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Hi Janet:
I understand how difficult it must have been when you lost your mom, and still is now realizing how hard Altzheimers is on everyone. My mother had Dementia, and passed away at almost 92. She really had very few bad days in terms of her physical health, though the torment of dealing with the Dementia was hard to watch. She was very feisty, and it helped us to see her that way. She did not reveal her feelings much. She was a strong lady, and always focused on the best things in life. My father was her main caregiver at that time, but it was becoming very hard on him. Mom would not let anyone else help her besides him and my husband and I. That was just who she was. Now with dad's decline, we have had to get some additional help in the house at times. It is nothing consistent at this point, but he is still functioning pretty well and has just started on Aricept. He is 90 years old, and happily living in his own home presently. I don't believe people mean to be unkind by making jokes, but they are pretty exhausted with trying to manage with this disease. Since I am an only "child". At 51, child is not something you think of being; but anyways, there are no other siblings to get to help my dad. It is not easy for anyone; but is harder when you have no one else to look toward for help. I think sometimes people laugh instead of crying. I know we don't think this is funny, but at times it is the only thing that keeps us from breaking down completely. We have always tried to laugh in our family as much as possible. Hugs, and best wishes to you and your family. I think it is amazing your father is 93 and doing so well. I always love to hear of stories like that. Where does he live? Is he living by himself? Wendy
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Hi Wendy - thank you for your kind words and sharing your story. My dad lives in Duluth, MN, in the assisted living facility that he originally moved into with my mom. She had to be moved to the Alzheimer's unit and was only there two days before she fell when she got up in the middle of the night and broke her arm. She was getting to the point where she couldn't eat much anymore, so my dad would give her ice cream every night at 7:00 p.m. - very sweet. He has always called her the love of his life. My dad actually wrote a memoir over the months following my mom's death. I'm now trying to help him get it published - not an easy task. While his writing has great significance to us, it doesn't have much wider appeal. But I will keep trying for him. My sister and I had some great laughs about some of my mom's antics - we couldn't do anything but laugh. One time she looked at me and said, "you are so cute." I responded by saying, "I take after you mom." She thought that was very funny! Thank you reminding me of that!
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Janty, have you looked into self-publishing? I have absolutely no experience in this area, but I was toying with the idea of writing a book, and found websites such as:
http://www.lulu.com http://www.fonerbooks.com/paper.htm http://www.crystalreportsbook.com/selfpublishing.asp |
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Hi DJ (that's my niece's nickname!).
Thank you for the link - that was incredibly helpful. I looked up the stages a few days ago, but I don't think that whatever site I found was quite correct. So yes, Mom is almost at stage 6 it looks like. I know how lucky I am with taking care of her. I often feel like I don't deserve to be upset when compared to what so many people go through. But it is what it is and no matter what the situation, it's horrible for everyone and there's nothing in this world to make it easier for us. Nothing except the caring of other people and the support of the ones who love me. Thank you again for the advice & suggestions. It's such a huge site that I'm still just learning my way around. And my dh needs the puter so I guess my education will have to be put off for another day or so!
Dix Hills, Long Island |
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Hi Janet:
What a wonderful dad you have! I think it is so nice to hear how he brought ice cream to your mom. I, for one, would be interested in reading your dad's story since I truly appreciate these kind of love stories. We had some funny incidents with mom over the years, but while I know she was very angry over losing her ability to drive (we decided it was not workable); she really gave us a fight when we indicated it was time to stop driving. At 90, I loved this about my mom. She never focused on the fact that she was too old to drive. Of course, we didn't think it was safe, and realized the danger involved; but I loved my mom for her unwillingness to give up in life. This was true for many things. One story is a bit morbid but kind of what my mom's sense of humor was about. We were passing a mortuary which was on a major street near my mom's, and I was deciding where to turn. Mom looked over, and said I'm not ready to turn in here yet. This was kind of characteristic of her humor. We laughed as at that time she was in her 70's, I think. It was a long way from thinking we were facing mom's mortality. While I knew her well and loved her so much, I knew when she had suffered Dementia for about a few years and was approaching 92; life was very hard. It was not enjoyable, and quality of life was lacking. It is a bit harder with dad now. I am having lots of emotions about him passing on also. It has been hard to watch him become very frail, and harder still to realize that I cannot stop things from changing. My husband is so wonderful to my father. I was a true daddy's girl growing up. It sounds like you were the same. It was only after my mom passed that I realized I was also a mommy's girl. Watching people we love get older and lose their spouse is very hard. My parents sound exactly like your parents. They were together from the time they met, and very little time was spent apart. I do find some peace in realizing that one day they will be together again. Though, I will never be ready to lose my father. Wendy |
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Hi JAB. Yes, we have looked into self-publishing but it is quite time consuming and costly. Wish my dad had more time and money! If nothing else, I will make sure his book is distributed to our immediate and extended family. Thanks for your suggestion.
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Hi Wendy. Oh, yes, your parents sound so much like mine. It's so sweet, isn't it. I absolutely love your mom stories! My mom was not ready to quit driving either, but when my neice received a call from the gas station where my parents went all the time telling her that my mom had just "gunned it through the car wash" we knew she had to stop driving! We still laugh about that! Yes, I have always been a daddy's girl, but I probably spent more time with my mom than any of us because I am the youngest. I sure do miss her. Thanks so much for sharing - it is so helpful to know that so many others know exactly how I feel.
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Hi Janet:
Well, the "gunning it through the carwash" would probably not been my mom, though I love that story. She was a bit aware that her driving was a bit scary, though she did try to hide it. She kept coming home with scratches on the car for a while, and eventually told dad a truck had hit or a bit when there was a bigger dent in the Cadillac--at least she had a big car to do this in, but still dad knew it was getting bad. He would call me in for help to deal with my mom. The battles were pretty bad, especially when we tried to get someone else to drive her places. I would show up, and tell her I would drive her. When I couldn't do this, we had another woman who knew mom and volunteered to take her to the Beauty Shop which she liked to go to. Anyways, she decided she was driving, and no one else was. It didn't really work when she realized we had hid the keys. I know it was in her best interest, and for the safety of the rest of her community. Still, she maintained this approach most of her life. She was a very independent person. Mom sewed, knitted, needlepointed, crocheted. Anything creative she could do wonderfully. Unfortunately, I don't have this skill. I miss her sense of humor and laughter when life was much easier. She and my dad had an unbelievable relationship. Their doctor said they were soulmates. I think anyone who knew my mom liked her. She spoke her mind. Please write back more about your mom. I would love to hear, and your dad also. Hugs. Wendy |
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Hello, I am from the Detroit area and my mom who is 92, has been recently diagnosed with early AD. Up until 2 yrs ago she was a very feisty senior, walking 18 holes of golf twice a week, bowling and playing bocci ball and driving to church etc, Unfortunately about a year ago she had an auto accident where she blew a red light and hit two other cars. Thankfully she wasn't hurt badly, but it seemed to kick in the AD (or at least I noticed it more). We took away her license, her car was totalled and it seemed that from that point on, I have been the one who has 'taken charge of mom.' I figure she has always been the strong independent one for us through out the years and now it is our time to make sure she is able to live out her years in the comfort and maanner that my dad so lovingly provided for her financially and spiritually.
I have been remarried to my DH for 4 years and have two lovely daughters who love grandma but unfortunately live out of state and are busy going to college working and doing what 20 somethings do. I turned 54 this year and am beginning to look at my own life by learning through hers. I am in this journey pretty much by myself and an older brother and SIL who are retired teachers and 'very busy' with church, coaching and being grandparents. Unfortunately I have taken on the responsibility of watching after mom with the tough stuff like apptmts, shopping, health, finances and monitoring her meds, doctor apptmts and other support. My husband and I work 60 hour weeks and I travel some for my job. My brother and SIL want to send mom to assisted living but I am trying due to her still being pretty able, to help support her dignity and independence by keeping her in her own home until the point we have to make different decisions. I am hoping I can obtain some support here and ideas here for making her comfortable. I always seem to be the one that has to drop everything or have DH drop everything when my SIL worries about my mom or when they can't due to 'their schedule.' My brother takes mom to church with him each Sunday and then to lunch with her grandkids and great grandkids (my suggestion), but it seems that all the other tough stuff (legal, medical, shopping etc) winds up being my responsibility. I look forward to being here and hope I can learn something and share my experiences too. Boy some days are overwhelming. Mom is still in her home for now. I am looking at some in home care to ensure that she is taking her meds and eating (she lost 6 lbs in 6 mos and wasn't taking her Thyroid meds.) I think if I can get her to take her Rxs regularly she will be able to cope, but recent audit of her pills found that she isn't doing that. She still keeps her housekeeping, laundrys, shops, goes to church with my brother weekly and get around great. She is physically able and enjoys getting out, I just wish to try and keep her active if I can. My question is trying to determine how to find some individual to come out a couple of times a week to get her shopping, to the hair salon or get her nails done or perhaps to get her out to the Senior center. What kind of things do you look for in a caretaker and what type of questions should I ask? Also how do you 'warm' mom up to the issue of having assistance? My SIL is bent on getting her in 'a nursing home' I hate that idea and think that mom will lose all sense of her surroundings, routine and where things are kept (which she does pretty good at right now). Any thoughts? I love my mother, but unfortunately can't handle working, my own family and juggling the support she needs. My brother on the other hand hasn't been much support on this at all. Help That which does not kill us makes us stronger. |
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Hi Chromediva:
I am in a similar position that you are in. I don't know about getting a caregiver as my 90 year old father, who has the early stages of Altzheimers, is living on his own in his home. We did have his doctor visit him about a month ago. Yes, this amazing doctor came to the house. Anyways, he indicated that whenever possible it is preferred that those folks who are able to stay in their home do so. The reason is that changing their environment late in life (with Altzheimers or Dementia) brings about a downward spiral generally. While it is necessary for those folks who are in constant care if the LO does not yet have to have around-the-clock care; it is preferable that they stay in whatever environment they would like to and that makes them happy. For my father he is most comfortable in his own home. I know some people might be potentially dangerous to themselves if left on their own, but we do not have this situation yet with my father. I believe my father would give up on life if we moved him out of his home. It is where his memories of my mother and our family life are. If there comes a time when medically he needs more attention than we can give, we will have to move him to an Assisted living home or consider having someone come into the house to live with him. I am an only "child". There is no one else but me and my husband to help my father. I have a "Special" child who has Autism, and therefore my hands are a bit full. I see dad about every 2 weeks. My husband stops nightly on his way home from work to check on my father. We monitor his medications closely, etc. There is a lot of work that has to be done. Even though I don't visit as much, I am busy helping dad with his needs by communicating to his doctor as necessary. Dad and I talk daily. It is not easy, and we are trying to do everything to have dad's later years be happy ones; much like you are doing with your mother. I understand that many times there is one person in the family who takes on more than others. I am sorry that your brother isn't able to help a bit more. It is hard for everyone involved to juggle the needs of their own family and the needs of a parent who has been impacted by Altz/Dementia. I know for certain that you most likely will not look back, and feel you did not do everything you could to help your mother. That may not be true for your brother. Some of this may be emotional also. It is not easy for people to see their parents age, and be more dependent. I believe that my father and mother were so wonderful growing up. I would do anything to help them. My mother passed away from Dementia back in 2006. I hope you get more information on finding a good caregiver. The money involved in doing this was a bit unworkable for my father and us. He has concerns for my daughter's future, and is trying very hard to make sure not to do anything that could jeopardize her future. Hugs and best wishes. Wendy |
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Hi
My name is Roberta and I live in NJ. I'm 57 years old and live with husband of 11 years my dad who is 86 and my mom 85 (AD). I have 2 sons 36 and 33 and 4 wonderful grandchildren that are the joy of my life. Mom is very scared and extremely anxious. She shakes so badly. She is in stage 4-5. I very blessed to have family that shares in the care-giving. My husband, dad and brother all help. I work part-time giving me time to take care of mom. Roberta |
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Welcome back to the message boards, Roberta. We're so glad you're part of this community of people who share, advise, vent, and tell it to you straight about this disease.
You may want to post your comment about your mom's anxiety in the Caregivers forum. Anxiety and agitation are very common in the mid-stages, and there are medications that can help, as well as changes you can make in her environment. Carolina Songbird "Grant that what we sing with our lips, we may believe in our hearts, and what we believe in our hearts, we may show forth in our lives." |
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Hello,
My name is Pauline. I am 59, soon to be 60 in January. My husband and I live across the street from my brother that has a tracheotomy, is house bound and bed ridden. This past August we had to move my Aunt up from South Florida (We live in Central Florida on the east coast)because she could no longer live by herself. She is 85 and WAS still driving! She had a few incidents with getting lost a block or so away from her home and wasn't feeding herself or her two dogs. Police were involved. So now she lives across the street with my brother and a man friend that does the daily care giving for both of them. My husband, me, and Johnny (the man friend)share the care giving duties. All 3 of us have been trying to attend a support group and classes for Care Givers at Leeza's Place. Wonderful association. We also have been trying to take the Aunt to a daycare facility at least once a week. This disease is horrible. I'm glad to have found this site. Sometimes I just need to vent. Not much time at the moment. Just wanted to tell a little about the situation and say hello. I'll "speak" more another time.  3rd generation native Floridian,Caregiver of my 85 yo paternal aunt, my bedridden/housebound 58 yo brother that live across the street from us with a live in daily caregiver, 2 dogs, 6 cats, 52 yo Canadian Native American husband...Laughter IS the best medicine. |
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Welcome, Chromediva!
I also live in SE Michigan, if you can call Ortonville that  . I found the ElderCare link to be helpful in finding different kinds of assistance.ElderCareLink http://www.eldercarelink.com/ You should also contact your county's Area Agency on Aging. They should have a resource directory of doctors, services, facilities, etc. I feel terrible for what you are trying to deal with while trying to get some semblance of normal life for yourself. It certainly isn't easy. My brother and I moved my mom 4 years ago to be near us so we could watch over her. It wasn't possible from 700 miles away. I still worked for the first year she was here, but it sure was difficult. Since I retired 3 years ago, her care has just about consumed me. She is now in a NH, and it is still a huge job. You have the compassion of many folks here in similar circumstances. I hope you find many answers to your questions, as well as comfort from the support you'll receive. Blessings! "dj" daughter of mother with AD "Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28 |
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Welcome, Pauline1950!
You have indeed found a wonderful source of support and information. Since you didn't ask any specific questions, I'll just say we're glad to have you aboard. Hope you have more time later to get to know us. And we're always here to help out if we can. "dj" daughter of mother with AD "Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28 |
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WOW! Today she was sitting and talking with Johnny and had him cut her nails for her. This is what he relayed when I had to call him and tell him she was over here at our house...without her dogs. She just up and left the house about 5 minutes after that. While she was here she, yet again, asked questions about why she was here and stuff. DAMN THIS DISEASE IS HORRIBLE! She asked how I was related to her and who my brother was. For the first time she "sundowned" and my husband walked her home. After that Johnny and I were talking on the phone and he told me she asked him..."Is there any such thing as hot water here?" She showers daily. She has her own bathroom. All sorts of incidents like that happen all the time now. BUT...she does at least know where her "home" is now. That's a good step.
Btw, she's on Aricept and Namenda, Prozac. Thanks for the welcome. Nah, no questions right now, just good to be able to perhaps chat with others going through same thing. 3rd generation native Floridian,Caregiver of my 85 yo paternal aunt, my bedridden/housebound 58 yo brother that live across the street from us with a live in daily caregiver, 2 dogs, 6 cats, 52 yo Canadian Native American husband...Laughter IS the best medicine. |
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Pauline1950,
May I add my welcome to the others?! Sounds like you're doing a great job. This is sure a difficult disease for everyone concerned! If you ever need immediate assistance, please call the 24/7 AD Helpline @ 800-272-3900. Again, welcome to OUR family! Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
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Hi Lisa,
Thanks for the welcome and the number. 3rd generation native Floridian,Caregiver of my 85 yo paternal aunt, my bedridden/housebound 58 yo brother that live across the street from us with a live in daily caregiver, 2 dogs, 6 cats, 52 yo Canadian Native American husband...Laughter IS the best medicine. |
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Hi, My name is Stephanie, I have the screen name wvstephie. Both my father and my mother in law have alzheimers. My mother in law lives with us at the moment. She will be with us until Feb and maybe indefinately. We live in Az and she stays with my husbands brother in Ca as well. My father in law passed away two years ago. At that time we found out that Mom had alzheimers. She has been "forgetful" for many years. Her husband kept the extent of it hidden pretty well. When he was on his "death bed" he made the brothers promise to not let Mom live alone. We soon found out it was a nevessity that she not live alone. She is not happy about it and the lets us know on a regular basis. My father has alzheimer and he and my mother live at my sisters. He is diabetic and has vascular dementia. His alzheimers is so different from my mother in laws. He has incontinance issues and a few other more obvious problems. That's my background. I'm looking for others who are in caregiving situations who have ideas on how to deeal with the every day routine and situations. Thanks for being here
 Stephanie |
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[QUOTE]Originally posted by Pauline1950:
... I live across the street; So now she lives across the street with my brother and a man friend that does the daily care giving for both of them. I am the caregiver for my nearly 90 year old neighbor. We are connected by a baby monitor. If I am there and need to call for urgent help, I can just call out for my husband or daughter to come quickly. You have the blessing of someone in the home, this might give him a break - and you too! |
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Welcome to the best support group you will find on the web. You are dealing with a very full plate and I am so sorry. This thread that you have posted under is usually for telling someone a little about yourself and then go to forum and start your own thread. Just hit the red tab that says start your own discussion and under that click you will see discussion poll. click on discussion and start your thread. You will get many helpful remarks as this is a situation that we find ourself in more than you would expect. Many of the members do not always come to this thread unless they want the history of someone that they are posting to. I am caregiver to my 80 year old Mother, in stage 6. This site has been a God send to me in advice, and support. The chat room in the evening is usually working full and we just vent, laugh and cry with each other at the end of our day...then we know that we can do it again tomorrow. Please come often to this site and post however you would like. Welcome, Sheryl In this life we cannot do great things. We can only do small things with great love. Mother Teresa |
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Hi Sheryl, AH HA! Now I have a question. The only stages I've been told are 3...where can I find the answers to how many stages?3rd generation native Floridian,Caregiver of my 85 yo paternal aunt, my bedridden/housebound 58 yo brother that live across the street from us with a live in daily caregiver, 2 dogs, 6 cats, 52 yo Canadian Native American husband...Laughter IS the best medicine. |
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Hi, my name is Rosemarie and I am my moms caregiver. I have posted a few times, but never came here to tell you my story. I'm a 50 year old very menopausal women taking care of her very frill 82 year old mother who has dementia. I have a 27 yr old daughter that lives up north with her boyfriend, she is a teacher. My son is 22 and in his last year of college. I went from taking care of my children to taking care of my mom. I think my husband and I had one good year to ourselves. I have always lived very close to my mom and dad. Daddy passed 10 yrs ago, brother passed 20 yrs ago. I have a sister that is 12 yrs older. She really can't handle the caregiver thing. She would rather put mom somewhere, plus she llives 8 hours away. My husband is a saint. He loves my mom very much and has told me over and over again she needs to be with us. He gives me times on the weekends to go out with the girls. He can tell by Saturdays I need to get away, even if it just to go to the drug store. Mom started day care this week. two days a week for 6 hours a day. I have a lady that comes in 1 day a week. She will even come on Sat. so we can go out together. Mom broke her hip in July, so I'm dealing with the damn walker. I can honestly tell you I never thought this would happen to my mom. She has had so many other health issues, I was sure that one of them would be the cause of her death. So, back to me. I really want my life back. I stayed home over 18 yrs to raise my children. Always very active with them. Went back to work 9 yrs ago, to give me something to do. Love it! Now I only work 6 hours a week. Sometimes I feel like were missing out on so much. All of our friends parents are either gone or very healthy. Always getting invited to do things, but can't go because of mom. Gee! I think I'm whining. I also wanted to let you know that I read everything everyday and that I have learned so much about what is going on with my mom. Some of you have been at this a long time, and I can only say bless you. It really does take special people to deal with this day in and day out. I applaud you all. I'm in this till the end, I just hope I can do it. Peace and joy to all.
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http://alzheimers.boomja.com/S...zheimer-s-26575.html |
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Hi Rosemarie D,
Thanks for sharing your story with us. Wow, you've been a busy caregiver for a lot of years! There's nothing wrong with wanting more of a life for yourself! Is there any way your Mom could go to daycare 5 days a week to give YOU more time?? Have you called your local Alzheimer's Assn for help and guidance yet? They may assist you as well as have a support group. To locate you chapter, please go to the bottom of this page and click on "Chapters" and follow the instructions. Good Luck. Please, keep coming back!! Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
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Thanks JAB. Enlightening AND depressing. Appreciate the info.
3rd generation native Floridian,Caregiver of my 85 yo paternal aunt, my bedridden/housebound 58 yo brother that live across the street from us with a live in daily caregiver, 2 dogs, 6 cats, 52 yo Canadian Native American husband...Laughter IS the best medicine. |
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Hi, I'm Marcy and I'm just beginning the whole AD experience. My 87 year old mother was diagnosed with early AD in the spring. She lives independently in a Senior community in Florida, I live near Philadelphia and my sister lives in northern NJ. Long story short, Mom is doing well so far, she's on Aricept, Welbutrin for depression and is about to begin a Phase II clinical trial through the office of her neurologist. She voluntarily gave up her car this summer, and has done everything possible to help my sister and I be "in the loop" as regards her financial and legal circumstances. We've all discussed the fact that the day will come when she really shouldn't live by herself, and have agreed that when that time comes we'll bring her north. After a couple of fairly scary phone conversations in which Mom was clearly struggling to marshall her thoughts, I decided it might be a good idea to start checking out ALFs in my area before we need one.
Now, of course, I'm totally confused. I've been to visit several different kinds of ALFs, from places with high-functioning residents (both AD and non-AD) to a place where the entire population consisted of residents with AD. None of these places will take Medicaid, so when Mom runs out of money and needs to tap into Medicaid to pay for her care, we'll have to move her. Everyone tells me that we should bring her north while she's still functional, as she'll adapt to the move more easily, but I know that, if we move her to an all-AD community while she's still more or less cognizant of what's going on around her, she'll be totally freaked out. We think that she has been so cooperative because she either has no idea what's in store for her (which I find hard to believe), or because she's hoping that if she ignores it, it will go away. Moving her to an all AD ALF will show her her future in a way she won't be able to ignore, and I fear the result. Anyway, I can't figure out where I should be looking for eventual placement. Do I look for a large ALF with lots of high-functioning residents but without an AD unit in the hope that they'll be able to deal with her as she deteriorates? Do I look for a mid-sized ALF with both a "regular" Assisted section as well as a secure AD unit for future need? Do I look for an all AD ALF that may freak Mom out but probably not for long? Oh, and on top of everything else, she has Macular Degeneration, but her opthalmologist has been able to save the vision in one eye by giving her injections (I know, eeeuuuwww!) that, eventually, she'll have to give up. At that point she'll lose most of her vision, so that further complicates the issue: Do I look for an ALF that is smaller, to make it easier for her to navigate when her vision declines, or look for a larger one with a more varied population but more opportunity to get lost? Sorry for the length of this post, but this is the first time I've been able to address my questions to people who will understand what I'm asking. As my 25 year old daughter says at times like this, "my brain hurts." I welcome any and all suggestions/thoughts/approaches. Thanks for listening. |
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Hi, Marcy, welcome to the forum.
This thread is usually used just to introduce ourselves. Our members are busy, and often don't have the time to read this thread. You'll get a lot more responses to your questions if you start a thread of your own. Click on the "start a new discussion or poll" button in the colored bar at the top of this page, then select "discussion" from the tiny drop-down menu. Fill in the boxes, click on "post now" and you're done. |
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Thanks, JAB, I'll do what you suggested. Sorry for posting my question(s) in the wrong place - just trying to learn a new system!
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You didn't post in a "wrong" place ... you just won't get as much attention here.
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Dear Marcy Rene,
Hello. May I add my Welcome to JAB's? Wow, you have a lot on your plate! And, you are asking some great questions. JAB is right in that if you "start a New Thread" about this you'll get a lot more input. You may want to make a trip to see your Mom in person and speak with her doctors before you move her. Also, there is a 24/7 AD Helpline that you can call to get some assistance. Call 800-272-3900. Good Luck and please, keep us posted! You may, also, want to contact your local AD Assn for help/advice. To locate your chapter please go to the bottom of this page and click on "Chapters" and follow the directions. Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
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Hi. My name is Lynn and I live in SE PA with my fiance, who is amazing. I care for my mom who lives about an hour away in DE.
I'm 32, so younger than a lot of people who take care of AD parents, and currently have no children. I guess I'm getting into that "sandwhich generation" thing. Anyway, my dad died in late '07, and that's when mom's "weird" behavior became noticable to others around us. I thought I had noticed something in late 2006, but my dad brushed it aside. Once he was gone, so was her smokescreen, and my aunt and I (mom's sister) went to a neurologist for a diagnosis in Summer 2008. At that time, she was diagnosed with early/mid-stage dementia, most likely alz. Got put on Aricept and Cymbalta, both of which worked for a little while. But as her disease has progressed over the last few months, she's started forgetting to take the meds. We estimate she's moved to Stage 4 dementia/early stage ALZ. Mom lives in the house she and dad had for the last 16 years; we're getting it ready to sell and hopefully move her into a progressive retirement place nearby. My Aunt lives close by my mom and sees her almost every day, and I call her every day. She's lonely living by herself, and wanders around the neighborhood or sleeps all day. On or off with her. We hope the retirement place with all its activities will help. At this stage, my biggest concern is getting all the financial and legal stuff right. My younger brother lives abroad and cannot help in any way, but luckily I have cousins who are stepping up to the plate without complaint and giving me guidance. I guess for now, what I've learned is that I'm primary caretaker for a reason--I'm learning patience (never my strong suit) and it's bringing Mom and I closer together (we always butted heads). I realize that love is a never-ending well, from the actions of my fiance (who I met right at the beginning of all of this), my Aunt, and my cousins. No questions for now, but I read all the entries with interest. It helps knowing that I'm not alone. With hope, Lynn Learning to love all over again. |
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Hi, Lynn, welcome to the forum.
My deepest sympathy over the loss of your father, and now your mother's illness. I assume your mother is pretty young, too? While you are indeed younger than our "average" member, we do have caregivers much younger than you, and also caregivers in your age bracket caring for AD spouses or siblings. This disease can strike very young people. Since your mother is still early-stage, you may be able to help her have a much longer and better life than if she'd been diagnosed when further along. Has the doctor discussed adding Namenda to her meds? Or Axona? Other things you can do to help slow down the disease: See what you can do to get her to eat a Mediterranean diet. This has been shown to help prevent the onset, and slow the progression, of MCI and AD. Lots and lots of exercise, both of the body and the brain. Make sure she gets her flu and pneumonia vaccines, too. Participation in the retirement community activities will be good for her, as you apparently already know. Would you/she be interested in participating in a clinical trial? There are quite a few exciting new drugs coming down the pipeline. |
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Hi my name is Kim. I live in MD and sometimes my name will come up as MDgranddaughter (dunno why). I am the sole care giver of my grandparents long distance. They live over 4 hours away so this has been challenging and a strain on my own family. Although this disease is unforgiving, I personally have been able to heal quite abit just from being a caregiver. I believe in GOD and the power of positive thinking!
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My name is Kelly and I am caring for my 85 year old grandmother who has been diagnosed with Alzheimers. It's been a real challenge and some days are more difficult than others.
I'm here because I need the support and the outlet to talk with other people who understand what I'm going through. My grandmother, Nana, has been having problems for about a year, but it's only been in the past four months that she's gotten to a place where she cannot be alone. I am committed to keeping her out of assisted living because I don't feel it's the best fit for her, or me. She still has some moments of lucidity - and in those moments she often becomes very depressed because she wants to go home. She doesn't understand what's happening to her, and is often very fearful of the world in general. She's frail, and vulnerable, and I just want to do the best I can for her. |
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Kelly
Welcome to the best support you will find. Please place apost in the caregivers forum as it is more read than this thread. So sorry for your reason to be here but sounds as if your grandmother has the best caregiver. I am caregiver to my 80 year old mother and plan to keep her at home as long as she is not violent ever. She is stage 6 and will not get out of bed. I found this site on a long Feb. night and I was pulling my hair out. A God send is all I can say. You can post in the forums, start your own threat and visit the chat rooms. Support is everywhere from people who absolutely understand where you are at. Welcome and come often. Sheryl In this life we cannot do great things. We can only do small things with great love. Mother Teresa |
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Hi Kelly,
I take care of my Grandma too. She's 93 and like you, I don't think an ALF or NH would be a good fit for her or me. Feel free to start any threads or reply to existing ones. ______________________ Contact your local and federal representatives to get financial support for providing care for your loved ones at home. Ask them to support full funding for the Lifespan Respite Care Act. |
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Hi,
My name is Jan. My Mother is is in the severe stages of dimentia. I have been with her every day for several years now helping her. She is currently living in a wonderful, catholic skilled nursing facility and we have hospice care. I have 5 siblings but haven't had much help or support the last several years. Four of my siblings live in the same city. Fortunately, I have a wonderful husband and daughter (she starts med school next year) who are loving, compassionate and supportive. I should have found this site a long time ago..........this has been such a sad and difficult time in our lives. Guppie |
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Guppie, welcome to the message boards. We are glad you found us.
I am so glad you have found such a great place for your mother. It seems in most families there is one sibling who takes the bulk of the caregiving, regardless of where people live. Please come back often and join the discussion! Carolina Songbird "Grant that what we sing with our lips, we may believe in our hearts, and what we believe in our hearts, we may show forth in our lives." |
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Hi, I'm Kathy and it's my dad who has dementia, and no I don't know exactly what type. He was dx in 2004. Looking back there were signs before that, but a lot was blamed on his poor eyesight.
I never really looked into this disease before now, but had to pull my head out of the sand recently when dad had to be hospitalized and committed to a psych ward bc he thought mom was trying to kill him. He's a bit more stable now, but we don't know what is going to happen longer term. From the neck down, he's perfectly healthy for a 74 yo. It's from the neck up that we're in trouble! My 75 yo mom is his primary caregiver. She's diabetic, a uterine cancer surviver, has a shunt in her carotid, and nearly died w/ aplastic anemia several yrs back. My bro and SIL live half a block away and are her main support and have been great. My bro runs up to help her w/ whatever she needs done. My sis is also local. I'm on the other side of the country. Kathy in CA Father in late-mid stages of Dementia |
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Kathy, I'd like to welcome you to this online community. You have found the caregiver's forum, which is full of wonderful caring people. Some are full-time caregivers, others have their loved ones in a facility, and others just come because they care about someone with dementia. You obviously care a great deal about both your parents. I can understand how you can keep your "head in the sand". I think I sort of did that for a long time.
Whatever the reason that brought you here, there is a lot of information available for you. Keep coming back. And feel free to open a new discussion if you ever had a specific question. "dj" daughter of mother with AD "Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28 |
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My name is Brittany. I am 23 years old and have been married for a year.
My grandmother has Alzheimer's Disease. She has lived in Southern Alberta (Canada) her entire life. A few days ago she moved in with my mother and step-father. They (and I) live in Salt Lake City, Utah. She will be participating in a study at the University of Utah. My mother will now be her primary care giver. I will also be a care giver. Because my grandmother lived so far away, I haven't seen her a lot since she was diagnosed 2 years ago. Today was the first day I spent time with her alone. It was hard and draining. I hope I can become better at spending time with her and caring for her. I know I will need help, as will my mother. Thanks for reading this. |
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Dear Kim,
Hello and Welcome to the AD Message Boards. I'm sorry for what brings you here but I'm glad you've found us. Sounds like you have your plate full with caregiving 2 grandparents long distance. It must be difficult. Luckily your faith will help you get through all this and so will we. Welcome to OUR family. Your NOT alone. We're here. Please, come back and tell us how you are doing. Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
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Dear Brittany,
Hello and Welcome to the AD Message Boards. I'm sorry to hear about your grandmother but I am glad you've found us. How wonderful of you to assist in the care of your grandmother! She's lucky to have a granddaughter like you. I know initially it can be difficult. Just be yourself. Perhaps make a scrapbook that you and your grandmother could look at together and share memories and good times??!! You may need to speak more slowly now so that she can process what you are saying. Don't be nervous. She's still your grandmother but her brain just functions differently now. You may want to read and learn all you can about AD. Please, call your local AD Assn for help/guidance. To locate your chapter please go to the bottom of this page and click on "Chapters" and follow the directions. Or, you can go to the top of this page and click on alz.org and find out as much as you want about AD. Again, Welcome to OUR family. You are NOT alone. We are here. I encourage you and your Mom to find and AD support group ASAP! Good luck. Please, come back and let us know how all of you are doing! Peace and Hope, Lisa check out my blog @ http://lcc-thoughtsfromtherollercoaster.blogspot.com/ |
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Brittany, I also wish to welcome you to the site. You have found a support that you will be delighted with as you travel this path with us. Please post in Caregivers forum but start a discussion (see red tab on top of box) as you will receive so many helpful supportive comments from the people on this site that are also walking in your shoes or have, and come back to share with us. This site almost feels like family because of the care given. Your conversation will not be read by as many in the getting to know you thread. Glad you are here and have a Good Thanksgiving. Sheryl In this life we cannot do great things. We can only do small things with great love. Mother Teresa |
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My name is Kurt. I am the son of a mother with Stage 1 AD. What follows is the reason I am here.
On October 20th, my father went into the hospital for routine heart valve replacement. My family and I had recently started traveling the 70 miles or so to their place for Sunday dinners as often as we could given the demands of soccer, homework, Karate, Sunday school and so forth. We wanted to have the kids spend time with their grandparents while they still had a pretty good quality of life. My kids were pretty good at keeping them on their toes. Long story short, my father had the surgery. Then, within 24 hours his BP dropped and he went Code 2. His heart was stopped for about 4 minutes. He had been in ICU since late last week when he was transferred to a LTAC rehab facility where he remains. His progress has been painfully slow although he continues to show signs of improvement. We don't really know when he'll be back or how significant his brain damage may be. During this time, my sister and I have been with my mom 24/7. We both took a week off 1in turn to keep my mother company and to make sure she took her meds and continued to eat right. We also got help from relatives and friends when we absolutely could not be there for her. My sis and I also implemented my father's medical POA and debated executing the Durable POA for financial matters given my mother's condition. The logistics of the legal and medical details alone are enough to put tremendous stress on us since before any of this happened the only thing we knew was: my parents are retired and doing 'OK' financially. It was during the quiet times, while staying with my mother that I began to think about the more emotional aspects of what is happening to my mother. That I will have to watch her fade away and become a stranger. That each time I hug her and tell her I love her that she is at the best she will ever be again. I think it is pretty unfair that we (I mean all of us living through this) have to grieve for our loved ones while they can still have Sunday dinner with us. And I'm told to enjoy the time one moment at a time; and I do for the most part. But at the same time, I cannot read the posts on this board without grieving for all of you going through this with me. And I'm still at the beginning! It helps little to have faith enough to know that I will have the strength to get through this because just the little that has been taken from her is priceless beyond words. I want it back. It is not coming back. She is precious. So my mom has this one way ticket and I'm afraid I won't be able to get to say everything I want to say before she is gone. And even more important, I cannot even contemplate a time when she doesn't know what she has meant to me as "My Mom." It just does not lend itself to understanding. And then there are the blessings. My father went into the hospital at a time when my mother is still in pretty good shape. No short term memory but if you didn't know, you might not be able to tell. I am getting to spend time with her that I would not otherwise have been able to make available (I have a job and a family and a ton of responsibilities). I am hearing stories (and its ok that its the same story I heard two minutes ago) from her youth. I am getting stories about the family's history. As my dad slowly wakes up I can see my mom and dad look at each other with such a profound and sublime love that shines so bright it blots out the tubes and machines that monitors my dad's fragile health. I have the peace that comes from knowing that the dysfunction that follows every family is simply gone. All has been forgiven; our family can hold no grudges anymore. I know my parents have good friends and have enjoyed a good life. A life well lived. Now you know why I am here. |
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Kurt, what an amazingly beautiful tribute to your parents and your family. It sounds like you have a great support group around you and your parents, and I'm finding that is vitally important.
Come post to the Caregivers forum; it seems to be the most active of the forums around here... Lynn Learning to love all over again. |
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Hi, My name is Carol. I live in Fairview, TN. I am 52 years old, married with two daughters and one 4 month old granddaughter. I am the only child of my parents, 77 and 76 yrs old. My parents moved from Little Rock, their home for the last 55 years, to Fairview so that I could help them both. They live independently in a house 3 miles from my family. My father has AD and was diagnosed about 10 years ago. He has other health issues, seizure disorder, obesity, etc. It has been an enormous process to establish new physicians for them both. Enough for now. Thanks for this opportunity.
Carol B TN |
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