals and laundry.
Then daddy took a little trip off the edge and could no longer keep his body clean. That's ok, says I. I can bathe him by hand. Then he forgot how to shave. No problem. I can do that too. He wets his pants 3 or 4 times a week now. That's fine - I can deal with that.
But you know what? I am not willing to deal with any more. I have hit the wall. I want to go to church as often as I want to. I want to go for a bike ride with my kids. I want to take a painting class with my daughter. I want to join the rest of the family in activities. I want to take a trip with my DH.
And I want, above all, for my dad to be safe. I am looking into placement at this point. I will burn up the phone wires till I find a place, too.
Because, my new friend, there comes a point when they are no longer safe. Ask mom a queston the social worker asked my dad yesterday..."If you walked into the kitchen and saw fire coming out of an outlet, what would you do?" I was so surprised to find out that my dad had no idea what to do. Can't dial a phone, and did not know to get out of the house. That was one of the 50 final straws.
Start looking, Filenia. Her time is coming, and soon. It's not fun to hear, but it's the God's Honest Truth. This is too big a job for one person. Or two. Or three. Really, it is.
Come on back, and post often. It helps. And believe me...you can't shock us. We have talked about poop, pee, sex, money, doctors, our own marriages, kids...you name it, it's safe here. So hurry back. And know that we are on your side.
Welcome Filnea... I hate you need to be here but you have found the right place. Your story is the story of so many here. This is the best group of caregivers and little deb is right... we have seen and talked about it all. Sometimes at great length with long post. Venting is good and know that we ALL understand.
I know exactly where you are. I was there a little over a year ago... times two. My Dad has had vascular dementia for about 8 years. Mom cared for him until her ALZ got so bad it was impossible. She overdosed him with Xanax that lead to a 5 day hospital stay... she told everybody he had a heart attack.
We tried it all. We split up weekends (none of us lived close by) and somebody was there from Friday night to Sunday night. One of Mom's nieces stayed on Tuesday night. We hired a care giver during the day. Mom and Dad were only alone three nights a week at most and you would not believe how much chaos would occur on those three nights. Some I shudder to think about now. We had suggested that Mom find placement for Dad and she refused. We suggested a day center and she refused. We hired the caregiver and Mom ran her off. Mom refused to leave her home. She had promised Dad he would never go to one of those places. Mom would call us repeatedly with things that "Dad had done".... when in fact much of it she was doing. She was slipping fast despite the Aricept and Namenda. She felt confined to the house because of Dad and yes, she suffered from depression, anxiety, and anger.
Finally.... Mom decided she didn't need us, she didn't need the caregiver, she was fine, and if we would just leave her alone everything would be ok. Then she went back for her yearly check up at the Memory Assessment Research Center. She had been restricted to driving in their small town for a year but the recommendation was that she give up driving totally. Our angel caregiver not only cooked, cleaned, made sure they had their meds, took them to appointments, but was now taking them where ever they needed to go. Mom, in a fit of rage hit the caregiver, and that was the end of that. Mom became hysterical laying in the yard yelling and crying and refusing help...... God bless the friend that came over and slipped her a Xanax in a piece of candy. A week later they were in AL.
Mom had a harder adjustment than Dad did but 14 months later they are both much happier than they were at home. At first Mom explained to me that all those people were old and couldn't remember anything. She wanted to go home. She was miserable at home and felt if she had a vacation she would be fine. Then in AL she felt if she was home she would be fine. Not knowing that the problem was in her head she thought that moving locations would fix it all. Now that she has adjusted she is enjoying the socialization she gets. Actually they both do. She and Dad go on trips, there is always something going on in the lobby or rec area, and they eat at a big table with six other people that have become their friends. They have their own furniture in their little apartment and it is gradually becoming home to them. Dad has not been back home. Most of the time he loves it where he is. We have taken Mom back a few times but the last time I took her back she didn't even ask to go to the house. It is slowly slipping into the past.
I had a hard time making the decision to move them because it was not what they thought they wanted. We had tried everything else and nothing worked. That last day..... we just did it. We found a place, took Mom and Dad there, told them that is where they were moving, and moved them in.
We do have Mom on antidepressants and both Mom and Dad are on anti anxiety meds. That has helped with the emotional roller coaster. They are well fed and gaining weight instead of losing it. They get their medications as they should. And most of all.... they are happy.
I can tell you from experience it is dangerous to leave your Mom at home alone. Disaster can occur at any moment.... and we had many. Somebody needs to be with her. At some point somebody will have to make the decision for her..... because she will NOT do it. Take it from one that has been there.... it only gets worse. You do need help... more than you probably realize. No it's is not going to get better any time soon. Again I will say it will get worse. Moving her to a new house with further confuse her because she will lose the familiarity of the home she is in now. She needs one move only.... to a care facility. My only regret is that we didn't do it sooner.
Again, welcome to the board. I do understand your frustration and hope you keep posting. This place has been my sanity and hopefully it will be helpful to you as well. I will keep your family in my thoughts and prayers...
What I did with my mom, was after she lost her driving privileges, and was forced to retire due to memory loss...I kept her upbeat and happy...
My Mom went through a peroid of adjusting, but now she is as happy as a calm, on Aricept, has a licensed companion who she goes out with frequently, and she is pretty content, still living independently.
The hard part is between finding help, helping her adjust.
Thank you all for your responses and support. I called my mother today and told her that I was going to work and I got, "you work?". Poor thing. My sister and I, well mostly I, am strongly considering just getting the AL residence and keeping her current home. I think buying her some new furniture in her AL facility, might make her happy, and every now and again, she could come home or maybe transition to AL? I don's know. Mom claims that she is not very social, but she is. I think in the longrun, she would find it much more comfortable and eventually get to like it there. We visited one place and she loved it, until she got home and it sunk in that she might be moving...then she told me I am not going to any "f in" AL. Alrighty then.....
THanks again, I am here to stay.
Good bless us all.
Welcome, I lost my mother a year ago to this horrid disease, and my daddy 5 weeks earlier to an anuerism. He also had vascular dementia-but he as nowhere near as bad as momma was. So I lost both of my folks in a 5 week span. I have been there, done that, got that damn shirt and it sucks.
You can't move your mom back and forth and let her play at being in one place and the other. You can ask Deb about that. Move your MOm into the asissted living space, get her new furniture to keep her happy and tell her it is for her health and your health. End of story. You can't mover her back and forth. IT won't work. She will just get confused and frustrated and angrier than she is and that isn't good for you or her or anyone involved.
If you don't have durable POA and medical POA get them both now. get on all of the banck account also. You wll need these soon enough. All of these will only make your life easier and hers as she slips down the hill. The medical will allow you to talk to the doctors without her around. well needed these days.
It has taken us a long time to get through our struggle. Listen to what we can offer you. Little Deb is finally coming to her senses..she realises that she cannot take care of her dad alone. Don't make the same mistake she has made. For the sake of your mother's health and safety, move her into assisted living so she can be safe and well cared for.
Come often and post often. We are willing to listen and offer advice..sometimes it's painful to hear, but we are always here with shoulders to cry on...you are in our prayers..
Filenia, buying her new is not going to clear the fog that lives in her head. Actually new is more confusing then the old. The problem is that they do not have the cognitive ability to know it is them that is the problem therefore they blame everything else. Mom yelled at me more than once that she was not going to live in any f.. AL. Guess where she is now The house is in tact except for the furniture they took with them but they are never going back.
If/when your Mom moves to AL you need to expect a period of adjustment. Like your Mom, my mom thought the place was great when she visited. Then she was resistent when she realized that is where they were going to live. When she realized that she didn't have a choice she told everybody that they were moving because of Dad. Shortly after they moved in Mom went into revolt and almost drove us crazy. She wanted to go HOME! She threw "Major Southern Hissy Fits" and tantrums that a 3 year old couldn't achieve. They didn't impress me much because those are the same hissy fits and tantrums she was having at home. It was not the place but the fog in her head that was driving her crazy. We did have to adjust her medication but now, for the most part, she is happy.
Don't put much stock in the excuses. They are the creation of a mind that is misfiring. Mom would tell us she was a prisoner and needed to get out then turn right around and tell us she was not social and didn't need the facility activities or people. Neither were true.... she had lost the ability to socialize with new people. She had lost the ability to adjust to anything new. Her unhappiness was not because of where she was but because of the fog of confusion that she could not wipe out of her hear.
It is up to us to make the right decisions for them. When I was struggling, in the same place you are, a wise caregiver here on the board told me... You will move your Mom when YOU are ready. At the time I thought it was all about Mom being ready but later I realized it was past time for Mom and Dad to move into AL by the time I got ready to do what I needed to do.
I'm glad you are here to say. Drag up a glass of wine, have a towel, and keep typing. We are all here for each other in this ugly journey!
Maybe your Mom needs to be in a nursing home. This sounds harsh and I know she doesn't want to and will refuse. That's where my family got confused in Mom's case ... we said, " but she refuses!"
It took a few years before we finally understood, at least 2 out of 3 siblings did, that Mom's opinion must be discounted. What she wants is no longer relevant. We had to do what was best for her because she was not capable of knowing what that was.
It is sad that your Mom has this terrible disease, but from the level of her confusion, she is already well along the way. I don't know if her doctor has her on any anti Alzheimer drugs. They may help in the early stages. So far nothing is on the market that helps later, and even those early AD drugs don't reverse anything, just possibly slow it down.
Since my Mom did finally spend her last 2 years in a nursing home, I can assure you that people of all ages are there, not just old people. Younger people with disabilities, who cannot manage witout round the clock help, live there. Older people in various levels of Dementia live there. Some are only physcially handicapped, many who break a hip and cannot learn to walk again.
The advantage is having a fresh shift of nurses and aides on duty every 8 hours, not one around the clock harassed and frazzled daughter (me) trying to be superwoman all day every day while alsol holding down a job. Mom also refused to have Home Health Aides in the apartment, but by then she had no choice. We paid them, and we instructed them to stay even if she tried to throw them out. Otherwise, she could have burnt the house down or worse. If they have some expereince with dementia patients they are able to change the subject, offer ice cream or a walk to the park when the going gets rough, and ease the patient into a more docile relationship. But Mom was always suspicious and 'hated' the aides, until 8 months later she wound up in a NH anyhow, because of breaking her hip. There, at last she accepted the caring of nurses and aides, including being fed and washed by them when necessary. It seems it was her home she was defending so valiently, not her person.
It is a sad trip you are embarked on, but I wish you luck, and do try to remember that placing her where she can get the best of care is done for HER, not for you.
Mom's opinion must be discounted. What she wants is no longer relevant. We had to do what was best for her because she was not capable of knowing what that was.
Welcome Filenia (what a beautiful name!)
Martha has put into writing the exact thing that is SO difficult for each of us to do! I know...I know...we feel like we are "going against what our loved ones have repeatedly stated"...but, you'll soon find out you have absolutely no other choice. I'm so sorry for the journey you have found yourself stumbling thru...this is a bumpy path...but, let us hold your hand and clear the way a little for you.
I read everything I could when my own Mom was diagnosed more than 10 yrs. ago...she is in the last stage now. My MIL passed this past Dec.from this horrendous disease...and FIL has been in a medical facility (also Alzheimer's) for almost 4 years.
One thing that really stuck in my head was that Alzheimer's was first discovered in a 52 yr. old woman in the early 1900's!! Scary!! It is not too unusual for symptoms to appear in a person in their 60's...Scarier!!
We were told there are more than 60 recognized types of "dementia"...Alzheimer's is only one. (I often think I must have 3 or 4!) I teach at a vocational school for high-schoolers...this year, we have a very high amount (80%) of "special needs" students...I have found that what I have learned to help THEIR challenges has surely helped in my understanding and acceptance of what Alzheimer's is capable of.......and watching the deterioration of my loved ones has given me a whole new outlook when working with "my kids"!
Such an interesting thing the brain is! MIL had very quick deterioration...FIL has become a mean confused old fella...and my own Mom seems to have developed a coy, sweet, comical personality that makes everyone love her! (in the first few years, anyway...now she just sits with no expression or communication) Mom hasn't recognized me for several years...but once in a great while will pick her head up and look at me with a beautiful smile...somehow seeming to know I'm there...at least that's what I want to believe!
In the beginning, after Mom's placement, I wanted to bring her home with me for a long weekend...so we could place flowers at all the cemetaries like we'd done each year. It was awful when she was up wandering during the night...and when she woke us, seemed painfully aware of the changes going on in her head. When she repeatedly asked questions I answered as honestly as I could...the realization in her eyes and her actions was heart-wrenching..........she threw her head back and wailed like I'd never seen before. I ended up getting her back in bed and laying beside her with arms wrapped around her to settle her down. The caretakers had warned me that ANY change in location could be extremly unsettling for an Alzheimer's patient, but I thought, since I knew her best, nothing would happen. She almost seemed happy when I took her back...she had already become familiar with people and surroundings.
This has been a looooooong journey...so many things posters bring up, some of us have already been thru and found solutions for....but this is a disease that delights in the deception and chaos it causes....learn all you can about it, because it can be so different in its' pattern and time schedule.
Sure didn't mean this to get so long.......hope it helps! Post often; many will benefit from questions asked, answers and suggestions given...but most of all the realization you will have that you are NOT in this alone.......Pam
I'm on the outside looking in. I'm concerned for a caregiver who is taking wonderful care of our mother, daddy passed in '95. Anyway, it is not easy on the person who is there.
First off, early on -- Mother was doing forgetful things. My parents built a house in PA thinking of their wonderful retirement years. But then we always saw a problem as they visited back and forth. It started off where Mom seemed confused for a few hours as to where her things were in NJ and Daddy said it was the same way when they went back to PA. Then the confusion was for a full day - then more than a day, etc. After Dad died in '95, we had to bring Mom back to NJ and she was able to function longer because she was working off her long-term memory. But my kids started saying "Mommy, Grandman made a left-turn on a red light". and then people started calling to say "hey saw your Mom drive the wrong way down a one-way street". When she had a hit-and-run and sister told me the police sent a letter asking her to come down with proof of insurance, I took her license and keys away. I'm the bad seed anyway so what the heck!, better me than sister.
over time, I'd be stopped by concerned neighbors asking me what is happening Mom is telling everyone that sister is refusing to take her to a doctor and she's not feeling well!. I stated not to hold much cotton to what Mother is saying and just checked wth Sister who said "I just took her!".
Leaving them alone even for a short time -- my mother flooded the kitchen twice into the basement and dining room doing a simple task while sister took a nap early on in the illness. Apparently a plastic lid she washed when over the drainhold and Mother walked away leaving water running thinking she finished washing up.
When my kids were in school and would come home before we did from work, I'd ask them to just go over and say hello and see what Grandma was doing and periodically run in and out under different reasons. One day, got call from Son that he walked in and smelled something. There she was in the kitchen, with a pot on the stove, and she's at the counter with her back to it. The only big problem was -- there was nothing in the pot!
Now we've all done things like some of this stuff and kick ourselves for stupidity. Normally it was when we took on everything and tried to do it all! and it had nothing to do with a disability but if we make simple mistakes like keys in refrigerator and butter in our hands trying to start the car (lol) doesn't that make you wonder what is happening in their minds. What I'm trying to say Filamena, is just understand you are at the beginning of a walk towards darkness of a life you once knew with your Mom. Its a walk none of us chose or would love to choose.
You are going to have to be the parent now and your Mother will be the child. You realize that you as a parent make tough decisions to keep the child safe from harm or to 'raise them right and do right'. They'll take temper tantums and say 'no' alot. You have to ignore this and keep on doing what is right. Discuss with sister immediately and get your POA's, you will happy you did.
Keep writing here, you are not alone -- none of us is -- here.