I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. As always, I am wondering if any of you are experiencing the same feelings and desires as I am.
Joan, surely another person in your support group feels this way also? You may have someone right there who would like to do as you say you would - get together and leave AD at home.
I don't have a close friend that I do things with, but I do have friends who call and e-mail and we TALK about other things. On Sunday mornings, we usually go to breakfast with a small group of long time friends. The men sit at one table, women at another. The men take care of DH and I don't have to worry about him. The women talk about whatever - NOT AD. But....I find myself not being able to join very much in the conversation because my whole week has been AD! But, it is good to listen to them.
I don't have and never had a large group of friends. It was always one close friend and maybe a couple of "part timers". I wouldn't know how to find with a group of "normal" women!
We have several friends who have not left us. We don't talk about AD. We talk about all the other things that matter in our life and things that are going on in the world. I guess at times when Gord is not with us, I bring them up to date on what is happening but I never want people to stay away because they think I am complaining.
As for a group of "normal" women......we are here! Well, maybe not completely normal but sort of.
Joan, I feel the same way! Whenever you find a way to do this let me know because I can be in the middle of a sea of people and not have anyone to talk to or do anything with. The closest I got to it was my friend that has been showing concern for me and what is going on with me but even then it seems like whenever we get together we have got to talk about it. Even when I say to myself "I AM NOT GOING TO TALK ABOUT IT" I talk about it.
Joan--I am in the opposite situation from you. All friends (except for one from the Alz Assn) are non-AD. Here's the dilemma: when you are doing dementia caregiving 24/7, it's pretty hard to come up with non-AD conversation. The things you used to talk about (insert: travel, hobbies, books, movies, plays, the news, etc.)are probably not a part of your life very much anymore due to lack of time and energy. Even TV viewing can be restricted when you have to watch programs that are of interest to an AD spouse. So I have found what happens is--my part of the conversation is bringing them up-to-date on what's happening with my life (caregiving); their part of the conversation is telling me about their "real" lives--all the things I listed above. So, actually, I don't see how it would be possible to find what you're looking for while doing F/T caregiving--friends to socialize with and not have the AD topic arise. Whether we like it or not, this is what our lives consist of at this point. Perhaps after placement occurs, that changes to some degree.
NONE of my friends are dealing with AD. Right here is the only support group I have. DH is at a stage where I don't feel comfortable leaving him alone for very long but not bad enough yet to get a sitter. We still go out a lot with friends or family and we talk about everything but AD. Occasionally one of them will ask how he is or how I am dealing with it but I NEED to talk about AD. Just don't want to do it with other people who are not dealing with it. A group like your's would be a Godsend for me, Joan, although I'm sure I wouldn't want to give up the other.
How true is all of this. Just today I told the doctor at the neuro appt with DH, that there are days I am up against the wall..he said the word is Respite..yeah sure youbetcha...we all know we need it but getting it is not always so easy especially when the LO can be left alone while we do the errands. He suggested moving to assisted living where dH could be in the ALZ wing and I in the other side..I said NO and he looked at me like I was nuts not to see the advantage of this. I said for as tired as I get and frustrated at the situation, as long has he knows where he is and this is our house and he keeps commenting on it being the first house we own outright and enjoys all our treasures, he is not going anywhere...the doctor said, "you are right..yes absolutely right and I agree"..What doc didn't know is that care sitters get a min of 22 bucks an hour...So for now...things are what they are.
And I am like so many here with just one or two friends who have really busy family lives but do at least call now and then. It is a lonely road we travel.
I am however on the other end of Joan's picture. No Alz friends, but now I have all of you :) I am truly blessed, I have two girlfriends since I was 13 years old (43 years of friendship). We talk everyother day, they are holding my hands as best they can thru this, they live out of my area and are a great comfort, but they are not walking this path. Once we talk on how he's doing we move on to, other family, politics and hair color. My world is isolated from any support groups and to be honest I don't want to be the learning curve in this area where I live. My work place doesn't even know who, why or how my husband retired so early. I "hate" the poor you look, hate it, hate it, hate it. Want to turn around and say "you think you can't get this disease" .....idiots !!!! I think it can be hard to find friends when our lives become so focused in this one area and we are just trying to survive. I think finding something you like or are interested in and then finding groups or functions to attend. That sounds like a job with unknown return. Today Mimi I meet with one of those agency's but mine's $25 an hour. I will be paying more than I make an hour. But hubbie needs more care while I am at work, no choice ...............it is a lonely road
Living and working in the RV world is my touch of the outside life. I love talking with people about our mutual travels and experiences. A couple just left from WV who were on their way home from Alaska. They share their stories - sites and experiences of the trip up and back including going through customs. Then I got to share some RV parks on their trip home that we had stayed at.
Art enjoys the conversations too since he can remember the travels we did. If Art talks to people alone he will tell them about his diagnosis, his feelings about it and also me. I told him he needs to stop it - I am the one he needs to be telling since I need to know where his thinking and feelings are at. He got angry about it but said he would not share anymore with anyone. He may stop but it will not change what he shares with me - he still will not tell me. That is nothing new - the last 40 years have been that way.
WE have a group of friends that have dinner once a week and breakfast too. The guys watch DH while the women chat. When I do get away I try to make time to just sit with a friend and have lunch or talk about "normal" things although AD always sneaks into the conversation. I find myself getting "overdosed" in AD at times and have to step back and stay off or limit my time on this site and the FB site. It begins to consume me. I took 4 days respite with a friend but find that that is not long enough. You need a couple of weeks. A minute after I came home I felt like I had never left.
Phil 4:13, I only get a few hours of respite here & there (not a complaint) but what I have realized about respite from my own experience & from comments like yours is that (& I hope this makes sense) respite lasts only as long as you are gone. I was hoping that even being away for a few hours would help me feel refreshed & better to deal with things, but not so (at least for me). The minute I walk through the door it hits me like a slap in the face even when DH is in a good mood. Maybe it’s just me, but that is how I feel. As far as friends; none of the people we considered friends are dealing with this & I know that they just don’t know how to deal with DH. If by chance I run into someone they always ask how we are doing, so I just tell them as well as can be expected.
ElaineH, I feel exactly the same. Nice to get away for a few hours to get things done or meet friends, but as soon as you walk in the door it is back to reality.
Any way you look at it, it is entrapment. Sometimes I have the feeling I am just trapped in a situation over which I have no control. Other times I manage okay. I treasure my two hours of church on Sunday as dh won't go with me anymore. I keep asking but he refuses. I can't go in the winter because I don't drive on bad roads. Then I have 3 hours to call mine in the middle of the week when I get my hair done. It is rare I have any other respite.
I was talking to an AD friend yesterday, and we decided to go out when we can and do something fun and talk about anything but AD. We figured we could leave our husbands at home together watching a movie on TV. At one time, we could drop them off together at a movie theater, but we can't do that anymore due to their physical and mental declines.
Although I am lucky to have friends with whom to socialize, I live SURROUNDED by 90 year olds, 80% of whom have dementia. YIKES! The move to the Independent Villas was necessary for the help I get, but everyone is 25-30 years older than me, and those in the ALF next door are mostly in walkers, wheelchairs, and have some form of dementia. Including my father.
I'm 63 years old, and have been living with AD for almost 9 years. The first 3 of those years, I didn't know what was wrong with my husband.
Girls just wanna have fun, and this girl is one of them!
Joan--I understand why you moved there, but your comments are why I never considered moving to a retirement community for one second! It was enough to visit my Dad and his ALF and NH and then come home to take care of Steve. I already feel we have been fast-forwarded past part of my 50's, beyond our 60's,and 70's into our 80's/90's. I would not want to live surrounded by it.
I was primed to respond to Joan's post above but see that Marilyn took the words out of my mouth. I have been looking at ALFs in three different states since March. Although my DH is only 10 years older than me lately when I have taken him to the doctor or to a senior center on our recent trip people who don't already know our relationship refer to him as my father. "Do you think your father will like this?" and so on. If they don't need to know I don't correct them because when I did once the person was so mortified.
I've been trying to think outside the box lately and explore all options. One of those was the possibility of both of us moving to an Independent/Assisted Living place. But my thoughts are just like Marilyn's. I feel like I lost nearlty decade and just turned 60 without really experiencing my 50s. My fear about myself living as Joan describes is that it will truly feel like the end.
As for non AD friends, I too yearn for AD friends and support groups of which there are none here. I've pulled back so much in the past several months with hopes of moving away that I'm feeling the absence of friends in general. I went to lunch with a woman the other day I used to spend a lot of time with over the past 3 years and she said, "I was telling the bookgroup the other day how much I miss the old Terry." Then she added, "Before you were as burdened as you are now." Me too. Me too. And she met me after the DX when I already felt I wasn't the "old me" which just shows how much of a decline there has been in me along with DH. We're both declining.
It was my decision to trade living with younger people for the services and conveniences I get, and I do not regret it. I do not have the resources to hire in home help; in home sitters; repairmen; yard workers; cleaning people; handymen. That is why I moved here. My monthly rent takes care of all of it, except in home sitters, but in an emergency, I can always send Sid over to the ALF, and they'll keep an eye on him. I don't have to listen to a smoke alarm chirp for 3 days wondering who is going to get on the ladder to change it. I don't have to sit in the dark if a bunch of light bulbs go out, because neither of us can get on a ladder to change them. The roof leaked; the air conditioner broke. One call to the front desk of the ALF next door, and someone was here in 10 minutes. However, if I didn't have friends outside of where I live, I would truly go nuts, but I do have friends within my age range, give or take 5 -8 years. So it's just a matter of those friends and I making time and commitment to do NON Alzheimer activities and have NON Alzheimer conversations.
I have an AD spouse friend who is a retired educator like me. It's fun to trade war stories. Lots of laughs.
Please do find a way to build friendships with non-AD people, Joan, it will surely help your well-being. I am blessed with a great group of long-time friends who are most understanding and supportive and we do NOT discuss DH's condition except in the casual manner we discuss things regarding their spouses. They have been with me every step of the way and learned more than they ever wanted to know about dementia along with me. Luckily, so far, I am the only one with a spouse suffering from this dread ailment.
I do not have any AD friends except for some marvelous ones I met through this site. They have been a blessing and a big help to me on this journey but I have no desire to add local AD friends. I do not want to become consumed by this disease and I easily could if I was surrounded by others going through the same thing. Prior to placement one year ago my DH never attended daycare and we did not do support groups. I had no desire to spend time with similarly situated folks, again, other than my dear friends from Joan's.
Each of us has to find our own way through this and for me, trying to downplay this part of my life has been the way to go. But regardless of ones situation, I believe staying involved in non-AD activities and non-AD conversations, if at all possible, will be helpful to us after.
Joan, your reasons for choosing to live where you are were so compelling to me that I went back to find your old blogs where you mentioned the name of the place so I could try to find one in an area that would work for us. I am so tired of the maintenance and headaches of this 130+ year old house especially after all the trials and expense of total renovation along with the disappointments in the process and outcome.
I can't imagine what it would feel like for someone to spend one hour caring about my needs the way I have for DH for the past 5 years. I think I have finally accepted that will not be happening and I am developing a very close relationships with an old quilt which knows when I'm at my wit's end and let's itself be wrapped tightly around me as a shiver at the thought of all there is to do. (Speaking of "wit's end" at a little German bakery in Tehachapi, CA, I spotted a sign with that very thing painted in large letters. It now adorns the front of my crazy home!) Every place I've visited I've had fantasies of having responsibilities and headaches lifted.
Joan--as I said--I understand the reasons for your move. You are correct, when there's only one person managing a home, it does take an "army" of helpers. I have been fortunate to find wonderful people to provide those services and great aides to take care of my husband. An added bonus is that I really like these people and they provide some welcome company and normal conversations to my days. Perhaps because you live in Florida there are more people in the same boat to socialize with. I wasn't really able to find that very much where we live.
Developing friendships with non AD people sounds all well & good, if you have time to do that. Unfortunately some of us, like me, are with our LO’s 24/7 except for a few precious hours when some angel of mercy stays with DH while I try to run errands without him. He won’t go to day care & at this time I can’t afford to hire an aid to stay with him & he probably wouldn’t go for that anyway. I’m actually thankful when people encourage me to talk about my situation. It helps me to talk & I make sure that I don’t drone on & on. My church friends are the best.
I am in the same boat as Dazed, I have no one to talk about Lynn or his Alzheimer’s. Sure I have friends and even a large loving family, in that I am blessed. But, all anyone wants to hear is the positive things; they want to talk to me when I am upbeat and happy. But when I need to talk deeper than just "oh I had a great visit with Lynn today"... when I need to fall apart, .... let just one tear form in my eye and everyone in the room scatters. I have never in my life felt so alone. I have 4 people living in my house with me.... odd, I feel a stranger in my home. Don't get me wrong, I love having them here..... but they only want the happy Nikki. Don't cry, smile for us, lock your pain away... thats a good girl! I get so mad I could just scream!!!! But I don't, it isn't their fault really. They can't know what they haven't lived and I imagine it must be difficult to watch someone mourn for a decade or more.
This group here at Joan's is the only support I have. Honestly, I have never met any of you, but I feel closer to many of you than I do to some in my own family. How crazy is that? I now try to come here only when I am upbeat and feel I can offer support to others. If I have nothing positive to say I just read the threads and don't reply. I didn't use to be so closed like this.... I think it must be because I feel forced to hide my true feelings that I am afraid to let those flood gates open. The changes in Lynn ARE amazing, and I do feel so blessed!!! But, it still sucks, and if I let myself think about it too long, I know it will destroy me. hmmmmm maybe you guys who have so many friends who talk about Alzheimer's could send one or two my way!
It's good old Paula. I don't mean old literally. Since I place dh last year I have been alone in the house. But a funny thing happened last week. A family member of his from Canada called me. He said we met but I don't remember him. He told me that his 18 year old son is out here in California now and will be going to college 8 miles away from me in September. He asked if he could call me so he could know family out here. I thought that was so sweet. gullible me. I met him the next day and took him to lunch. He was staying at a motel until the next day when he would be leaving. After lunch he wanted to see my house. Ideas started flying in my mixed up head. I told him there was a cleaning woman there so we can't go there now. All of a sudden he told me he had a appointment at the college at 2:30. It was at that time 2:00. I drove him there because he didn't have a car. He told me he had his name on Craig's list to rent a room from someone. Well, that is why these people got a hold of me. And I though they just wanted family around. I offered to drive him the next day to anyone who calls him regarding a room if he would like. I never heard back from him. The point of this whole story, is I'm alone, but after thinking about some stranger coming to live with me in my house that I bought with dh, made me sick. I learned a good lesson there. It's ok to live alone in the house. Please feel free to contact me anytime. You have my e-mail address, and I will write back with my phone #. I can call you, it's free from my cell phone. All you have to do is let me know if you want my number
Nikki, Nikki, Nikki, Don’t keep those feelings in when you feel like you are going to explode. That’s why we are here! We are the ones who understand. We love the fact that Lynn is doing so much better & we love hearing about it, BUT we also know that you need to vent & if family doesn’t want to hear it then you have to tell somebody & that is what THIS family is for! So PLEASE tell us. We love you!
When we moved to Florida 5 years ago, we had our "dream" house built. The exact reasons why we chose that house and that location ended up being why it turned out to be the wrong move. It was a big house on a cul de sac at the very end of the development on a canal. What could be wrong with that? It was fabulous. Except it turned into a nightmare. We were isolated from everyone. The ceilings were 10 feet high, i.e. - where the smoke detectors were; hurricane shutters had to be put up and taken down every time we had a hurricane warning; after the year warranty was up on the house, every single repair was MY expense, including taxes and HOA fees that were skyrocketing.
One day, I was sitting in my support group, and one of the women who had just moved from a huge house into a roomy apartment, mentioned how she loved being able to have no worries about repairs, and she could lock the door, go on vacation, and not worry about anything. A light bulb went off in my head, and I realized that's what I needed. 10 months after we moved here, Sid broke his foot (from his diabetes), and he has been physically disabled ever since from one thing or another. He can't do ANYTHING around the house. Thus the blessing of having moved here. I just keep praying that the rent won't go up so much that I won't be able to stay.
As I said, I have friends separate from the neighborhood in which I live.
I live near Joan, in a gated community. Most neighbors are younger and more active. Since I own my house I am responsible for the upkeep. The HOA is responsible for lawn care, club house,cable and other amenities. For me it is a compromise that works. No sudden increases in rent. Lots of choices. I am fortunate to have a daughter and sil who live several towns away but who help with ladder work. I'll tackle most anything-but not high ladders.
I started thinking last year about moving. We have a nice house and yard. But I am so tired of all the work. I still have a part time job and DH and DD to look after. I am thinking about selling the house and renting a nice apartment when DD is out of school. I like the idea of just calling someone to fix any problem I may have :) Joan I can fully understand why you moved. I just may do the same some day.
Nikki, We are here good or bad. We are ready to hear what ever is on your mind.
Joan, "dream house" yes! Similar situation here. In 2005 before DX and while he was still working we bought our house in Richmond VA with plans to move into when DX retired. we put $100K down thinking it was the safest investment we could make with retirement funds. ha! Top of the bubble. We met with an architect, made some improvements, met the neighbors and a local Bichon for our pups and visited the area (son lives there) many weekends. I was so happy looking forward to creating our dream house there around 2009 and still have numerous files of "ideas" . We rented it out until we could move in but then AD happened and like for all of us that dream died and Jan 2007 came DX.
I moved us here instead selling the house we had lived in 25 years in Northern VA to get to cheaper location closer to my family and where DH could walk to music and galleries and such and we just kep renting the Richmond house. In hindsight financially it would have been better to move into it. Tried to build a new dreamhouse here resulting in nightmare renovation. i almost resurrected part of the dream of the Richmond house earlier this year with lots of support from this board. that dream crashed painfully and now that house is on market for $50k less than we paid for it and we will be lucky to walk away with $10k at settlement.
dreams die hard. i feel for you on the loss of yours.