Personal Stories Personal Stories
| My mom |
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| Friday, 26 December 2008 | |
 Hello everyone. My name is Kiki and I will be 58 tomorrow. I will always remember how my mom would try to make my birthday special and not an extension of Christmas. For years after I grew up she would send me a bouquet of roses every birthday. This is my first birthday without her. She died 3 months ago, in her home, on the sofa. She was 88. My mom, Helene, was always full of life and humor. She made every holiday special with her food and her decorating and her enthusiasm. My parents were divorced in the early 70's and she lived and worked in the Washington, D.C. area until she turned 70 in 1990. She flew out here to California the next day to live near my sister and me. She started going to the senior center and soon joined a group of seniors(The Merry Melody Makers) that would sing and do skits at the 2 care centers, the hospital and the senior center. She went on many trips and had fun playing cards and games. In 2000 (2 days before her 80th bithday she married Woody, also 80. They had woderful times singing, dancing and traveling. At this time she started losing her eyesight from macular degeneration. Sometime in 2004 or 2005-it's hard to pin down because it was subtle at first-she started forgetting things, then repeating herself, and getting paranoid. She said 2 ladies at the senior center told her she shouldn't be with that man (Woody). She started locking herself in the bathroom, and she would call me and tell me she couldn't live with him anymore. She even had him bring her to my place of work to say she didn't want to stay with him anymore....and she cried, alot. Through all of this Woody took care of her. He did not want to put her in the Care Center. She was able to clothe and bathe herself and she knew her way around the house but he was afraid she would be left to fend for herself at the facility and she could not see. Through all of this I came by for lunch almost everyday during the week and sometimes on weekends. I live 17 miles down the road. Last year Woody colapsed and mom had the wherewithall to call 911! He had a pacemaker put in and was home again soon. I stayed with mom until he was good to go again. A few months after that Woody had a colonectomy and complications in surgery. He was gone for 2 months so we had a health care agency in to stay with mom 24-7. When they couldn't get anyone to stay on weekends, I stayed with her. I loved my mother, but being with her all day I found myself getting angry at her. She constantly asked where her husband was and when he was coming home and he probably left her and didn't love her anymore. I put on old movies but without being able to see, she couldn't follow. I made sure I put on musicals, which was great while there was singing - we would sing along- but then she would go back to being agitated, afraid and asking questions. When I asked her about her life, she remembered being a nurse and that her father was strict. For awhile she talked about how 2 ladies came to the door and took my father away. In January my father died and when I told my mom why I was gone she just said "oh bless his heart". She did not remember who he was. Near the end, when I came for lunch, I could hear her say "is the girl coming today?" She would ask "are you my daughter?" Some days I would come in and say "hi mom, I'm your daughter, Kiki" and she would say, I know. I would always come in and kiss her and tell her I loved her and she would say the same. Everyday I would sing and dance with her when she felt up to it. I put music on everyday after lunch, it was something that calmed her and made her happy. My mom died around midnight, eight hours later I was at a Celtic Music Festival and I danced for my mom. Ever since she died I think about how we are with our loved ones who change and are not the people we once knew. How their dignity is taken away by doctors, caregivers, and even their family. It is not something we intend to do, it seems to be a reaction to someone we don't know, a stranger has inhabited the body we know. The best thing I did for my mom was continue with the humor and music that she always loved. Thankyou
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| Journey with my Mom |
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| Friday, 26 December 2008 | |
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My Mom was diagnosed in 2001 when she and my Dad were living with me and my youngest son in Boulder. A year later Mom got it into her head that she wanted her own home again, so she and my Dad moved into an independent living facility in Denver. They did ok for a couple years, then my Dad fell and broke his hip. For the next two years, it was pretty rough trying to care for them by spending one day a week with them, and the other days handling things over the phone, or rushed trips to handle emergencies. I'm the oldest of three children and got little or no help from my siblings. Finally, in 2006 I moved them into a nursing home in Boulder, and I got an apartment across the street from them. I would visit them twice a day before and after work, and if there was an emergency, I just had to walk across the street. As Mom continued to get worse, Dad was unable to help - they were married for 66 years, so Dad gave up and he passed away in August of this year. Mom can no longer walk and she cannot feed herself. I'm the only person she still recognizes. I see her every evening after work, but her vocabulary has dwindled to "I love you", "the price we pay to get old", and "la de dah" (have no idea where that came from). She's reasonably healthy for 88, and we laugh and smile a lot with the limited vocabulary. I find myself hoping she will join my Dad soon, not for my sake, but for hers. They want their ashes mixed together along with their rings and their letters from World War II, and want to be buried in the same grave with my Dad's mother. This Christmas day, I miss my Dad, but I miss my Mom too, even though I just saw her a couple of hours ago. I just heard about this site on the Hallmark show, and had to share my story. |
| Just for Laughs |
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| Monday, 22 December 2008 | |
 I'm trying to keep a record of all the day to day little things of life with my husband who will be 65 in April and was diagnosed almost 5 years ago.Here's my blog: http://alzheimersgiggles.blogspot.com/ |
| An Outsiders View |
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| Monday, 22 December 2008 | |
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My name is Matt and at one point I spent 3.5 years working in an Alzheimer’s/Long Term Care facility in Utah and I know the difficulties and pains associated with this disease. I don't know if on a personal level (dealing with a loved one) but I personally got to know some great people afflicted with Alzheimer’s and I also became close with some of their families. I used to tell new employees, "At times you are going to feel frustrated and even angry with these those dealing with dementia or Alzheimers, but what you are really frustrated with is what they are going through and your inability, at times, to feel like you are makig a difference in their lives." These sweet people didn't ask to have this disability. I even needed to remind myself that patience wasn't just a quality to possess but to practice. I’ve seen a lot of resources that help. One in particular seems to be a great benefit: http://www.thecaringspace.com As there isn't a cure yet, any source that can help those taking care of family or friends with this disease, is always beneficial. We all need to work together. |
| An Outsiders View |
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| Friday, 19 December 2008 | |
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My name is Matt and at one point I spent 3.5 years working in an Alzheimer’s/Long Term Care facility in Utah and I know the difficulties and pains associated with this disease. I don't know if on a personal level (dealing with a loved one) but I personally got to know some great people afflicted with Alzheimer’s and I also became close with some of their families. I used to tell new employees, "At times you are going to feel frustrated and even angry with these those dealing with dementia or Alzheimers, but what you are really frustrated with is what they are going through and your inability, at times, to feel like you are makig a difference in their lives." These sweet people didn't ask to have this disability. I even needed to remind myself that patience wasn't just a quality to possess but to practice. I’ve seen a lot of resources that help. One in particular seems to be a great benefit: http://www.thecaringspace.com As there isn't a cure yet, any source that can help those taking care of family or friends with this disease, is always beneficial. We all need to work together. |
| New Caregiver |
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| Sunday, 14 September 2008 | |
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I am a new caregiver. My Mother is 88 years old, 89 this month. My mother has been getting forgetful over the last 2 years. Mother has been living with me since 1989. I retired in 2001 and started my own business so I have been working from home for the last 7 years. Mother drove until about 2 years ago but I would take her where ever she would like to go. Most of her friends have passed away in the last few years. Over the last 2 years she has been getting forgetful. One thing she did everyday except Sunday was go to the mail box. I thought this was a good thing because she was walking, I live a bit off the main road. In March she fell on the way back from the mail box and one of the neighbors found her just after she fell and brought her to the house. I took her directly to the hospital. She had broken her right hip. She had both hips replaced quite a number of years ago. The break was just below where the hip replacement was. The Dr. decided to let the break heal on its own since it was, as he said, a perfect break. Mother was in the hospital for a week and then moved to a rehab center. The medication she was on at the hospital made her very upset. She was in the rehab center for 5 days and then fell and cut her head. She ended up in the hospital for another week. She then returned to the rehab center for about 6 weeks. For the week she was in the hospital and then the return to the rehab center I had CNAs stay with her 24/7. Thank God for the CNAs, I was trying to work and also go and see her everyday. I noticed that she was more confused at the rehab center and found out that she was on pain meds every 4 hours even if she had not complained about pain. I got that stopped so she only received pain meds when she was in pain. She finally came home and that has been an adventure. Her Dr. has now diagnosed her with moderated to severe Alzheimer's. She is on Namenda twice a day. She had rehab at home twice a week. Forgot to tell you that Mother is a veteran. She was an Army Nurse during WWII. She goes to the local VA outpatient clinic. She has a very nice Dr. there. I was surprised when he asked me what the VA could do for me. I told him I did not know, what could the VA do for me. He had the VA case worker called me. Mother is now going to Senior Services Day Care. It is fun getting her up in the morning but once she gets there she seems to have a good time. There are days that she does not really want to go. I usually tell her that she has rehab (the rehab goes to the Day Care now) and that usually works. The Day Care has really helped me out when I have appointments and also work. Mother is usually there for about 6 hours. I have now started going to the Gym 3 times a week. I have 2 brothers and a sister. One brother and my sister live out of state, SC and TN. My sister has come to visit a couple of times. My brother from SC came while she was in the hospital the first time. Both of them are still working. My other brother lives about 45 minutes away. He and his wife are both retired. The last time by other brother came to visit was about 2 weeks ago. I will be 53 next month. In Jan I will have my left hip replaced. I plan on have CNAs come to stay with Mother will I am in the hospital and for the 2 weeks that I am out after surgery. I mentioned to my brother that I was having surgery and when and he said that he and my sister-in-law would not be back from visiting there son in Japan. I thought to myself, what am I supposed to schedule my life around theirs.
Before Mother started going down hill I thought that if anyone would help it would be my brother that is 45 minutes away. Boy have I been disappointed. What I get from them is, You know you probably will have to find a place for her. Mother really does better at home. If she is some where else she gets really confused. I know there will probably be a time when I will have to find a place for her but I do not think that time is now.
Well I will stop for now. I am glad that a friend e-mailed me about this site. I will definitely be back.
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| My Story |
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| Tuesday, 12 August 2008 | |
 I would love to share that with each and everyone of you. I'm 20 years old...three years years ago my father asked me to do him a huge favor. THe huge favor was to watch my grandma one day while him and my grandfather (my grandmas husband) had a bussiness meeting to go to. Of course I did it. Didnt even have to think twice about it. Called into work that day and told them i would be alittle later. They didnt see it as an issue. Well the meeting was little longer than it should have been. Than both my grandpa and dad came to my grandmas house. (This normally doesnt happen) That day, my father looked into my eyes and told me that my grandma had AD (I knew there was something wrong, I could tell...Nor did i understand what this meant) I of course said YES I would watch her. Mind you all, I still was working a fulltime job and going to school fulltime (college) I did all three for about a year and half. I finally went to my family and told them i could no longer do all of what I was doing. I had to quit my job. (It was a very hard time, I loved it, love the people and loved everything about it) So needless to say its three years later and just with my grandma watching and taking care of her fulltime and than going to school at night!! |
| Kyra |
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| Tuesday, 13 May 2008 | |
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My name is Kyra and I live in Georgia. I am 39 years old - soon to be four OHHHH. I have recently moved back "home" to live with my mother (61) and step-father (74). My step-father Floyd was diagnosed with Alzheimer's/Dementia about 4 years ago (2004). I have to say I believe his memory has been slipping for much longer than before he was actually "diagnosed". I really hate to call Floyd just a step-father. He is so much more than that. He has been in my life since I was 15 and he has always treated me like his very own flesh and blood daughter. Whenever he introduces me, it is as "his daughter". It is just that I also have a great dad and feel I would be betraying my biological father by calling someone else "DAD" as well. (Floyd understand this and would never ask or expect me to feel, do, or say otherwise). Floyd has encouraged me to follow my dreams and my heart. Floyd has supported my every endeavor and if I have failed he has never viewed it or me as a failure. He has always made me feel as it all is do is great. My mom and Floyd have been going along with life as normal since this scary diagnosis of Alzheimer's. Floyd's family (brother and a sister) live in California and keep in touch as best as possible but they are getting older too and travelling is difficult. My mom's family are all in Spain (even further away). We are all close in heart but unfortunately the miles force us to be apart physically. With that said, it is just me, my mom, and my Floyd. I am single/never married. I still hold on to hope that I will be blessed one day and meet the person I will spend the rest of my life with. Up until May 2007, I was living in South Carolina. My employer decided to head in a different direction, which did not include me. I found myself without a job and feeling lost. I began thinking of all the weekends before when I would come to visit my mom and Floyd in GA and how I dreaded Sundays when I would need to make my way back to SC. I am really close with my mom and Floyd. SC was just too far away for our taste. As often as I came here to visit, they would in turn. come to stay with me. Losing my job, in my mind's eye, was God's way of guiding me back to where I really wanted to be: with my mom and my Floyd. I supposed this is my chance to actually be of some support/help for/with my mom. I moved back to GA. Found another job. Since I still own my home in SC and couldn't pick a worse time in history to try and sell it - I live with mom and Floyd. In all actuality it is still them that offer more help to me that I think I offer back. I am thrilled to be with them all the time and they often insist the feeling is mutual. I am so very fortunate to have the family I have. Here is the part where the story changes from feeling so very lucky to feeling so very frustrated and mad. I know mom and I are lucky that Floyd is extremely healthy physically. The mental decline is what is so difficult to deal with. This patient, loving, understanding, kind, caring person my step-dad was is slowing going away. It is heartbreaking to watch. I read other people's stories and don't know how they do it. I am amazed by other people's strength - I know this post will probably come off as some spoiled little child who can't deal and is just rambling away about "poor little ol' ME". I know the real heartache hasn't truly begun. I am so scared when that part comes. My mom and I have just begun our journey and we are already stumbling and having to deal with our own impatience and anger. We both know Floyd can't help what he does. We know he can't help telling us the same stories over and over and over. It pains us to watch friends pull away because they can't stand hearing the same thing repeated to them again and again. He can't help that when one of us goes out the other one has to answer the same question over and over where the other one went off to. He loves to check mail. It is something he can still do with no instruction needed. The problem with that is if we aren' t paying complete attention - then we are unable to find where he puts it. Found all the bills floating in the pool because he put them on the patio table outside and the wind blew the mail into the water. Or we find mail in the cabinet next to the canned goods or the cabinet where the drinking glasses are stored. You never know. Floyd is an excellent dog walker because he is obsessed about making sure the dogs leashes are firmly and correctly in place and he walks them SEVERAL times a day because we don't think he is remembering that he just walked them 20 - 30 minutes before. The bad part about the dogs is that he loves to feed them from the dinner table and if you don't keep an eye on Floyd, he would feed them his own entire plate. "Floyd, you just gave him a bite - don't give another". His answer, in a most indignant voice: "NO I DIDN'T". He supposedly NEVER feeds them: he only feeds them once in a while. See that makes sense, right? We have never been table scrap feeders to our dogs but at first thought to pick and choose our battles with Floyd and thought this one wasn't a big deal at the time. Now the dogs are starting to get fat (thank goodness they get the walks they get or they would be little butterballs) and one of them is getting aggressive because he knows who to pester for food. The dog is obviously rewarded for his bad behavior. The dog barks, moans, growls, and Floyd complies by giving the dog what it wants: food. And again we scold Floyd and he gets mad at us and insists he is NOT feeding the dog, dammit! Dammit from a man who used to never use curse words. I know in the big picture, this is all small stuff. Floyd is still mobile and can get around fine. His short term memory is what is the pits. His temperament is changing and can sometimes be scary when he is mad. It is scary because he has always been so very calm and even-tempered. We worry he may have tendencies toward being violent eventually. We haven't even chipped the tip of the iceburg. With that said, I hate to imagine when this journey really gets rough. I am already not doing a great job. I know that there will come a day that I will give anything to be where I am now...and where I am now, I am cursing it. What a conundrum. I am angry - there are times I lose my patience and get mad at a person that does not understand what my problem is. My only "out" is that I hope he forgets our arguements. Then I feel so guilty afterwards because I can't forget. I am seeing this as happening to me. I know this is happening to my Floyd: HE has every right to be the one who is angry, scared, frustrated: NOT ME!!!!! Thank you for creating this forum. It is helpful to read other people's posts and even more helpful to vent some of this steam that has been building up. I already feel a little bit better getting this out. Take care to all. |
| Saddness in the Golden Years |
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| Tuesday, 15 April 2008 | |
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My mother will be 85 on May 16th and my father will be 84 on May 5th....He has had ALZ for 7yrs. and my mother has been taking care of him....They have been married for 61yrs. .....She sent her license back May of 2007 and asked me to move in so I could drive her where she needed to go.....It will soon be one yr that I have been here and it has been very, very, very stressful...... She will not let anyone in to help her with my father.....He can still walk and feed himself but other than that he is toatally incompetent and has been for all of these years....He lost his language skill first......He walks around and around the house if we don't go out and he follows her everywhere....She keeps him on a schedule but is very, very, very rigid with him......It is her way or the highway if you all know what I mean.....I have gone to NH Caregivers to inquire and once cried my eyes out there, she wants nothing to do with anyone coming in...She trusts NOBODY...... She is very frail, about 105 now, still makes three meals a day, cleans etc....wants her house to look orderly all of the time, everything must be in its place.....he urinated on the carpet in the living room twice and in the bathtub etc...etc...etc.....the stress of these years with this disease is finally taking its tow on my mother.........she fell apart tonight and after being here one mth shy of a yr, she finally asked me to help get him to take his shorts off before putting on his pajama bottoms........poor guy couldn't understand at 7pm of course, didn't bother me one bit if they were still on but she went thru the ceiling......the sarcasm is sometimes so piercing that I have to block my ears......nobody knows what it's like here except for me...... I ask God to intervene......she has had 3 dizzy spells, spinal stenosis causing her legs to stiffen up at night, osteoarthritis of the thumb joint with shooting pain in her right hand, a low platelet count and honestly she has had it and doesn't mind admitting it.....It is too much for a woman of her age BUT remember my friends, she will not let anyone in.........She is very alert & reads every paper there is & keeps up on all of the worldly news....I have no say at this time if you were wondering this.....I still can't believe this is happening and I can't believe how frail she is.....my father is staying "up" because of her and she is hanging in there because of him....... Next time I will tell my story about the drug reaction he had last June to Reglan that the doctor on call ordered for the hiccups.....wait till you hear that story...thanks for listening....BYRD...my comfortable nickname since the 70's |
| Funny Mom Stories |
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| Monday, 07 April 2008 | |
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Humor is so important. I really enjoy this website. I finished moving my mom into our home this weekend. Our biggest disagreement - her huge collection of paper products and plastic forks/spons and plastic bags / zipper bags. She would shop for the same things every week for probably the last year. So I put them in two big plastic tubs and drove around with them in my car for days since my husband was at the end of his patience with this. I felt like I was one of those wives who shop and hide purchases and sneak them into house. But on Thursday she was waiting at my house's door with an annoucement that this was the perfect day to put her paper stuff away. My husband just rolled his eyes. |
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