I've been doing a lot of thinking and questioning lately. I'm wondering if you have been doing the same. I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Please post comments here. Thank you.
Very interesting blog-questions I have been asking myself. I belong to another AD group not affiliated with the AD Assoc. They were wonderful when I needed them. Gradually their focus changed to other activites. Their members' caregiving time was over but they remained on the site for the friendships developed. My feeling is that we need "outside" interests and shouldn't make AD an all consuming issue or it will eat us alive. There comes a time when we need to let go. While we are caregivers we need support and information, but there is still a world out there. When I was in crisis I totally forgot that word and almost lost my soul.
I think about this often. I am totally immersed in my husband's AD world. I wonder if I will ever be able to restart my life when this journey is over or will I be, by that time, beyond starting over. This journey is extremely hard on both the AD patient and their caregivers. The longer we caregivers are "prisoners of this disease" the more our own health will spiral downward. A strong, outgoing individual will have better success at "starting over". I am not a good roll model for that. I have my own health concerns with heart issues. It is difficult for me to make new friends and at now age 71, I don't have the energy I did a few years ago. I hope and pray for all of us.
This reminds me of the visit to the ENT dr.earlier this fall about the thyroid checkup..if that visit was taped, the majority of MY conversation would have been related to DH diagnosis and how the frustrations of getting diagnosed and driving and on and on and on..was WHY I had anxiety..forget a thyroid..my entire LIFE has been focused on DH and this disease for nearly 8 years. The poor little doctor probably though I was a hysterical maniac. I recall now, that he really didn't have much to say! (how could he?) I don't know who I've become either. I'm in 'here' somewhere but mercy, there aren't many opportunities to get out from under this umbrella I call OZ. There IS a world not completely surrounded by this and at times it feels awkward to mingle in what used to be the usual way. food for thought thanks so much
I'm guessing that we all think about this frequently. I certainly do as I am fairly "new" to the alz world. I am immersed in the paperwork and the worry and the figuring out how to best manage the future. We are moving if the house ever sells and I am currently not working although that will have to change soon as well. I find that my DH and his alz consume most of my thoughts and that I have a difficult time interacting with those who, rightly or wrongly, I feel don't 'get it'. My closest friends, who I am sure are looking out for my best interests and my mental health are constantly on my case about getting back to work. I am torn.....the time I have with my husband now, while he is still in the early stages, is precious and I am scared about missing anything as the disease progresses. The outside world seems, I don't know, foreign to me somehow at this time. On the other hand, I do not want to become isolated within this world. Best advice to myself so far is to take one step at a time. It is helpful to hear others' struggles with this!
I remember commenting one time, you can OD on ALZ. For balance, you need to step away from it from time to time & remember who you are. I have purposely determined not to discuss my home situation (for the most part) with my friends, so I can have some normal conversations about anything else. I don't have any real life connections to anyone experiencing the dementia situation, just those here on this board.
As to the future, not to worry. It will evolve. You will chose to cling to it as an identity, or you will shed your "snake skin." Whatever feels right at the time. Try not to invite problems that haven't been created yet. And if you feel a need, start by developing things in your life that have nothing to do with AD. A good New Year's resolution. :-)
During the years I cared for DH w/AD, my life was pretty much what it always was. Altho I did quit my volunteer work, family was around, we did many of the same things we always did--movies, luncheon out, day trips, shopping, watching Wheel of Fortune, etc. We were older, children grown, Except for the obvious heartache, I was OK with things. It took a long time for others to understand that 'he looks fine to me' was not the way it really was. Tears, frustrations, doctor after doctor and thoughts 'how long will I live in limbo?' 'what about the future?' 'what must he feel like?' I just muddled thru, I did not know all I know now, made mistakes, but just kept one foot in front of the other, day by day. Children & sisters were supportive, that helped.
The thing is, if it wasn't for AD attacking my DH, I found much of the brain function & disfunction fascinating. I did a lot of research, kept a journal and wrote a couple of books. Today I write a monthly AD column for a senior magazine, still find the topic fascinating altho DH has been gone 5 yrs. My life has not chanaged that much, family still around, I rent rooms to college men, write my column, have a gentleman friend but AD keeps coming up. Someone says they just got a cat, and I chime in that on one of the AD boards I monitor, the subject of pets & AD has come up--and there I am back talking about AD. In many ways AD does take us out of the day-to-day mainstream of life, but everything that happens still relates to us in one way or another--we still have more or less 'normal' lives--just more complex and too often isolated. People talk about cooking, gardening, travel--I write and talk about AD. I'm sure that many caregivers never want to mention the words again after their LO leaves, that's perfectly OK.
As for 'me,' I remember, as a child, knowing exactly who I was. It had nothing to do with my career, hobbies, whatever, I just had a strong sense of self and, fortunately, my parents let that be. Oh, yes, I knew I was a daughter, aunt, wife, mother, writer, secretary, volunteer, etc, but whatever I did, I knew who I was when I was doing it. I think most people feel that way, but AD overwhelms your life and sense of self, no question about that. Some, like Joan, may continue with AD as I have done, I know others who write & maintain websites about AD altho they are no longer caregivers. It's like we have all this infor an experience and we need to share it, but it's not all that consuming & isolating now, we do other things, too. It's all OK. Along with other things, I now think of myself as a writer, and when people ask what I write about, I say 'Alzheimer's' but it could just as easily be about anything.
Joan, your main focus may be Alzheimer's right now but along with that you have learned to handle a website, done some marketing, research and had all kinds of practice writing and speaking. In other words, you have expanded on what you knew, grown in areas new to you and added a wealth of knowledge to yourself and had to push yourself way outside of your comfort zone many times.
A friend of mine told me early in this journey to try and do something for myself at least once a week and that would help. I have tried to do that and it really helped me. Sometimes all I can do is a little bit but at least it is something.
I have lost touch with a lot of my friends or sight of some of the major events going on in their lives but the ones that are left have been real gems. Sometimes I play a game with myself when I am with them. Every time the disucssion goes around to AD (as it all too often does), I try and make the answer brief and then ask them a question or two about themselves and their interests. It wasn't easy to do this at first but the more I do, the richer and more rewarding the conversations get.
Who am I outside of the dementia world? Boy, that’s a question that could keep me up at night for some time to come. It’s one of the things that I want to work on when I have my “caregiver rebellion” during the next two weeks. I’ve sort of refused to admit—obvious though it is--that I’ve become nothing but a caregiver, a medical negotiator, a finance investigator, a chauffeur, and a medical researcher. I feel like I’ve given up my whole life to be here for my husband. I feel that way because I have given up my whole life to be a caregiver. I still want to take care of DH, but I am no longer willing for that to be my entire life. It can’t continue to consume all of my life, because I need to be able to go on after he is gone.
One of my major resolutions for 2009 is to rediscover “me”, to try to find out what I want the rest of my life to be. I was 52 when I became a caregiver, nearly six years ago. I’m hoping that there is some decent small part of my life waiting for me when this is over. But every time I think about, or talk about, anything after this disease, I feel like my husband is walking toward a precipice, and I am walking behind him, pushing him closer and closer. I need to quit feeling like that. It’s the disease that’s pushing him closer to the edge, not me. And I need to think about how I am going to continue living when he is no longer with me, or I may go over that edge, too.
I know that my husband loves me, and he would want more for me than to entirely lose myself in this disease that is slowly consuming him. It’s just that day by day things get a little more complicated and a little more involved, and I wind up with no mental or physical energy to reclaim my life. But since I have this fear that when I lose my husband, I will just sit down one day and never get up again, I need to start making plans and taking action now.
(Reading this over, it sounds a lot like whistling in the dark—like maybe if I make enough noise the scary things won’t get me. But I think I’ll need to whistle a lot louder to make all these scary things run away.)
A few months ago, when I could not sleep, I wrote an e-mail to my grown children about my fears that I would die before their Dad. They all assured me they would look after him. My problem was and is my fear that this is all there is, the world of AD. At this point, the disease is harder on me than on him. He sleeps well, sits around all day, making sure I am in his line of vision. I do everything. Bills, banking, investing, cleaning, planning,laundry, cooking, etc. It is exhausting. For now, he seems adjusted to the disease. I know he could be worse, and most likely will be. I plan his doctor, dentist, medications, experimental drug visits, drive him everywhere. What about me? I cannot go anywhere social without him. I occasionally have lunch with a friend. I need more.
As I told my husband tonight when I tucked him in, I never promised you a rose garden. He's been hurting from his arthritis in one knee quite a lot and it's making him hard to deal with. He's very frustrated. On days like today, AZ is all there is. Well, that, and a little Christmas shopping on line, and buying some cookie-making suppies for tomorrow when there's supposed to be a snowstorm.
I have made the choice to do outside things. When the CNA comes once a week, I spend my freed up time at the zoo, where I'm a docent (and like all the others anxiously awaiting the birth of a couple of baby giraffes! I'll keep you posted!) And I'm membership chair and on the governance board of a local land trust, and still involved with the land trust on the Maine island I go to in the summer. I'm good at databases, so I keep track of the ones for these groups plus another one; all this can be done at home while he sits quietly, or watches operas. THe post office is nearby and friendly, so it doesn't take much time to deliver a mailing.I still do a fair amount of web design/maintenance work for these groups and a couple of others.
Since my husband cannot dress or undress himself without coaching and since his arthritis makes him move very slowly, I count that I spent at least a couple of hours in the morning getting him up, moving, dressed and fed, and another couple reversing the procedure at night.
I am, of course, bored out of my skull. I was listening to an NPR program today with Tom Ashbrook interviewing cookbook authors who write about eating in exotic places, and reconstruct the recipes. Oh, how homesick it make me for the places they were talking about.. But at least I HAD those experiences, and I HAVE STILL those memories. I feel most sympathy for those of you who haven't had time to really get out and enjoy life.
I call the state I am in The Alzheiner's Tunnel. The reason, and I know you will agree, is that this disease pulls you into it even though you don't want to go there. It whirls you around and sucks you down the tunnel along with everything in your life. I dream of another life and want it back badly. I am used to running a business and am mentally organized. I want to have an in depth conversation and be understood. Spending the days wondering when this will end and hoping that I can outlast it to come up for air and light from the tunnel. Of course, no one else wants to hear this. But, you dear friends, know and understand. No, I don't know who I am right now. Numb, that's what I feel. I hope that I will even like who I will become. May God help us all.
My husband passed away in March of AD. I pop in tonight to read the blog and see how everyone was haddling the Holidays. This is my first alone. What am I after AD? I sometimes miss my support groups. I decided to take the first year away from AD to care for myself. I am thinking a volunteering at a local Daycare run by a community hospice. In late March I am going with a girlfriend to Tuscany, Italy, for 9 days. She also was a caregiver to her husband who died of Melanoma in May. I still sleep a lot, I guess I had missed sleep. Yes, I am enjoying and finding life after AD. I am finding myself and taking it slowly.
Happy Holidays to you all. My thoughts and prayers are with you all.
my husband passed a month ago yesterday. Who am I??? good question . I've been a care giver , a Mom a preschool teacher and now I just me for the first time in my life it is just me. I'm going to go back to work after the first of the year. I've work for 25 years as a techer and this last 4 months is the longest I've ever had off. So I guess the question is still Who am I??? I will start anew life ,But when someone asks "how are you" you still go back to the dreadful disease it will haunt you forever because it is ingrained in you . I pray there is an answer very soon so alot of our families will not have to go through this .
Who am I after more than 10 years of caregiving? The same person I was...only a new and improved model. I am more patient, more tolerant and someone who values each day more than I ever thought that I would.
When my husband died in March it was if a huge weight was lifted from our family. It was not that my children and I did not care about or love my husband and their father, but he had been "gone" for a long, long time. By the time he died at home after five years of being firmly in Stage 7 of this terminal illness, we were more than ready for him to transition to a better place. I managed to keep "myself" during this time.....was it always easy? No! Was it always necessary? Yes! It involves making tough decisions about getting in home care, making day care arrangements and eventually placement in a proper facility. My family and friends questioned my sanity when I brought my husband back home three years ago. He was easy to care for by that time and it just seemed right. But, I had to promise them and myself that I would not be consumed by the everyday caregiving. I hired good help, I traveled, I shopped, I lunched with friends, I went to movies...in other words, I took care of myself, too.
I will admit that in 2001 and 2002, I wasn't sure I would survive the insanity that surrounded me....but then I looked into the face of my little grandson and wanted to be a part of his life. I had to make a choice....would I let two people go down because of EOAD? Nope....I couldn't save my husband, but I could save myself. In retrospect, a little selfishness on my part was a good thing.
My best wishes go out to all of you.....and I wish for you a peaceful and love filled holiday season. Make time for yourself, enjoy a bit of the holiday madness around you and remember that you are important, too.....
Is there another world out there somewhere?? I am so emotionally and physically tired that I am not even doing a very good job taking care of my husband, all I do is go to work and come home and work, doing what all the rest of you do. I know I would be better if I had some life outside but not sure how to do that without feeling guilty, if I am gone he thinks I am out with all my boyfriends and gets angry, most of my friends do not really understand and how could they. I feel more like a mom that needs to care for her child and we are supposed to put our children first or are we? I do not know who I am anymore other than a caregiver.
MMarshall, I could SO identify with your post! I am used to running a business, and even though it's gone (all except the creditors!), I still take note of suitable properties available for lease, and what's going on in the venture capital world, and new tax laws and employment regs, and new technology trends, and what symposia are coming up and who will be speaking... and for what? I never wanted to be an entrepreneur, it just sort of evolved, but that's what I became, and now I'm like an old war horse pawing at the ground and wanting to charge. But I can't look for a new job like that, it's too time- and energy-consuming while my husband still needs me. And probably by the time he is gone, I will be viewed as having been out of the technical scene too long for anyone to be interested. Nuts.
Iowawife, I am so sorry for your pain. Sometimes you have to put yourself FIRST in order to survive the insanity around you. Take care of you and feel no guilt - I know, easier said than done - but so true!
Sunshyne, you still are very good at what you do and I'm sure you are doing a great job of taking care of your husband. Just keep your fingers in that other world pie and when the time comes, you'll be ready to re-enter that "other" world.
I had figured out that I needed to have some things FOR ME by the time I came here. I am also working out that I'm not a very social person, and my lack of socializing isn't all the fault of my LO. Some of it is just me. <grin>
So far the things I do for me is lots of forums, mostly this one. And digital scrapbooking. And I've been looking at crochet and knitting magazines. And sewing machines. Haven't done anything about anything except the digital scrapbooking, but I might.
I've been saying yes to attempts by my neighbors to give me some respite, and even access to social events.
But right now, I'm not doing all that much for me.
I could have written exactly what maryd wrote. I do everything..pay bills, banking, investing, cleaning, cooking, laundry, plan his doctor, dentist, therapy visits, drive him everywhere, do his medications, etc. If I go anywhere without him, I keep calling to make sure he's all right. I do have lunch with a friend occasionally but, like maryd, I need more. But how? I'm only 3 years younger than he is so I also have the fear that I will go before he does or become unable to care for him.
Right now my husband is an early stage 6. He has stage 6 cognitive and speech symptoms, but not the physical ones. That means that having someone come and sit with him will not work. Right now he is still doing 1 and 2 hour walks. He isn't doing them every day because of the weather. But yesterday he was out shoveling in the freezing rain, and right now he is removing ice from our walkway. We live in a community with snow shoveling as one of the services, so none of that is necessary, but he is still doing it.
So HOW do I actually make plans to do something I would enjoy without him? I can't leave him for more than an hour or two, but he can leave me for that long as well. There is no such thing as making a plan to do something without wondering if I'm actually able to do it. So far when my neighbors have planned something out it has worked out because someone came into the house and convinced him to go with them. But I have no idea if it will work come January when this stuff will start up again.
And that is part of the problem for all of us. It takes so much work to go out for an hour or two alone. It is easier to just not do it. And then we realize we haven't spoken to another person or had an intelligent conversation in days or weeks. Not good. Not healthy.
MMarshall has it nailed - except I call it the Alzheimer's Abyss, tunnels have an end. I think your identity depends on the many variables - first being the stage your LO is in. I think that Stage 6 has to be the worst (they don't call me Einstein for nothin'), at Stage 7 they're probably in a care facility. Right now, we're in early stage 6 (age 58). If your LO is at Stage 2-4 and you don't have a good plan/support network for the future, do it now!! You won't believe how bad things become in the later stages and how quickly your LO can get there.
MMarshall, I may have missed your introductory post. Are you dealing with EOAD?
Take this for quick. My husband had his event on December 18, 2003. Exactly 5 years ago. If he also has Alzheimer's he was at no more than stage 2 at that point, which basically means, normal.
Starling, have you noted any acceleration in the progression/history of his disease? Our time from 4 to 6 was a lot shorter than 2 to 4. She started in 2002-2003. Why do they even have a Stage 1 (we're all at that level)?
Iggy, I don't understand stage 1 either. But basically you got it. It is the baseline - normal.
My husband was diagnosed at what I think was stage 5. The diagnosis was made in May 2007, so about 18 months ago or a bit more. His dementia was evet driven. Basically he kept dying and they kept bringing him back. If he had died during the accident, that would have been that, but he probably just passed out that time.
There was also a very long (9 hour) 6 bypass operation in 1991 or 1992. I loose track. And that also might have resulted in enough brain damage for the very early symptoms I think existed between January 1992 and December 2003 (when the event happened).
And there also might be Alzheimer's. A lot of people with vascular dementia have Alzheimer's as well. And there is no way to tell.
It is one of the reasons I say that for the most part it just does not matter why they get dementia unless they have one of the ones where you should not give them certain medication, or if they have one of the ones where the dementia can actually be reversed. Once they have made sure that it isn't one of those two kinds, it just does not matter why.
Who am I outside the Dememtia world? While thinking about this subject, I received a news letter from Mayoclinic.com. They have a Dementia discussion with the news letter. I found a poem written by Anne Simpson, a caregiver for her husband. It touched my heart and realized it takes time to find who you are with this disease. To read the poem, go to: www.mayoclinic.com/health/caregivers/MY00412 I sometimes feel like I am moving on, but it is a slow process. My husband is in the late stages of Alzheimer's and is in a care facility.
Mary D & Dazed--same here. I think he's in stage 5 but not really sure where in stage 5. He can talk but I don't think he can read much any more. He can't follow a TV program or a movie. No conversation. He doesn't shave or shower unless I remind him. I monitor all his meds, pay the bills, take out the garbage and recycling every week, gather the garbage and waste every day. Do all the shopping, appointments, etc. I'm 5 years younger than he is. My biggest fear is that I will die before he does. That may sound negative, but that's the way I feel. I've made sure our wills and POA's are up to date, funerals and last expenses are all prepaid. Just finishing up a remodel project that's been in the works off and on since last March. Im in the process now of making out a to-do list for 2009.
However, I have made some plans just for me. I'm going to be teaching a 4-week class in January. Giving an hour long seminar in February. Taking a 3-week trip to Missouri for Easter and teaching a 10 week course after Easter. That's pretty good for starters. That takes me up to June and I'll worry about the rest of the year after that. :)
I guess I take good care of me. I do feel kind of guilty and selfish but talk myself out of it fairly fast. I just hope I'm doing the right thing. I can see where a person could really go nuts if they dwelt too much on AD. I did that when it was first diagnosed and then after I came here, I was able to adjust and accept it. It is what it is.
This is not an easy journey. He doesn't want to go to the store with me any more. Doesn't want to go for a walk. He will play cards but no other games. It's lonely here. But I don't feel I can complain. However, I have gained a lot of weight--almost 30 lbs since last spring. Physically, I feel heavy, loggy, no energy. Emotionally, I think I'm ok. I need to zero in on this weight gain and discipline myself to do exercising here in the house.
I think you'd find that most of us fear dying before our LO - it has always been my biggest fear. I stopped going to the gym in May due to her behavior - she is a classic sundowner. I think we end up with behaviors (lack of exercise/poor eating habits/smoking) that certainly increase our risk of checking out early.
This is a tough balancing act--it is tempting to get sucked into the AD world full time, but I'm fighting like crazy to maintain some of my "old life". The main way that I'm doing it is trying to maintain and educate my friends from outside of the AD community. It is another "job" to add to the list, but I think it's worth it. I just don't want to have to start from square one when my husband passes away someday, without friends or interests to sustain me.
The best advice I have recieved so far was from my lovely councellor.She told me whatever you do make sure you have a life outside of this disease.For the last 8 months since my hubby's diagnosis I have stuggled to maintain this "outside life" but boy was I glad I did it because if I didnt I dont know how I would be coping now.At first I would tell my husband everything I was doing going for coffee, going shopping with a friend having a cuppa with the "girls" & that was fine at first he seemed to understand that once a week I needed my time out but a couple of months later that didnt work anymore.He would take his anger out on the children while i wasnt home or get them to ring me 10 - 15 times in 30 mins to find out when I was coming home. I would get abusive messages accused of talking sh@% with everyone told i was a bad mother for leaving my kids for hours on end (WHEN IT WAS ONLY 2 HRS MAX) but the minute I hit the door he was happy again as if nothing had happened.So now I tell him i'm at work he is fine with that because thats always been the routine I let my kids know where i am & they tell him i'm at work for a couple of hours.Thank god for my job it keeps me sane 2 days a week & its my excuse to have time out as well.I know that cant be used for everyone as some of you lovely people do the caring full time, but if you make a life for yourself now it will be so much easier later down the track.I know its easy for me to say my husband is middle stages i'm 39 young & active but I just think as long as you have an interest no matter wether its associated with AD or not it keeps you moving forward and that is so important.
Marilyn, hi, and welcome to Spouse. We know your age (this must be the only place in the world where the first thing we know is a woman's age!) and your husband's. Tell us more about you. We had a thread on what our spouses were before AD, I think I'll try to find that and bring it to the top. And what about you ... what was your "old life" like? What are your interests? (Do you have cats???)
Thanks for the welcome Sunshyne. Well, here's my story. Steve and I were married 31 years ago--second marriage for both. I have no children, Steve has a daughter from a prior marriage. My story is a little unique because I knew Steve might have AD someday from day one. This is because his Dad was exhibiting symptoms of dementia in his 40's and was institutionalized in his 50's. This made an indelible mark on Steve's psyche and although he didn't live in fear of inheriting it, he did everything he could to prepare in case this was his fate. Sadly, it was. He was diagnosed with MCI at age 59.
I was a career Federal government employee and retired early 10 years ago, partially to take care of my parents. My Mom died a year before Steve stopped workiing (he was a CPA); my Dad is still with us and lives in an assisted living facility (he is 94). Until December 2007, he was living independently and I was his main caregiver--taking him grocery shopping, to banks, get haircuts, to the doctor and dentist, etc. So I was juggling caring for both Steve and my Dad at the same time.
Steve and I have always had a very special relationship--we are soulmates. Even with a wonderful marriage, AD has been the challenge of my life. Like one of Joan's blogs, I had a complete misunderstanding of what living with an AD spouse would be. Over the years, I imagined that if he got AD, Steve would still be the same sweet, loving man, just with a lousy memory. HAH! I always said to myself that if he came down with AD, I would never move him to a facility. Well, reality has changed my mind--and Steve himself even told me early on--that he doesn't want me to kill myself taking care of him. Most of the time Steve is still the wonderful man he always has been--and over time I have learned to accept the situation and also how to motivate him and deal with the behaviors.
My interests--well, I struggle to find the time for myself. I like to work out, shop, decorate our home, meet friends for lunch, go to movies, museums, theater, travel, go to restaurants, read for pleasure. No cats--I love them, but I'm allergic. I do a lot of Alzheimer's advocacy work--the first thing I was asked to do was to testify before a Senate subcommittee to get more funding (YIKES). It was intimidating, for sure, speaking before about 400 people and being filmed for CSPAN and there was unexpected publicity. But the hardest part was publicly speaking about what this terrible disease was doing to Steve's life and my own. I think you call that a baptism by fire? So after that--the speeches and panel discussions have been less scary. I also cofacilitate a community spouse support group with a social worker from the Alzheimer's Association. I look at this volunteer work as my "job"--Alzheimer's--the caregiving and the advocacy--is my second career. It is easier to accept for me that way--until I changed my outlook, I had a lot of resentment that my retirement years had to be spent this way. I also spend a lot of time doing research--clinical trials, how to modify our home to support Steve's needs, anything and everything that will possibly help him.
Welcome Marilyn! glad you joined in the family here. its an unusual group of very savvy persons where there is always a helping hand and listening ear. a very good discription of early AD dx--that is exactly what alot of persons including me, thought AD was, a disease where my dear sweet husband would continue to be his darling wonderful self just with memory troubles... how wrong we were..Divvi
If you believe those wonderful Aricept commercials, that lead people to believe, Just memory problems. And as soon as you take this medication all your problems are solved. If they would put on T.V. what really happens to someone & their caregiver when dealing with dementia and the ages that it can occur...not just Grandpa & Grandma. Maybe more would contribute to research for a cure.
Well, the drug co. wants to sell their pills, so they'll say whatever helps them to do so. Has anyone seen the movie from a few years ago with Julie Christie called "Away From Her". It's about a couple--the wife has AD--and she voluntarily moved out of their home into an assisted living facility! It was well acted, but that's a far cry from reality. I think that actually, the well spouse is much more likely to want to check in somewhere (joking). But it gave the public the impression that AD victims are rational beings, able to make a major decision on their own.
I just spent time in New York City visiting my son. I was around a bunch of normal people. I met my son's girlfriend's parents and her brother & sister-in-law. We had an evening filled with laughter & story telling. I was really on a high. You know when you are having fun. The time spent there, even up to meeting people in the airport, was such a joy. I have to say, it was hard coming home.
Oh Kitty your visit with your Son sounds just so perfect ..... I'm so happy you were able to do this and enjoy some normalcy, albeit for just a little while.
It's been more than 5 years since I've had even 5 minutes without my husband by my side ....... even going to the bathroom is not done alone :( Although our Son does come regularly and helps out a great deal with his Dad there is still just NO ME TIME and I'm about to burst wide open. I've applied for some respite time but am on a 5-6 month waiting list for a Day Care space ..... just holding my breath and hoping this time will pass quickly.
On the upside of our situation ........ my husband is really a nice person to be around, he is not crabby, not agitated, doesn't get mad or out of sorts, makes no demands, doesn't wander, doesn't complain about anything, eats everything I prepare, is most agreeable and makes it easy for me looking after ALL his personal needs right down to picking food out of his teeth for him .......... sooooooooooo, what am I complaining about?? (shaking my head) Some days I think I must just be a selfish bitch but I'd really like to have occasional conversations where "Alzheimers Disease" is NOT even mentioned :(
YES Nikki ! ....... life is definitely there to live and 41 is certainly far too young to totally stop living. I personally would enjoy company but can guarantee that I'd NEVER again put myself into a care giving situation ..... twice is enough!
That woman at the airport (in the Aricept commercial) just drives me nuts! That supercilious look on her face. And her saying "I knew something had to be done." Am I being picky? Probably so! It's 11:51. 9 minutes to go until 2009.
No you are not being picky. At the point where her LO doesn't remember his grandchild's name she wouldn't be traveling, and it wouldn't be a surprise either. ...[sigh]...
I can't stand the bowling alley one either. By the time someone starts wandering, you aren't socializing anymore.
Those Aricept commercials are amazingly both hokey and condescending at the same time. Hey Gramps, take the "magic pill" and you'll never confuse the names of your 15 grandchildren again. My dear grandmother would go through all the male names in our family and, at some point, would hit the right one (mine) - thank heavens we never thought to take her to the neurologist. Now I'm doing the same damn thing with my kid's names.
It's good to know I'm not alone. Since my husband's situation escalated in early August, all I've been able to do is associated with his FTD -fight the medical facilities which are providing lousy care, the insurance co who refuses to cover the hospital stays because "he has a chronic illness that can be handled in a long term care facility, not an accute facility", visiting each day to make sure he was being taken care of, paying bills, searching for "appropriate facilities" who will accept him due to his behaviors, doctors appointments, etc. About a month ago my sister said "you know, Rich and his illness have become your primary job". Until she mentioned it, I hadn't really thought of it that way, but she's right. Right now he's finally been released from the hospital and is now home. All I want to do right now is soak in his presence and personality and the remants of the man I married while he stills knows me and can verbalize his feelings and love for me. I know all too soon he will move to a different stage. Even though I tell myself "You are prepared for that" I know the ensuing "small deaths" in his memory and functions will be devastating.
Happy New Year to all and let's hope for a major break through in 2009 in treating the dementia diseases!
Well, Iggy--I have 5 kids and 10 grandchildren plus their spouses and I can NEVER hit the right name the first time and as far as I know I don't have AD. One year everyone put name tags on. They all think it's pretty funny. I have just started calling them "hey, you.'
Fun stuff.
And as far as the Aricept commercials, that bowling alley one is beyone the pale. Who dreams these things up? I think I should get myself a job in marketing but doubt if they'd hire me. I'd tell it like it is. It SLOWS the progress. Doesn't stop it or cure it.
Kitty I am so glad you had such a wonder visit! Me time I think is going to be something I truly love :)
Bar-bra, I could just wrap you in a hug right now. Just because he is mild mannered, does not make the challenges go away! As LFL said it IS a full time job!!! You are certainly NOT selfish, two times a care giver... not sure I could or would do that! bless all of you who are.
I wont even comment on those Ads...grrrrrrrrrrrrrrrrrrrrrrrrr
Sorry I did not respond right away to your question about what I was dealing with. DH was dx'd with AD late Nov. 2007. I would say around stage 4-5. Then updated to FTD after a PET scan w/dye and neuropsycological testing. Of course his upsetting behavior gave us a huge clue! He is declining rapidly since this past summer, solidly in early stage 6. The Alzheimer's Tunnel/Abyss, you know, don't you. I want to come up for air so bad sometimes. Me time? Not! I can't go anyware, do anything without DH on my tail. Can't even take a 5 minute shower without him wanting something or doing something that needs tending to. Agitated, pacing, figiting, sleepless...I hate to think of what it would be like if he wasn't on his meds. I can't even have a conversation with him, he is so confused about everything. I give up and go quiet. It's lonley. I do want out of this tunnel as I am worn out, tired and frustrated. And you know what? He even goes to day care three days a week. I can get some errands done but.....then it is time for me to take over again at the worst time of the day for him, sundowning!
Please excuse me, I did not mean to vent here. Who am I? You tell me. ;-)