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Old 09-29-2008, 07:24 PM   #1
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A Newbie!

Hi! I have been reading your posts for a few weeks now. My stepmother has dementia - and I believe it's in the advanced stages. She has gone downhill rather quickly. We have noticed things for about a year now - but she has many psych problems and contributed it to mostly that. At that time we wanted to move her into an assisted living home but she wouldn't move. My father has been deceased many years. She started falling and confusing her meds. We talked her into moving into the assisted living home and we hoped it would be for the better. Not so. She started declining to the point that 2 weeks ago she was admitted to the hospital because of confusion and refusing to eat or drink because God told her not to. We noticed before this that she needed extra care and we had home aides come in at night. She was walking at that time with the aid of a walker. When she went into the hospital, she declined even more. She was combative and hallucinating. She quit walking and going to the bathroom on her own. She was moved to a nursing home for rehabilitation. She has only gotten worse although is receiving excellent care. She knows us but cannot carry on a conversation. She can feed herself but cannot care for herself in any other manner. We go often to be with her - and it's heartbreaking. I'm thinking this is the beginning of the end? Sorry this was so long - but you all seem like such caring and wise people. Thanks for listening...

 
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Old 09-29-2008, 07:56 PM   #2
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Re: A Newbie!

Let me be the first (of many - you just watch!) to welcome you to our little piece of Heaven...a place where you can go to vent, get advice, compare notes and relax. Welcome to the boards, Ry!

We are all here because we live the life of a caregiver in one way or another. Some of us have our loved ones in a care home, rehab, AL, NH. Some of us care for our loved ones at home.

No matter where they are, we love them, and are watching this damned disease take them from us, little by little. Some of us are lucky enough to have folks that are still ambulatory. Some of us are lucky enough to have folks that can still feed themselves. All of us are lucky enough to be surviving the job title of "caregiver".

Never worry that your post is too long. Some of mine are volumes, seriously. Read the boards, get to know us, and write often so we will get to know you. We offer towels (for wringing, crying and screaming into and for mopping up messes <or in my dad's case, when he pees on the floor >, snowballs and rocks for throwing, depending upon how much damage you need to do, and excellent advice on which white wine is the tastiest (I agree that Toasted Head Chardonnay is exquisite!).

But most of all, we will offer you a place to just "be". We have some wise, wise people here, Ry. They will help you when no one else can.

Welcome! We're all glad you're here. Pull up a chair and sit a spell. Hope to see you soon!

...lil' deb

 
Old 09-29-2008, 08:29 PM   #3
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Re: A Newbie!

Good evening.

It is indeed a challenge to watch my Mother at soon to be 85 who raised my brother and I as a single parent and was a school bus captain, served on a county planning commission, township secretary, played bridge, worked at so many joibs typing 100 words a minute in many lawyers offices.
To date, she is in diapers, uses a wheelchair, and most of her high school buddies whom she lunched with now ignore her, claiming they are "busy".
My brother and I take her out once a week for dinner which she immensely enjoys.
We all need to do what we can to care for our parents who are incapable of caring for themselves.
As my mother's mother was in a nursing home, I am doing all I can to avoid that outcome. I would prefer her to stay here with me until she is called home to heaven.

 
Old 09-29-2008, 09:13 PM   #4
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Re: A Newbie!

Hi Ry, and welcome to the board!

I'm pretty new here, too, and have already been so blessed by many words of wisdom and encouragement. It's so good to know that there are people here who care and who REALLY understand.

I'm two weeks away from my mother in law coming to live with us. I've got a big stack of towels ready which were generously donated by my new friends here, and my rocks are appropriately stashed within easy reach no matter where I am in the house. Am I ready? Not even close, but I'm a lot further along than before I came here. I'm not sure it's really possible to be "ready," but I'm a planner, so I'll do my best to have my ducks in a row before she gets here.

I hope you'll find this board to be the haven of help it's been for so many others.

Emily

 
Old 09-29-2008, 10:29 PM   #5
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Re: A Newbie!

I also want to welcome you Ry. I wondered onto this board over a year ago. That night was was pulling out what little hair I have and frustrated beyond reason. The great people here grounded me, gave me advice that helped, and listened to my whine. Little deb is right.... this is a place you can just be. We are all at some point in our caregiver journey thought this disease and know exactly what it is all about.

We figured out that the psych problems (depression and psychotic episodes) that Mom was experiencing were a result of her dementia. By the time we were clued in she was moderate/sever. So far she is ambulatory, continent, and takes care of her own care needs. My Dad has had vascular dementia for about 8 years and she has caught up with him. At least he's a happy confused

All the moves may contribute to her confusion. It is difficult for our loved ones with dementia to adjust to new surroundings. Take them out of the familiar and they are lost. I noticed a marked decrease in Mom's abilities when she moved to AL and a worsening of her psych problem. Dad on the other hand is just happy. Each is different. You might want to do a web search on hospital psychosis and also sundowning. Both can contribute to the symptoms you are seeing.

...... and believe me, your post was not long. I am the queen of being wordy!! So drag up a chair, grab a few towels and a rock or two, and stay a while. Little deb has the wine

My grandmother was in a nursing home for over a year Snoopy. Along with many other relative on my Mom's side. Dementia is rampant in her family. Mom tried to extract a promise not to send her and Dad to a nursing home from us girls. With none of us living close to her, her resentment of in home help, and her refusing to come live with us she finally chose to move to AL. She changed her mind later but they are there, it is the best place for both of them, so that is where they will be.

You also hit on a point that bothers me. Most of Mom and Dad's friends deserted them. Mom and Dad were always helping somebody, visiting those in the facilities, or stopping by the hospital or home of those that were sick. Mom worked with Guardian Ad Lidum, social services, and red cross. Dad was a Lion and city councilman. They were both church elders, decons, and Mom was even on the national missions board. When Dad was diagnosed most of his friends, except for a couple, disappeared. Mom still had her friends but after her diagnosis they all disappeared but one. They have been in AL for a year and only had three visitors other than family. Mom cries to go home to see her two friends. The one that still came to visit and a past teacher of hers that is house bound. Even now she wants to visit those that she thinks are worse than her. I just wish those friends that they have been so good to for so long would at least come to see them occassionally...... !!!ARG!!!!

I'm glad you found us first Emily. I was a couple of years into my journey before I found these wonderful people. I did try to keep Mom and Dad at home to the point of insanity. Some wise person here told me that it is time to move them when the caregiver is ready. I truly believe that. They just convinced me I was ready Keep typing Emily and I hope it goes well when your Mom arrives.

Love, deb

 
Old 09-30-2008, 04:37 AM   #6
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Re: A Newbie!

Hello Ry,

You have found a good place. When I was a newbie in 2004 I found the most important answer to my dilemma in the first answer written -- a dear lady who no longer comes here told me my mother needs to be in a nursing home! At first I dismissed that idea .."I would never do that to her" --- but in the end it was the only, wisest, best solutiion. I was her live in caregiver for 5 years, then my brother took her in for 3 months, then she fell down a flight of stairs, broke a hip, and went frim the hospital straight to Rehab/NH where she remained until she died 2.5 years later.

I tore my hair out here, I cried, ranted, raved, filled the cyber air with pained reactions to problems with my sister, told of my plans to move to Indiana, enjoyed fabulous encouragement and support. Without this Board I think I may have done something terrible to myself, I was in such a state of depression and hopelessness.

I have one piece of good news - after the horrors of being a dementia caregiver finally end, you get a new life. Just not being in charge of the dearly loved but irrational person opens new doors to you.

You will get through it, and you will be fine at the other end.

My Mom was 99 when she passed away, and had been suffering with dementia for around 8 years, which is average.

Keep on coming back and we will all try to help as issues arise.

Love,

Martha

Last edited by Martha H; 09-30-2008 at 04:38 AM.

 
Old 09-30-2008, 07:42 AM   #7
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Smile Re: A Newbie!

Thank you ALL for the warm welcome! I will take the towels, rocks, wine - whatever you want to "throw" my way! I prefer white zinfindel if that is okay? Beringer's is my wine of choice!

We didn't want to put M in a nursing home either - but it was not our choice when she went into the hospital and had to go there for rehab. One of my siblings wanted her to go and live with him and his wife but she chose not to when she had some wits about her. Probably moving her from her home was the worst decision - maybe we should have brought in home health care - but we thought we were doing what was best for her! The assisted living place is wonderful and very homey! Heck, I could live there! Friday nights are wine and cheese night - woohoo! M would go to those and drink the wine like it was water. She never drank before. They finally had to take it away from her, ha. But she enjoyed a few months before the decline took a fast curve.

I have a stepbro who wants to take her to another city for another evaluation. It would be an hour and a half away. My other stepbro would go with him. I have no real communication with 1st stepbro - but lots with 2nd. I told him he might wnt to talk with the NH to see if she could handle that ride. And what will they do when they have to change her diaper? Plus she gets aggressive so it would be best to keep her in back seat and someone ride with her. I wish them luck!!!

I definitely have a seat pulled up - and I will ride the waves with all of you. Thank you so much!

 
Old 09-30-2008, 08:29 AM   #8
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Re: A Newbie!

Your post about the wine brought a smile to my face Ry. The AL that Mom and Dad are in also have wine and cheese socials a few afternoons a week. One of the first calls we received from the AL was about Mom and her wine. She was upset because they had "cut her off!"

I did try caregivers at home with Mom and Dad. I know my sistuation is a little unique in that I have two parents with dementia at the same time..... who absolutely refuse to be separated. They are so different that it is impossible for one person to care for them both... though the angel we had staying with them truly tried. We also had the problem of the house layout, especially the number of outside doors (4 and you couldn't see 2 at the same time). Mom stayed outside and Dad stayed inside. Dad didn't walk much and Mom was always on the move. Dad was usually happy and Mom was usually aggitated. Mom hated having in home help. I think it was partly her pride. She didn't want her friends and neighbors to know. I think it was partly her need to deny what was happening to her. In her mind, moving to AL was "for Dad" and to relieve her of some of the responsibility of caregiving. Yes, she did deteriorate one out of her familiar surroundings of home and now she wants to go back home "for Dad". Dad is always her excuse. It is never about her. She just know she will be better anywhere than where she is. The problem is..... she can't get out of her own head..... so there she stays.

In the mean time I have wrung a few towels and bounced a few rocks. But for the moment..... I always say for the moment because I never know when it will change.... it is calm on the home front

Love, deb

 
Old 09-30-2008, 05:31 PM   #9
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Re: A Newbie!

Hi Ry,
Welcome to this wonderful board......
I came across this board when I was looking for some help and advice on my grandmother who has dementia. I never expected to find such warmth and kindness from people I've never met, and since these people have become like a sanctuary for me, god bless them all!
I dont have as many experiences as the rest of these lovely people, but I do know what an awful illness this is and how much support is needed to get through it.
God bless and hope you'll post often!!!
Love, Caroline xo

 
Old 10-03-2008, 05:38 PM   #10
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Re: A Newbie!

I thank you and appreciate all of your responses. I'm not sure how you care for your parent(s) at home and I give you a standing ovation for that! This being my stepmother, I don't have total control over what happens with her - although I have been involved in her healthcare for the last ? years until about 6 months ago when her oldest son took over. I don't mind that he took over - it's actually less stressful for me. He wasn't sure of whether she was getting the right dosage of meds, correct dr appts, et cetera, so thus his taking over. She has declined rapidly and I do not believe to his fault. We all know that this disease can happen slowly or quickly. With my stepmom it was slow at first and took a rapid and furious turn. I went to see her today and she just sits in her wheelchair by the nurse's station doing nothing. She can't care for herself now and pretty much does nothing. They do have her in therapy which is getting her involved and out of bed. She knows us still - and it's hard to really talk to her. I am putting together a memory book at one of the therapist's suggestions. I will take it on Monday and she and I will work on it together. My stepbro is taking her to a larger city next Friday for a geriatric evaluation. He still thinks something can be done to reverse what is happening. He needs to do this and I can understand that. We shall see what they say. Thanks again for all of your kind words! RY

 
Old 10-03-2008, 08:03 PM   #11
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Re: A Newbie!

Dementia has more twist and turns that a corkscrew willow. Our loved ones can hold their own for a while or take a drastic turn for the worse. Then they improve a little and slide further down. It is all frustrating and confusing. Good the oldest son stepped in and took some of the stress off of you, for whatever reason. You are right that the decline probably is not of his doing. It is just how the illness progressed. It is good you are still helping your MIL as well. The more caregivers the better. The memory book is a great idea. My parents enjoy theirs...

It might be a good thing that the oldest son is taking his mother for a geriatric evaluation. That way you will have a professional diagnosis from someone that is familiar with the problems of the elderly. Knowledge is power. Understanding is comforting. I do hope he finds peace knowing he is doing all that is possible. Let us know what you find out.

Love, deb

 
Old 10-05-2008, 06:13 PM   #12
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Re: A Newbie!

Deb,
Thank you for your reply. I also agree that it is in my step-mom's best interest to see a geriatric specialist. At first I wasn's sure, but at least we will have a diagnosis. It seems to strange that I can be talking to her one minute and the next she is saying something like, "Please, follow me around my room." Or "Please, follow me around my bed." And she is in her room or in her bed at the time. Right before that she is saying my name and asking how I'm doing. I just say to her that she is in her room and I'm there with her. She seems okay with that answer. I think she feels lost since this is a new place for her - but I do try to show her things in her room that are hers. Maybe we need to bring something from home that she will recognize? I am also thankful that my stepbro has taken over because it does help. My sister and I were doing most of the care for her over the years. (Not really difficult care.) I'll let you know how her appt goes on Friday. Please keep her in your prayers. Hugs. Ry

 
Old 10-05-2008, 08:29 PM   #13
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Re: A Newbie!

Recent memory is the first thing that goes. When she is looking for her room or her bed she is looking for the one she knew before, not where she is not. Items from her old room could be helpful. When Mom and Dad moved into AL they took their furniture with them. When Dad didn't know where he was we just showed him his green leather chair and the picture of his homeplace on the wall and he decided he was home.. He would be talking to me, calling me by name, seeming connected to the moment, and then ask me if his brother (that died 25 years ago) had already had his breakfast. Sometimes it amazes me what they grasp and what they don't and how the current gets mixed with the past.. at least in the mid stages of this disease.

I agree that a diagnosis is helpful. It gives you something concrete to work with. Glad your brother has stepped up. Good for him. Hopefully this will be the beginning of a new era of cooperation....

Please do let us know the results.... and know I will keep you all in my thoughts and prayers...

Love, deb

 
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