need some advice on how to act posted by Ninajean @ 06:13 PM January 06, 2009

Ninajean — Tue, 06 Jan 2009 18:13:15 -0000

Thank you Mildred!

It helps when you know you aren't the only one going through these things. All the movies portray people with alzeimers as just forgeting things. They don't show the other things that come with this disease. They show the person slowly forgetting people, and quietly shutting down until their death. They don't show some of the more disturbing behavior. I work in a carehome and even I was not totally prepared for what Mom sees and says. It also makes a huge difference when it's your parent. On top of that add to the mix that we were never close. Truth be known I never felt she even liked me much, and I couldn't wait to leave which I did at 17. When my beloved Daddy died we ended up moving back to Michigan. We moved in to help with the property and animals, and here I am. Luckily I live in a reverted two car garage so we have had our own space or it would never have worked. Mom is a control freak, and all about her stuff. She has always made everyone feel they take a back seat to her stuff. She is a different personality to people she worked with. My sister and I have joked in the past about who the funeral would be for when she does pass. Our Mom or the Grandma Bet others know. I spent most of my life afraid of making her mad, or wondering what kind of mood she'd be in on a daily basis. As an adult I know she has suffered with depression. Since she always saw it as a mental issue she never got help. That in itself is sad, because having it my self I know she's suffered needlesly for so long. Once I figure out how to get her diagnosed and get some help, hopefully she would take something to help. Thanks again Mildred, I really appreciate it. Nina

need some advice on how to act posted by Mildred @ 05:33 AM January 03, 2009

Mildred — Sat, 03 Jan 2009 05:33:52 -0000

Nina, So glad you came into the site to share your feelings,thoughts,idea's,and yes,your worry,scared of what she will do next. I will tell you as some one told me. To pray a lot because God does carry us a lot. We have to guard against the damage we let happen to us as we travel this very hard and heart wrenching road. I will not tell you it is easy,you have already found that out for yourself. I read today where there are more deaths of caregivers than the loved ones we are trying to care for,so take care of yourself. We can only do so much,when it gets too hard,the body begans to give out on us,know when it is time to call in help. Do not let yourself get too run down. Yes,it is very difficult to stop this from happening,we want to care for our loved ones so badly but our own bodies only have so much it will take so know when to call in some help or else as bad as we hate to do it,let them go to the rest home. I know we all hate that thought,I said over and over"never will I put my Daddy in a rest home" Little did I know how hard it would get,their minds work beyond us. We never know what they are thinking or seeing. Yes,my Dad did not know me the last several years so he fought me,he thought I was stealing from him,he did not know me or why I was in his home. I would bring him to my home some times to show him that I had a home and did not need his. It would sink in for a while but he would forget it and still fight me. Mostly chasing me around the house,trying to throw me out the doors. Lucky for me,I could outrun him in my wheelchair. They do not walk too well as time passes so that did help me to stay ahead of him. Yes,they see things that are not there,we can't make them believe it either,at least,I couldn't. He would talk to people in the window all time. Carry on full conversations and I better not say a word to them because they were there to see him not me. I just listened and you would think it was a real person out there, Scared me at first,I thought it was someone out there. I called the ,man next door to look out for me and he assured me that no one was there. So I let him have his friends.Yes,we pray a lot,while he slept his short naps at night,I would try to lie down but had to listen for the slightest movement of him. Never knew when he would come in mad and with something to kill me in his hands. OH yes,I got rid of anything that could be used as a weapon right at the first. All knife's were put under the flooring of the house. I left out one to cut stuff up for meals but I kept it in my pocket. We are never ready for the next thing to come up out of them. Yes,I worked with the Mental Health Ass. for 20 years before I retired. I thought I had seen all there was to see but I was not prepared for Dementia or worse. Not from my loved one. Some one who was so happy,jolly and loved to have a laugh at all times. He never raised his hands to any of us girls growing up. He was so jolly and very big strong hard working man,that was my problem. He was so strong and only his mind was all that went wrong for the first few years. I thought I could handle him real easy. We would talk and share our stories of our lives,he would dig out pictures of me as a baby and tell me things that I am so thankful he shared with me. I had seen the pictures before but I looked at them again with him,it made him happy to talk about it. We would ride around,go to the lake and try to fish some. Fun things but as time slowly slipped away,so did his mind. He changed so fast some days,other days he would go back to his easy going ways. I never knew what to expect but then it turned into all time BAD TIMES. I kept him for 7 years,at his home,then I had to come home every once in a while to check on my own home. He would unplug every thing in the house,garage so I lost so many battery operated things but that was nothing compared to his behavior and how changing homes seem to change his behavior. He rested some while at my home,he actually slept some at night but the bad bowel and kidney was so hard on me. Having to bath him so many times a night,change his clothing. Change the beds so it was easier to keep him in his own home. He knew where every thing was,the beds were already ,messed up so bad. I had to spray,clean them as best I could but there is only so much you can do for them. So don't try to keep things clean and neat. It doesn't matter any way! If you live in a larger city,you may get some help from time to time. If She is on Medicare/Medcaid then you may be able to get someone to come in and help you in the home. Also,they have a day care here and you can leave her with the day care people,they are trained and take good care of the people during the day time. Ours will not keep them at night time,so if you live in a city large enough,check into it before you get too worn out and feel as if every bone,muscle,feeling in your body is shot and you are on the edge of losing yourself,call the Medicare people and ask them if your city has some one who could help you out some days,just for you to take a good hot bath,get some rest. We have to learn to care for ourselves too,or else we will be no good for them. impossible at times,that is why it is so important for you to think of yourself too. Oh yes,it hurts to see them in this shape,and we can't do one thing to change it. Before you get down too bad and feel as if you can't do it any more,get some help. I called my 2 sisters home and let them tend to him for 2 days,by the time they bathed him,chased him or else he chased them and trying to kill them all night and all day. They were ready to put my Daddy in a rest home. He did not know them either. they cried and could not believe that was our loving daddy. Hard to believe if you do not see them every day. They were against the rest home until they saw how he behaved now. They were used to seeing the happy,go lucky daddy we all loved so much. He loved us too but his mind was gone and he did not know any of us any more.We loved him so much and that is why we waited so long to put in a rest home. Yes,I went to several and looked at their reports on the walls. I also called several doctors and ask questions. Then I decided to give up trying to do what was impossible for me any more. Yes,I screamed,cried,yelled that this was not the way I wanted it to end. Without my Loving Heavenly FATHER to carry me for months,I would not have made it. yes,I even went back up to my old job at the Mental Health Ass. and got some therpy for my self to help me adjust to putting my Daddy in a rest home. We have to do it sooner or later. They do not know what they are doing,turning on the lights,turning on water and letting it run for hours. They do not know what they are doing so it is up to us to keep a close watch and we can only do it for just so long and then we have to give up the care and do what has to be done. Please,don't let it get to you,some things we cannot do,some times we have to give over to some one else and let them care for our loved ones. I would spend lots of time at the rest home,singing his favorite songs to him and he would join me but slowly but surely he stopped that too. God took him home and I was so happy for him. He was a good man,took care of his family and loved all of us so much, I had trouble understanding why God lets such good people go that way. He was such a strong,happy,jolly man. Always doing things to make us happy and enjoying life but his last years on earth was not happy for him or me. I did treasure the first few years while he was talking and telling me stories of his life and all about when my parents married and when us girls were all born,how happy they were. MY older Sister now has dementia but her kids are taking care of her. She is still sweet and so loving so far. I hope and pray that she stays that way. I have already told my girls to put me in a rest home right at the beginning if I began to act that way. I do not want them to go through it. I only wore myself out and he never knew who I was so I did all I could,as any daughter does,but there is a time to give up and put them in a rest home. So please,do not let yourself get down before you do something to help yourself. May God bless you and things go good,Remember,you cannot change their minds, the dementia and it not against you or anything you are doing for her. She has become lost in her own mind. Just love her and stop her from harming herself,which is a hard thing to do too?? So many things in the house that they can use to do damage to themselves or others,believe me,I know so well how they can find things to use to do damage to themselves as well to you. If they see you as a enemy,it could be dangerous to think about each day and what is happening. Protect yourself first. They do not know us most of the time or else they think we are someone else. Just go day by day and make sure you care for yourself too. We have to do that or else it will be us going to the rest home and sure don't want that to happen; After he went to the rest home,I slept for days and days. I had to catch up on my rest,yes,I prayed and cried,screamed from a broken heart because I felt I had failed but after some therpy I relized that I did not fail. I did all I could. So good luck and my prayers are with you all time. Write any time,this site does help all of us so much. There are special people who have gone through all that we have and understand us all. So write any time. I am here. NO,I am not a professional or a doctor,just a daughter who has been through it for a long time. God be with you and your dear Mother. Mildred

need some advice on how to act posted by Ninajean @ 01:57 AM January 03, 2009

Ninajean — Sat, 03 Jan 2009 01:57:56 -0000

Hello,

I am new to this site too. I have been looking for some sort of support and comfort. So many of the stories mirror my own in some way.

I trained as a cena to be able to better care for Mom when the time came. I worked in a care home as a cena for a while, then transfered into he kitchen. Mom has been showing the classic signs for a while, but it seemed to progress over night. She'd have occasional "catastrophic" events, now they are daily. She has hallucinations of people in the trees, hiding in the woods, dancing on the driveway, and delusions of my husband trying to sell her home, take her property, and has become afraid of him. Even my training didn't prepare me for it being "my"Mom.She hides things and then thinks someone is taking them. We have to find her purse every day. She knows us all, and deep down she knows whats happening. She worked at a mental hosp where people like her were ,put at a time before care homes , and she looks at it as a disease of shame where we think she's crazy. I try so hard not to react badly, and try to remain calm. I know I'm not suppose to tell her there are no people in the tree, but some days I just want to drag her out and say "where are they?"! Most of the time I just want to cry, and I don't think a day goes by that I don't. I am also finding my faith again, and looking for comfort for my soul. We have been chosen for a special task, and although not alwas easy, it can have many rewards. I think we all have to be prepared for the possible step of a care home, just chose very carefully. Don't always trust on looks alone.

I'm just so happy to have found this site. I have read and recognized your stories, and have smild and cried. Thank you Nina

need some advice on how to act posted by Mildred @ 02:12 AM January 02, 2009

Mildred — Fri, 02 Jan 2009 02:12:16 -0000

Hi Scott, Good to hear from you,glad things are going the way of a normal dementia case usually does. I wish with all my heart that I had the strength to take care of him forever but God did not give me that much energy or strength. I lasted for 7 years,but after he did not know me any more,he would try to do great harm to me. I was lucky enough to out run him,from room to room,around and around we would go. Until he would forget what he was doing,he would get tired and forget the reason he was after me. Bless his heart,he did not know me most of the time and thought I was someone in the house to steal all his money,furniture,anything that he could think of and he was trying to get me out of the home. If he had caught me,he would have beat me to death and I knew it. My DAD was a very strong big man. I was in a wheelchair from Polio and had been for years. That is the only way I outran him. The chair was faster than what he could run. I finally realized that I couldn't do it any more,he was getting the way your Mother is doing but I couldn't handle him any more. I called all my family in and I told them "I had to have some rest,I left the care of him to them for 2 days,they were up night and day,doing all the things I had been doing for years. When I came out of the last place he would look for me,I was rested but all of them were give out so they decided to put him in a rest home. I did not argue with them. That was the purpose of me calling them all home. They had to see it with their own eyes. When they called,they couldn't believe that our dear loving Daddy could act that way with me. That is why I had them see it for themselves. He was fine the first 5 years,I could talk to him,or we would sit on the porch and talk for hours about our life and what we wanted to do and he told me stories of my parents life before I was born and after,all the places they lived,how things went in their lives and I enjoyed it so much. I treasure all those wonderful talks. Glad I wrote as much as I could remember into a book. He lasted 5 years in the rest home. I would sit and talk or sing songs to him and he would sing with me for a while but the last few years,he quit doing anything. I was so thankful when God called him home. I prayed so much and cried my heart out at night while he was asleep. I knew it would not be long enough for me to get any rest. I had to grab a nap as I could. I did learn to listen to the slightest sound so I could get up in my chair before he got to the bedroom,just in case I had to get to rolling as fast as I could push that chair. Never knew which DAddy would come in the door. So yes,I screamed,I cried,I begged him to look into my face and remember me. He was a very loving,gental man,happy,jolly and the idea Daddy to all of us. It was such a shock when he turned mean and angry at me and anyone else in the house. Too strong for me to hold out against so I knew I had to out run him. Thanks to the wheelchair,I did it all the time after he turned so mean and did not know who I was,where we were? So he tried to hurt me. Only God took care of me and him. I still pray that anyone who takes care of a loved one is blessed with a gentle loving one to care for. My prayers are with you and your Mother. May you have it easy and life goes good. I still enjoy reading the stories that my Dad told me during those days of good times. I know it was not him that was the one chasing me every day,night. He did not know who he was much less who I was by then?? Prayers are with you always. My rough days are over. He is at peace now. Praise GOD.

Now my Sister has dementia but she is so sweet and kind but her family is taking care of her. I visit her and she still knows me but we do not know for how long? I visit her often but I do not stay long,brings back too many memories that still hurt but I love her dearly and will continue to visit her and let her know I care about her. Mildred.

need some advice on how to act posted by Ciao @ 04:48 PM January 01, 2009

Ciao — Thu, 01 Jan 2009 16:48:50 -0000

Hello Mildred, I am Scott. I am the sole caregiver of my Mother. When her dementia became too great for her to safely continue living by herself I asked her to please move into my home. That was two years ago, her needs have greatly increased since then. I have learned to LISTEN to her ask me the same questions and tell me the same things over and over and over and NOT to become angry with her. I'm still learning, I still lack patience, I still occationally become angry. My Mom has difficulty swallowing her food at times, just as she now has difficulty swallowing her medicines (pills) This is something that will gradually happen to all people with dementia/ Alzheimer's. You KNOW you are doing the best job possible, please try to do whatever helps you handle the constant stress. Maybe praying will help, maybe it's deep breathing exercises, maybe it's talking with other caregivers, maybe it's finding a private soundproof area and screaming your guts out---whatever helps, DO IT. Love, Scott

need some advice on how to act posted by Anonymous @ 03:46 PM January 01, 2009

Anonymous — Thu, 01 Jan 2009 15:46:53 -0000

Hi,

I had the same experience with my spouse. He had dementia for about 2 years. During the last 2 months before he passed away I observed he often spit out his food. My remedy was to give him a lot of liquid with soft food but to no avail. I had him checked with the doctor and nothing was wrong (no sore throat, no swelling from any cause was observed).

This is the worst scenario and I hope no one finds it inappropriate. He stopped eating and didn't care much for food. When I checked him into the hospital, it was observed that somehow he didn't have the ability to swallow any more. His bodily secretion didn't go down to his stomach and as a result of that he suffered aspiration pneumonia (the secretion got into his lung, causing him unable to breathe and bacterial infection in the lung). He died after 20 days in the hospital.

I applaud those who have to take care of their beloved who have dementia for many years. I had only 2 years. I know the pain and hardship we have to go through. It is painful to watch our beloved lose his/her memory, reducing down to like a baby, losing all basic biological functions. I know we didn't mind the hardships of taking care of our beloved but it is very hard. We have to sacrifice everything for them (our job, our hobbies to do every thing we love). Everyday we have to make sure that they are well-fed, they are clean, they are safe, there are no problems with the neighbors etc., there are enough money and insurance for their medication and hospital bills).

Despite all that, we do it religiously without thinking of taking care of ourselves. Try to have support from other members of the family. If you don't get it, it is OK don't get distressed!! Try to do the best you can, consult physicians and some support groups for your mental sanity and physical strength.

I heard some had to endure for more than 12 years and more to take care of their loved ones. My heart went out for them and I'm applauding you for having done that.

need some advice on how to act posted by Mildred @ 07:41 PM November 22, 2008

Mildred — Sat, 22 Nov 2008 19:41:13 -0000

Andi, Thank you so much for the nice words,made my day so much brighter. I hope your Mother is doing fine. I wish you luck with her. Hurts us, to see them so confused and not understand what is happening to them. I will remember you in my prayers. God will help you to care for her. He does us all,was hard to see him go after such a long fight but it was peaceful , because I knew he knew where he was and was huging The GOOD LORD and then my Mother. They were so close all their married life. Thank you again for the nice words,I hope I was good for him. I gave it all I could,that is all any of us can do. When he didn't know me,I had to run fast to stay out of his reach. Bless his heart. My Dad had never raised his hand to any of us,he was a jolly,happy man, Hard working for an oil company,drove a school bus in the evenings and worked on other people's car in his garage. He loved to stay busy working,hated lazy people. He loved to help others. Was a good man to everyone. As I said,"I was blessed with good parents" but we can't keep them with us forever. God does know best. May you have it easy and she listens to you and things go smooth. Yes,even after all these years,I still miss my parents. May God help you to care for your Mother. Keep in touch,I do care,blessings to you and yours, Mildred

need some advice on how to act posted by Andi @ 02:26 AM November 21, 2008

Andi — Fri, 21 Nov 2008 02:26:07 -0000

Thank you Mildred, you have been very helpful. I'm sure your Father knows now just what a fine daughter he helped raise. There is a place in heaven right next to your loved ones.

Peace be with you always,

Andi

need some advice on how to act posted by Mildred @ 02:13 AM November 21, 2008

Mildred — Fri, 21 Nov 2008 02:13:11 -0000

Andi, Food being spit out sounds like Gerd to me. May be hanging in her throat,she gets it back up and spits it out,If it will not go down,she doesn't know what else to do with it. Also,some times if they do not like the food,they spit it out. If it has liquid with it,I would have the DR. check her throat out for Gerd. She could choke when it hangs up in her throat ,just my own idea only,since I have the same thing happening to me at times. Hangs in my throat, it's called acid reflux or Gerd When you said it had liquid in the food,it sounds just like some of mine at times. I have ro get to the bathroom fast to get it up and out before it chokes me. I have to drink lots of liquid with my meals. Makes the food go down easier. I only eat veggies and fruit and have to cut it up into small bites. Chew it real well. I have gastritis,so certain foods will hurt my stomach if I eat it. No spices or fried foods. Just plain old veggie and fruits only. Better than a stomach ache all night long.Now you see why I have to eat with lots of liquid and my food cut up real small. I do have Gerd so I couldn't help but say something to you about her spitting the food up. With our loved ones unable to tell us everything we need to watch out for anything unusual. . Hard to do but I did it for 7 years. So thankful I had the chance to be with him those last 7 years. God did bless me with wonderful parents. So I felt it was my job to care for them. They took good care of me so I had to return it to themHard to get someone in her condition to do all of that unless she still listen to you and does as you ask her to do?? My Dad listened at first and as the years went by,he lost it. So hard on us that loves them so much. Especially since they do not even know us toward the later years. Hurts our hearts to see them so confused. They do not understand what is happening,I felt so sorry for my Dad but I could only do for him for so long and then I knew I had to give it up. Hurt so bad to put him in the rest home but I could not catach him when he got out the doors. The neighbors helped me at times.I had to learn how to get my Dad to eat all over again. After he got worse,his taste changed completely. The things he loved to eat before would not be his choice later. I have had it thrown at me,the first time was a shock. I had never seen him throw his plate before. Bless their hearts,something went through his mind at the moment and he did not know who I was so he just didn't like the food either so he wanted to get rid of both of us so his own way was to throw it at me. I took care of him for 7 years. The last 2 years got beyond my ability so I had no choice. I would sit at the rest home for hours with him. Singing church songs that he loved to hear and he would sing with me for the longest time. Weird,he could not talk to me or answer me but he knew all the words to the church songs by heart. The last year,he could not sing but he would look at me and hum tjhem. Meant the world to me but I knew his life was a low quality of life. Oh how I hurt but God does help us get though it all. Had to carry me most of the time but we do get through it some way?? I hope she is just spitting it out on her own. Let me know if you don't mind. May God bless you and her. Best wishes, Mildred

need some advice on how to act posted by Andi @ 07:01 PM November 19, 2008

Andi — Wed, 19 Nov 2008 19:01:21 -0000

My Mom has Alheimezer's, sinec 2003, I have noticed just lately she is spitting after she eats, Mom eats very well, and enjoys eating. However, I have noticed that when she spits, it is not just spit, it is almost like the last bite of food didn't go down all the way, settling in her throat and she spits it back up and out.. I almost want to say vomit, but it's not really vomit, or even enough to be called vomit. It's not watery, or even bile, it is simply the last bite of her meal. Is it possible she is forgetting to swallow, I'm concerned...

need some advice on how to act posted by star @ 09:49 PM May 18, 2008

star — Sun, 18 May 2008 21:49:48 -0000

Hello Jamie,

Thanks for the input. The problem being it is difficult to get her to leave the house. Her dgtr says once she gets going, she is ok and actually enjoys herself. It is just the challenge of getting her to the first step. I did manage to get her to come and see my chickens and peeps at my house a couple of weeks ago, she loved it. I hope to try that again if the weather ever improves. Weather, I think, has a great deal to do with her moods. When it is rainy and dreary, she refuses to come out of her room, in fact last Friday, she even refused to take her medication for me, that is a first. No convincing otherwise did me any good. I felt defeated to say the least.

need some advice on how to act posted by Jamie @ 06:23 PM May 15, 2008

Jamie — Thu, 15 May 2008 18:23:55 -0000

Hey Star,

You might want to also try to plan some outings, for example going to a museum, park, library anything that would relate to something she used to like. For example my grandmother loves to swim so everytime I get the chance I take her to the pool. Things like this will probably help her trust you and will give you a common subject to talk about.

Hope this helps!

need some advice on how to act posted by star @ 08:29 PM May 11, 2008

star — Sun, 11 May 2008 20:29:01 -0000

Thanks for responding LauraL,

I am hoping to find ways to make my lady friend a bit happier, especially, on those dark days she has. I have talked to the dgtr and she says she finds it best just to leave her be alone instead of agitating her by trying to get her to socialize. I also hope in time, it has only been a few weeks, perhaps she will become more comfortable around me and we can ease into more areas. One day at a time, I guess that is best.

need some advice on how to act posted by LauraL @ 01:31 AM May 10, 2008

LauraL — Sat, 10 May 2008 01:31:54 -0000

Hi Star! I'm so glad you've found us.

As to caring for your lady, it may be best to take your cues from her daughter. Have a good long sit down with her, with pen and paper, and talk about how best her mother responds to caregivers. What she likes, doesn't like, what she responds to best when she's in an irritable mood. Is there a topic you could start up with the lady that would brighten her day every time and set her into a better mood? Those sorts of things.

Hopefully some more advice will come your way shortly! Best wishes to you!

need some advice on how to act posted by star @ 12:40 AM May 10, 2008

star — Sat, 10 May 2008 00:40:33 -0000

Hello I am new to this site. I am looking for advice on how to deal with caring for an 81 year old lady with alzheimers. This is a new experience for me and i am not quite sure where to go or what to do. Her dgtr tells me she used to be a very vibrant, outgoing and busy woman, she is now much the opposite. She is a really sweet lady, shy and quiet most of the time but she has her days where she is very anti-social, wants nothing to do with anyone.and very irritable, I am not sure how to go about caring for her, I would like to help take some of the burden from her dgtr such as bathing, pedicures, etc but not sure whether I should be firm with her or not. Help!

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