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Thread: Alzheimers

  1. #1
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    Is anyone out there the primary care giver for someone with alzheimers or dimentia? I have a question. Thanks

  2. #2
    Senior Member theoldgraymare's Avatar
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    My husband's aunt has dementia. We and another cousin have moved her down here into a senior retirement home, but it is becoming apparent she is going to have to go into assisted living very soon. It is so sad and at the same time so aggravating! I doubt I know enough to answer your question, but if I can I will.

  3. #3
    Super Member amandasgramma's Avatar
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    I'm not the primary care giver....but my grandmother had it and I used to work in a nursing home on the floor with Alzheimer's and stroke patients. What's your question.

  4. #4
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    Post the questions and I'm sure that you will have several answers. There are very few families that have not been touched by this disease. I have taken care of several over the past 20 years in their home or mine......

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

  6. #6
    Super Member Izaquilter's Avatar
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    Go to Alzheimer's classes at local hospital! I did, it showed tit for tat what that ugly uncontrollable disease does. Patience, patience, patience. I am soooo glad I understood it was the disease that had taken over & wasn't actually my mother. We are all here to help you

  7. #7
    bkb
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    I am a nurse with 15 years in geriatrics , many had dementia. I will try to answer your questions if you want me to.

  8. #8
    Cyn
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    Been there. Done that.

  9. #9
    Senior Member hannajo's Avatar
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    I worked in a facility for people with alzheimers and dimentia for a several years. I was involved with all of their day-to-day care, as well as seeing their interactions with their families. I'm more than willing to share my experiences if it would help you.

  10. #10
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    Thank you guys for responding. Reading your messages has helped a lot and has also made me see thngs that I knew but don't think I wanted to actually admit to myself or anyone else.

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

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

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

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

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

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

    Betty

  11. #11
    Super Member amandasgramma's Avatar
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    I'm sure others will be able to help you more, but I can say that yes, she's acting normal for someone with those conditions ---if there IS a normal for it! It could get worse, with alzheimer's they can/do forget to get dressed, or have a habit of taking off their clothes (my grandmother). She can do a LOT for someone her age....be thankful for that. My grandmother couldn't dress herself or feed herself. If you want to do something to make her last years happy, then if she wants to eat straight sugar, let her. She'll die happy. She may or may not know what's happening.....The hardest part will be not getting mad at her. She can't help what she does. Yes, my grandmother went thru a mean streak. She also hid things and then would call the police and have them come to the house saying she'd been robbed. I would suggest that you DO go to town, let her get upset. YOU need to take care of yourself, too. She'll either keep getting upset or she'll get used to it.

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

    Best of luck! {{{HUGS}}}

  12. #12
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    I live in a very rural area and the office of the aging is the place to go for lots of answers. There are also funds available to help with your moms care.

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

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

  13. #13
    Super Member fleurdelisquilts.com's Avatar
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    She sounds like my mom who died recently of cancer but had Alzheimers for years before the cancer. In her own mind she is perfectly "normal" because people with Alz don't think or act the way we do. I was one of my mom's caregivers along with my dad. I know first-hand how difficult it is for you. I'll make a few suggestions that I'm sure will make your life easier, but they are suggestions only. If anything doesn't work for you or if you're not comfortable with anything, just ignore the suggestion. That's really important.

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

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

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

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

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

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

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

  14. #14
    Power Poster sueisallaboutquilts's Avatar
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    Betty, I'm a nurse but not an expert here. Sounds more like dementia than Alzheimers to me though.
    I honestly don't think she is aware of her life passing by like you or I would be.
    You've been given some wonderful advice by the others.
    Check out help in your area and above all let her know how much you love her frequently.
    We are all here for you. PM me anytime.
    HUGS, Sue

  15. #15
    Senior Member maryb44662's Avatar
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    Quote Originally Posted by BETTY62
    Is anyone out there the primary care giver for someone with alzheimers or dimentia? I have a question. Thanks
    Hi, I feel for you. My husband had that for 8 long,long years before he passed away in 2005. It was a sad and long good bye. I do not wish this desease on anyone or the caregiver. It is devastating to say the least. It was a blessing when the Lord took him. Hang in there. Prayers are with you.

  16. #16
    Senior Member maryb44662's Avatar
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    Quote Originally Posted by BETTY62
    Thank you guys for responding. Reading your messages has helped a lot and has also made me see thngs that I knew but don't think I wanted to actually admit to myself or anyone else.

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

    Betty, everything you have mentioned is parr for the course. It will only get worse, never better. It was hard when my husband didn't know me anymore. The communication wasn't there anymore. It is very, very hard to accept. He was not the man I married when he died. But, on the other hand, it was the desease, not him, that had taken his mentallity away. Again, my prayers are with you. Take care of yourself too. Your mom has lived a long healthy life up until now and I know you are greatful for that. Hang in there!!

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

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

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

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

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

    Betty

  17. #17

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

    Colleen

  18. #18
    Super Member leatheflea's Avatar
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    My MIL lived with me and she too had dementia. It was hard for my children and husband because they didnt understand her like I did because I had worked in nursing homes all my life. Its a real strain on the family. Hugs to you my dear, find a way to take time for yourself so you can better take care of her.

  19. #19
    Junior Member kwiltamomma's Avatar
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    Thanks for your questions. I am going through a similar situation with my mother. It is hard not knowing how to handle things. The advice here has been helpful for me also.
    julie

  20. #20
    Senior Member trueimage's Avatar
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    My dad has dementia. I had asked the doc if it were possible for my dad to take anti depressants and if that would help the mood swings. He just gave my dad a questionaire and decided dad wasn't depressed. ugh....! The mood swings are horrible and he is not the same loving man that raised me. I'm going to bring it up to the doc again. It's a painful disease for the family.

  21. #21
    Super Member LeeAnn's Avatar
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    I'm the primary care giver for my DMIL. She is in advanced stages. She can't hold a thought for a minute, ask the same questions over and over. Has trouble walking but can still get around with help! Thankfully she still has the sweetest spirit. We'll keep her at home as long as possible. It's by far the most difficult job I've ever had. May God bless for all you do.

  22. #22
    Senior Member hannajo's Avatar
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    Quote Originally Posted by BETTY62
    She also has developed some very odds habbits. She no longer wants to go outside of the house even to sit on the pourch and get sunshine and fresh air.

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

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

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

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

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

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

  23. #23
    Super Member fleurdelisquilts.com's Avatar
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    Sorry that I got caught up in my own grief last night when responding to your questions. I hope I helped rather than depressed you even more. I also didn't mean to imply that it was fun in any way, I just hoped that you would see that I tried to make the most of the situation.

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

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

  24. #24
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    I was the primary care giver for my mom. I also ran a clinic for Alzheimer's patients that was housed within an 180 bed Alzheimer's facility.

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

  25. #25
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    Bless you Julie. I know it's hard. I am doing the best I can but feel like I should be doing more. I have talked with the doctors and other professionals but they often talk in medical terms and provide me with the medical side of the illness and I needed more information about the day to day stuff. It was so nice to have the input from others who have been a primary care giver. God Bless you and good luck.

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