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Old 10-31-2008, 10:22 PM   #1
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Question Need advise PLEASE HELP!!!!!!

Hi Everyone,

I don't post her often but read quite often.

OK here goes...... I have been taking care of my mom for the last 3 years with out a break and I know it's taking it's toll on me.
I have noticed a cognative decline in the last 3 weeks. It started one morning whe I just happened to walk past the breakfast table and noticed she was eating cereal with water and when I asked her why she didn't put milk on her cereal she said I don't know I didn't think you had any milk. There is always milk in my house. Another day my husband walked into the kitchen and she was just sitting at the table so my husband asked her what she was doing and she said nothing so he told her she neede to eat breakfast. I have always sat her bowl, spoon, cereal and meds on the table for her and she has always taken the milk out of the fridge but now befor I leave I sit the milk on the table and so far she has been putting it back in the fridge. The other things she is or is not doing: she has always been very clean and lately she can't find the "thing" for her teeth, does not remember to eat lunch if I dont remind her and them becomes very confused about how to fix her lunch, also I have always made her get her own drink dor dinner and now she gets so confussed she can't find the glasses.
SHe goes to Aduld Day Care 4 days a week and now I have one day to worry myself sick about what is going on at home while I am at work. I am able to check on her at lunch time.
I am reaching the end of my rope and am not sure what to do or how to go about it.
Any assistance you wise ladies can give would be greatly appriciated.

God Bless All
Ann
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God Bless us all. We need it!!!!!

Ann

 
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Old 10-31-2008, 11:14 PM   #2
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Re: Need advise PLEASE HELP!!!!!!

Ann... welcome to the board. You definitely came to the right place.

It is obvious that your Mom can no longer stay at home alone. I was where you are now and I can tell you that there is no telling what she might attempt to do. You are right to be concerned. You can not depend on her to feed herself properly. Beyond that what if she puts a pot on the stove and forgets it or lays a dish rag on the stove and walks out? If there was a fire would she know what to do? Is she actually taking her meds? Just because they are gone doesn't mean she is taking them. Mom threw away pills because she didn't know what they were for. The possibilities go on.......

For your sanity and your Mom's safety it is time for you to get some additional help. You might want to get someone that can stay with her when you can not be there... and even some time when you are so you can have a break. Or you might want to consider a nice assisted living arrangement.

We moved Mom and Dad to AL a 13 months ago after it became evident that they could not stay at home alone.... and Mom refused to cooperate with the sitter. I resisted the AL idea for over a year but now I realize that it was the best for Mom and Dad. We have had a few rough spots but for the most part Mom and Dad both enjoy the socialization and activities of the AL that they didn't get at home. I am sure they are well fed (both have gained weight), they get all medications when they are supposed to have them, there is a nurse on duty at all times, there is a doctor on premisis three days a week, and when Mom acts out or Dad falls there is a staff member there almost immediately. Beyond that I know they are well cared for and safe. My only regret is that we didn't move the sooner.

Leaving her at home alone is the last option you want to consider. She is at the point that she needs somebody with her 24/7..... you just have to decide how you are going to do that.

I hate you need to be here but again.... Welcome!!! I am sure some of the other ladies with throw in their ideas as well.

Love, deb

 
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Old 11-01-2008, 09:27 AM   #3
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Re: Need advise PLEASE HELP!!!!!!

Thanks Deb!!!!! I truely believe in my heart she does need 24/7 care but, like you, I am having a hard time with it. I know if I don't do something she may out live me. The stress has taken it' toll on me.
Again Deb thanks!!!!!!!

Ann
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Old 11-01-2008, 09:59 AM   #4
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Re: Need advise PLEASE HELP!!!!!!

Dear Ann,

I have heard this before -- that the caregiver dies before the Dementia patient.

That kind of 24/7 care is deadly. I did it - for 5 years - and it took a toll on my health.

When my mother broke her hip and had to go to a nursing home, first for rehab and then because she needed around the clock care, she turned out to be happy there. And it was a new life for me. Remember, the nurses and aides come in on 8 hour shifts. They are rested and well prepared, they know the routines, they have done it all before. On top of that they were always lovng and caring, Mom felt like (and decided she was ) a guest at a spa!

Yes, she deteriorated slowly, and died last Christmas ..at age 99 - but without the care of the NH it may have been sooner, and I may have gone with her. No one, superwoman included, can take the strain of being responsible all of the time.

Love,

Martha

 
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Old 11-01-2008, 12:21 PM   #5
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Re: Need advise PLEASE HELP!!!!!!

Unfortunately...there's so much we do not understand about this horrendous disease.

Three persons very close to me have Alzheimer's. My own Mom is in the 10th year...MIL passed this past Christmas, and FIL is in the 4th year. All were placed in different facilities...and that alone has helped me survive!

The progression has been entirely different with each one...and even obvious in the other "clients" where they now reside. Alzheimer's is very individual in how it affects each person. In the beginning of this journey with Mom, I read everything I could about this disease.

One thing that I remember is that "familial" (hereditary) Alzheimer's usually progresses more quickly than if this disease is caused by a very hard head injury. (This scares ME...I've had 2 hard bumps in the last 3 years...ARGH!) Also, any change in the persons surroundings or health, (even a cold!) can cause this disease to accelorate!

Research, research, research! Knowing what we can about this journey surely doesn't make it any easier...but at least helps us understand.

Each of us who post here understands your worry about "taking it's toll on YOU!"...... Be careful my friend, it has surely taken it's toll on my health, family, marriage, and outlook.................Pam

 
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Old 11-01-2008, 08:59 PM   #6
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Re: Need advise PLEASE HELP!!!!!!

Hi Ann!

Welcome to the boards!

I am right where you are. But 3 years ago, I gave up my lucrative and fun career to take full time care of my father. He is 82, and a solid stage 6 dementia patient.

He also has done some weird stuff. Today, I found the empty, carefully washed juice pitcher - in the bathroom waste basket. His clean clothes are often shoved in any available receptacle, today he spent 2 hours sweeping (with a broom) the lawn. He can figure out how to put milk on his cereal, but only if I put the milk on the table. Any meals are prepared by me, served by me, and I sit there while he eats so he doesn't feed it to the stupid fat dog. He has cognitive ability, but very precious little. He does not know my name or relationship to him, but he knows I am familiar. He can speak 3 or 4 words at a time, but no more than that. He falls 3 or 4 times a week, and pees his pants at least 3 times a week. Refuses to wear depends.

What I am saying is that this job is sooooo hard. I know it is. And even if you were to decide that you could afford to quit your job and stay home with mom, and hear me clearly here, IT IS NOT SMART. I have an appt with dad's doctor on Monday to figure out the next step. I don't want this job to kill me, as I still have a 12 yr old to raise, and my husband would be helpless without me. Not really, but I like to think so.

I also understand the "I don't want to put mom in a home because it would upset her" thinking. I am SOOOO there. I don't want daddy to be scared, worried, lonely, hungry, angry or feel warehoused. But I also don't want to precede him to meet my Maker. We will find out where this leads on dad's front.

But Ann, (Deb Gabriel - be proud of me here), it's time to start the thinking process of "what to do about mom". The first time she sets fire to something in the microwave, the first time you come home and can't find her, the first time she is disoriented and confused for a period of time, then you will be under the gun to find a placement. Start looking now. If she progresses at the speed daddy has, you may have very little time.

I wish you peace, Ann. Please think of HER best interests now, just like you have been for the last 3 years. I have not been fair to daddy to keep him at home for the last 4 years. He needed placement at least a year ago.

Come on back, and post often. Here's another towel (deb tosses Ann a towel), and I will help hold the other end. Keep us informed...

...lil' deb

 
Old 11-02-2008, 05:30 PM   #7
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Re: Need advise PLEASE HELP!!!!!!

My mom came home from rehab approx. 1 month ago after breaking her hip and things are going really well (knock on wood). The one thing I want to let everyone know is that she was there for 2 months and doesn't remember a thing about it. I truly believe that we could put her back there and she wouldn't really know the difference. Only "we" know the difference. Currently she is at home and it is working out, but when or if the time comes when she needs to return to rehab or a NH....I think the transition would be ok because in my heart I know she wouldn't know the difference and it would be best for the family. HOpe this is making some sense to someone out there. :-)

 
Old 11-02-2008, 05:51 PM   #8
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Re: Need advise PLEASE HELP!!!!!!

Quote:
Originally Posted by brokenhearted2 View Post
Only "we" know the difference.

This is the key phrase each of us need to say over and over to ourselves. Remembering this will help get you thru the tough times...they still won't be easy...but realizing this truth is a huge step!

What you're saying does make sense to those of us who've been dealing with Alzheimer's for a while...please know there are many shoulders and listening ears.

I find it interesting how many of our loved ones end up with broken hips! I guess I don't mean "end up"...I'm referring to this being the noticable start of family realizing obvious changes. My own Mom was already showing a few signs that my siblings and I ignored...then was struck by a hit-and-run driver early one autumn morning...and left by the side of the road while she was getting her morning paper. Her hip was shattered...after surgery and a 2 month stay at a nursing home to heal...she never returned home. She was transferred to an Alzheimer's facility. She was very aware of what was happening and it was he[[ dealing with her!! I think that's what is the most difficult...the guilt and "double-crossing" we each feel when we finally do what we KNOW has to be done.

I have referred before to a movie about Alzheimer's that is really good..."Away from her"...starring Julie Christy. Please see it if you get a chance.

I'm way over the guilt feelings now...but spent many a drive home in tears. Please know I'm walking beside you in this ordeal..............Pam

 
Old 11-02-2008, 06:47 PM   #9
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Re: Need advise PLEASE HELP!!!!!!

Dear all who read this:
Unfortunately you will probably be either a sibiling who doesn't see it or the actual caregiver who excuses everything away. In either case, making the decisions that are tough to make, is all about being the adult.

it's hard but true. The parent becomes the child and the child becomes the parent. The way you interact to keep a child safe is the same way with the parent with Alzheimer or Dementia.

You must understand that as the quasi-parent, you must make tough decisions. I had a daughter who was having trouble since birth til about 3 years of age. We had to have her go through tests such as tubes down her nose, etc. While we would've prefer to take the pain for her, we had to hold her down and help deal with it.

Now its your turn or that with your siblings of making the tough 'parent' decisions regarding the 'child' in the family that you call Mom or Dad.

My prayers are with you.

 
Old 11-02-2008, 06:51 PM   #10
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Re: Need advise PLEASE HELP!!!!!!

The femural fracture (broken hip) is a major hazard in old age -- and statistics say it shortens life expectancy. Death often occurs within one year of the fall.

My Mom fell and broke that hip bone in Sept 2005, had an operation, had physical therapy in a rehab center but never achieved the ability to walk again.

The deterioration in her mind was scary. When I first saw her after the operation she had lost her hand coordination to the point that she could not wipe her nose, her hand with the tissue in it waved around somewhere inches away from her nose. She could not push her glasses back up when they slipped down her nose. The operation itself, with general anesthetic, had started that deterioration; and the pain meds after the operation made it even worse. I thought she would not live another day .. but somehow she did bounce back from the effects of the operation.

Guilt was a massive factor in myself and my brother. The accident happened at his house and he blamed himself. It happened after I had allowed him to take over her care so I could move away and resume my own life after 5 years of caring for her at her apartment. I felt guilty too - if I hadn't moved away, if we were still living there, would she have fallen? Could I have prevented it?

Giuilt feelings did nothing for anyone, nothing positive. Later a good friend told me that many of these falls/hip breaks happen in reverse order - the bone spontaneously breaks and THEN the person falls down. If that's what it was, nothing either of us could have done would have prevented it.

Mom outlived the odds and stayed in that rehab/nursing home for 2 years and 3 months before passing away from the effects of not being able to swallow, process food, or react to medications , all of which are 'normal' in the progress of dementia.

Prevention of bone fractures is an important part of keeping loved ones safe. No throw rugs, door sills that can be tripped over, steps, etc -- nursing homes are designed with no steps, no thresholds, no throw rugs, no chair legs that stick slightly outwards - a major tripping hazard - and nothing left on the floor, no laundry baskets, cats or dogs (I trip regularly over my daughter's cat, he loves to get under my feet especially on the stairs!) - nothing to cause falls. A cane or a walker can prevent a fall in anyone not quite steady on their feet.

Sad how often these fractures mess up the last part of a person's life. Drink a lot of milk, take calcium tablets, keep your bones strong!

Love,

Martha

Last edited by Martha H; 11-02-2008 at 06:58 PM.

 
Old 11-02-2008, 08:16 PM   #11
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Re: Need advise PLEASE HELP!!!!!!

Hi All,

Thank you for your responses. You are all full of wisdom. It does help to know there are others going thru the same thing (unfortuntaley).
There are some other things I have been noticing about mom. Quite often she looses her balance a litttle and constantly in and out of the bathroom. I took her to the doctor and she did have a UTI but her toliting has not changed. I have talked to the day care and they told me when she is there she may go 2-3 times a day. Believe me when I say she is in and out of the bathroom she will go thru a 12 pack of scotts toilet tissue in a little over a week and she is at daycare 4 days a week from 8am to 3pm! The only thing I can think is when she is home she is either bored or has forgotten she already went. Has anyone else expierenced this with their loved one?

Lil Deb thanks for the towel!!!!
What night is Wine night???

Again Ladies you are all very wise and helpful!

God Bless us all

Love,
Ann
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Old 11-03-2008, 06:00 AM   #12
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Re: Need advise PLEASE HELP!!!!!!

My sister told me that my mother is going constantly but she blames the water pill the doctor prescribed because of mother's high blood pressure.

The funny thing is that my sister said that she finds she goes more as well -- I said that 'yes, you'll find as you age, you'll go more because on a woman everything starts to drop'

My sister refuses to put a diaper on mom but does concede to the liner pads in the panty.

What my sister is dealing with is not being able to sleep because my mother doesn't sleep. She tells me that it may be the 'booster' pill for the Aricept that she gives her twice a day -- in the morning and at night. She feels the 'night' one doesn't let Mom's brain relax. I've seen statements about something called "Twilight . . ." and was wondering how others deal with it.

My mother doesn't go downstairs or such at night but she'll wake my sister up constantly for different things such as bathroom trips, etc. I asked my sister to call the doctor and see if there's a sleeping pill or even permission to give Tylenol or Advil PM or even 1/2 Benedril, anything that will get my mother to sleep and allow my sister to get even a little rest.

Besides hiring someone to sit up all night what do others do? Is it the 'booster' pill that keeps my mother up?

 
Old 11-03-2008, 06:10 PM   #13
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Re: Need advise PLEASE HELP!!!!!!

Mom and Dad both take namenda and aricept and it doesn't seem to effect their sleep pattern. Dad sleep longer and longer (13 hours a day now) and naps often when he is up but we know this is because of all his circulatory problem (PAD, heart, vascular dementia). Mom on the other hand has never slept as long as Dad. It is the hours when Dad is sleeping that Mom broods. Both have their schedule but I have seen no significant change because of the aricept.

As for the bathroom issues.... I have not had any experience with excessive going to the toilet. We have more problem with being sure Mom and Dad are sufficiently hydrated. They forget to drink and therefore go less often. If they do not go in the first few hours I am there I push liquids. The med techs are also giving them more than the little cup of water with the meds. They make sure they drink a sufficient amount with each med and with each meal. This has truly helped.

Dad has a PRN sleep aid for night he does decide to wander. Mom has a PRN antianxiety med for those brooding days. Perhaps your doctor can recommend something that will be helpful... if you are insistent enough. At least temporarily it might be a good idea to get a night sitter so that your sister can get some quality sleep. Nobody can do it all, all day, all the time, without it affecting their health.

Love, deb

 
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