I just want to thank everyone for the warm welcome. I hope to join in more when I become more familiar with how to do this.
I had a bad weekend. Went to dinner at the home of friends (4 couples in total), but my DH was anxious all evening and complaining that he wanted to go home. I was embarrassed and tried to keep it low key, but finally we had to leave. My depression came because I felt I no longer identified with my friends. They were all couples, having light-hearted conversations, and suddenly my world felt so heavy. He used to be such a great person at parties. He was so clever and had everyone laughing. He was charming and witty and so bright. How sad this disease is -- to rob people of everthing they once had. We used to communicate with just our eyes and finish each other's sentences. I miss him so much.
Guess I'm just feeling sorry for myself. But once again, thanks to all for reaching out and for the hugs.
The subject of socialization is very important. So many of our members have lost their social circle due to AD, and there really is nothing that can be done about it. We can't force people to socialize with us if they are uncomfortable.
Sid and I are extremely lucky in that we have become social friends with the couples in our support group. Our group is different in that we all meet together for a 1/2 hour, and then the caregivers go with one social worker, and those with the memory disorders go with another social worker for an hour. Each group gets to discuss their own issues, and many of us have become very close friends. We go out to dinner, movies, have even traveled together. We're always on the phone with each other. I know how unique this is - My social workers ask me to get the word out through all of you to ask the Alz. Assoc. in your area to consider forming a group like this. If they are interested, and want my social workers numbers, let me know and I will get them for you.
I would suggest logging onto the home page - www.thealzheimerspouse.com, clicking "previous blogs" on the left, and reading #6, 151, and 152 about socialization and support groups.
Yes Pat...I can completely understand how you would feel marginalized in that particular set of friends. I think what happens eventually, if we're fortunate, is that we kind of re-form a social network that's based more on family and/or singles and/or people who would understand (such as the support group couples Joan mentions.) Not that it's the other couples' fault...it's just that the socializing to which that group is accustomed is predicated upon everyone meeting a certain profile: content, healthy couples. So, when you no longer fit that profile you're naturally going to feel--heavily--the weight of the difference between your situation and theirs. It's not uncommon for a similar marginalized feeling to overcome people who are divorcing, for example. You are no longer really a part of what that group is about.
Frankly, it's impossible to observe the interaction of two healthy people in a good relationship and not feel pangs of envy.
I'm sure they're nice folks, and you might find you relate to them individually better than in the group setting. I just think that we--in the AD spouse situation--often find ourselves more at home among a social group of motley, mixed people, rather than couples' groups.
PatL, my wife was the social butterfly of our team. She was an outgoing, gregarious conversationalist, and I was kind of the shy one, but not afraid to talk, just didn't like the spotlight. Now I'm the one that does the talking (she can't at all) so we have no more friends except one or two, that maybe bring a meal or sit with her, both fairly rarely. Used to be in a bridge group, dance club, etc. in the 'old' days. Now...nothing. Not the retirement we dreamed of years ago. So what I am saying is, you're not alone here...lots of helpful friends abound here.
I find myself not taking the initiative for social gettogethers, because I don't want to pressure people into socializing with us if they don't feel comfortable. I experiment a little with emails about other subjects and just casually suggesting some kind of get-together. When people do suggest getting together, I latch right onto it and hang on. Lately I've found that a group of about six people works pretty well. There are enough people to keep conversation going and not so many that DH gets to feeling completely locked out of things. In a larger gathering, like family occasions with noises coming at him from all sides he will often retreat into himself. DH can't really play cards anymore, so the evenings that we used to spend playing bridge or darn-it don't work anymore. I've suggested getting together in the afternoon (we're all retired) for movies or just coffee and a chat or a restaurant meal. Now we've got the blackberries on I've been inviting people over to help us enjoy them. Since we're all retired we can do it in the daytime and maybe take a walk around the garden. Sometimes it works, sometimes it doesn't. But I think it pays to keep trying. Our best days are when we spend some time with friends. Joe, I know what you mean, many of our friends have commented that I've become much more talkative! Dh used to dominate the conversation; I couldn't get a word in edgewise.
Yup; it is a very very common problem with us spouses. We don't fit in anymore. Which is why lots of us tuck our LOs into bed at night and come here to visit and vent. Not the whole socialization package; but a definate help.
PatL, its a sad state of affairs when we find that we longer fit into couples activities. its very common for us to find our old friends and family for that fact back off and we lose contacts exactly for the reasons mentioned. i would have liked to have another AD couple earlier to socialize with so i could have had some friendship outside AD but that would also have allowed DH to socialize with his 'own kind' that wouldnt judge or make him uncomfortable. this is where family comes in if they are available and willing to meet the criteria an AD person needs. unfortunate but sadly many of us have recome reclusive due to the same happening to us. divvi
PatL, with FTD, social anxiety was one of Jim's first symptoms along with depression and regular old anxiety. Our social lives were full and he was the ultimate host. He loved mixing drinks, barbequeing even planning menues for our closest friends when they all came north from Massachusetts. We would entertain 3 couples for a whole weekend and even longer each New Years. It was so much fun. As a result of his illness, we no longer do that kind of entertaining, and his illness hasn't allowed us the oportunity to make friends here in Maine. It's hard, it's really hard, but we are not alone, we have this online family to spend time with.
We have -had- a group of about 20 friends and we always had get-to-gethers - but they were mostly at our house. My house and porches are very conducive to parties! So I would plan it and everyone would pitch in. We did this monthly or every other month- depending on the weather, etc. After DX, I didn't plan them so often - and guess what?? No one else did either. We rarely were invited to their homes. Now, I have one couple and one widower whom I invite over for dinner or whatever. That's about it. We still go to breakfast every Sunday morning with this same group of "friends" - because I feel DH needs the socialization. I can do without it, and things are not the same with them. I'm basically a loner and can entertain myself here at home.
Another great subject to discuss, but, it makes me sad because it reminds me of how much of our previous life that is gone and how much I miss it. But, it also reminds me how good life was. As many of you said, this was one of the first things to go. I tried to have people over for dinner, etc., but, it just didn't work out very well. We meet two couples at a restaurant on two different evenings per week, but, I sure miss having them in our home and going to their home.
Because of all this discussion about socialization, I rewrote and updated an earlier version of a blog I did on the subject. Although it is still Monday (for another 50 minutes here on the East Coast), I just posted it for tomorrow.
I invite everyone to log onto the home page - www.thealzheimerspouse.com - and read the blog. Post all comments about the blog and your socialization problems/solutions here.
It's funny to me how this "coincidentally" happened to be on the site tonite as I have had a "pity party" this weekend and most of the day today about this very subject!! In fact, I just jotted this in my journal tonite: "Note to self: After this journey is through, get new family and friends". This is sad to me, but def how I am feeling. I still try to call people & see how they are doing, but I don't get the same in return...even people who I thought would not abandon me...so so hard! People not only don't know what to say to us, but they also have THEIR OWN BUSY LIVES...it's just the way life is, sadly. It's football season...school is about to begin...live is marching on & people are just plain busy ~ I know I am not alone...just from reading these posts over the last hours, I know I am not alone...but if feels like it sometimes. Perhaps tomorrow will be a better day...perhaps.
Wow, I can identify with these loneliness issues. We live in a retirement community where there is much socialization. However, once your DH is diagnosed and the info becomes public knowledge - things change rapidly. We do have one couple with whom we have shared many meals, movies, even caring for each others pets while on vacation. Lately I realized that we still will get together IF I do the calling and arranging. It is strictly a one - way street. I still enjoy their company very much but it hurts to not have the back and forth ease of companionship that we had for many years. My DH will often ask "Who is going with us to dinner?" I can't dredge up someone on a moment's notice. So I am left feeling inadequate - that I am not enough company for him, even though I do EVERYTHING to keep our home functioning. Before the diagnosis, he was very content for the two of us to do everything together and resisted group activities. Now that he has AD he asks for more socialization. I am blessed with a group called "Special Friends" - just for AD folks. They meet every Thursday from 10 - 2 and enjoy companionship, lunch, frequent musical performances, and other activities. This also gives me 4 hours per week to do my own thing. It hurts to lose the social network that I once took for granted. Even the neighbors are not particularly helpful. In the beginning, they would say "What can I do?" and then not much contact at all...... unless of course I initiate it.
We are all in the same situation. So difficult especially when your home was "party central" for years, and suddenly you find yourself isolated. The very people I never thought would abandon us have, and it hurts so much. Fortunately, there are a very few die hards that are hanging in there for us, but getting together is certainly nothing like it was before all this mess... brief encounters at best. Makes me so sad to evern write this.
I socialize at lunchtime with girl friends. That is my social life. We used to have friends over for bridge; have parties, go to parties...all a thing of the past. As Kathi said, we are all in the same situation.
As my therapist says, I am only a walk-on in Everyone Elses play. I feel like no one even comes to see MY play. Even my closest friends don't call or email very often, nothing like the daily updates we used to send each other. If I write a pity party email, God Forbid they should respond. Oh well as NatsMoms said, NOTE TO SELF: When this is over, Get NEW Friends. When this is over I hope to meet some of you. I still think we should build that self-contained community :o)
Susan, I agree - and we can still take phranque's cruise too, when we're not in our community! We'll have a summer one in Maine and a winter one in Florida!
Susan L....you could write ME. I'm working on re-establishing some old friends, figuring out how to make some new ones. Don't know where I'll end up or how. Feel like I'm adrift like a dandelion seed.....the wind's in control.
love that natsmom. when its over new friends new family. great idea- now to get that accomplished.
i also have a vengeful side i guess, when it is over and i am able to do or go places if i can, i wont be doing it with 'family or friends'- it will be with NEW friends and i will be SURE to let everyone know what a great time i am having without them now-its going to be payback time, bigtime. sorry vent time. divvi
Wow! I can relate to everything all of you have said. Yes, Vicki. My home, too, was the one to which everyone came. I love entertaining. And NatsMom, I love the phrase "Pity Party". It's so right on.
I do not belong to a support group. I'm still working full time ... love my job ... have been here for 19 years ... and have long-term friends (work friends). But lunch time is very social and since it is a healthcare facility, and my DH volunteered here for four years, many remember him and hold him in high esteem. When they found out about the AD they were very sympathetic and often ask me how he is doing. I know that soon I will have to give serious thought to retiring. Right now, I have hired a friend to come in and sit with Rocky for four hours every day. Jack comes at 2 and leaves at 6 when I come home. This works for me right now, but I realize in the near future, as things progress, I may have to make changes. I've been hanging on to this not only for the health insurance, but for the socialization as well.
I am inspired by the group support social network many of you talk about and am giving serious thought to perhaps developing such a network in my area. Reaching out here is my first move in this direction. When I have to move on, I think this will be the way to go.
Again, it's so comforting to be part of this group. Hearing you express all the same thoughts as I, has lifted my broken feelings. A big group hug to all of you.
Joan - great blog! Divvi - I agree, when this is over I'll find new friends and the old flippin friends will get postcards, without the "wish you were here" Mary - The season themed cruise is perfect Jen - Maybe we can rent a big fancy bus and tour the country, picking each other up along the way! Everyone - Joan's latest blog is the perfect reminder of how important we all are to each other and a reminder on how we should treat others.
The village of Harrison is called "The Friendly Village" as is custom to nickname villages up here. Well I cannot find anyone to cut my grass, the guy who offered never showed, two weeks in a row. My neighbors now look the other way, even though Jim helped them when they needed assistance with snowblowing and cutting down trees. So right now, there is a guy outside who runs a home maintenance business, cutting my knee high lawn. He helped me out with plowing last winter when Jim was in the hospital a couple times. I didn't even ask how much $$. It had to be done at least this one more time before fall, my brother is trying to find me a tractor that will convert from mower to snowblower. I didn't even know they had such a thing. Can't you just see me riding along in my tractor, blowing snow into my not so friendly neighbors yards ;o) We used to get together with these people once a month for drinks, etc. Oh well, New friends it is.
Susan so sorry even your neighbors are looking the other way. When we lived in Massachusetts we had a very crotchety neighbor who was very proud of his lawn. When dandelions were in full puff my kids used to blow the seeds over the fence to his lawn. He once herbicided under his fence and completely ruined my prize vegetable garden.
We have RV friends who would call at least once a month and we would chat for an hour or more. Last fall when I told them the diagnosis the phone calls stopped. Her husband is not even forwarding any emails to me nor replying to mine. I phoned her around May to touch base and she acted like she couldn't get off the phone soon enough. She has lots of medical problems that we were there to support her through, but now she just 'disappears'.
We went to the new house this evening to put away some can goods and match the colors for the verticals and blinds. The neighbors to the left of us were out, and we met them. Very nice couple. The man is a member of the Men's Club that Sid is looking forward to.
When we got into the house, Sid was upset because he couldn't remember their names, and was worried that he would never remember any of the new people's names. That's when it hit me that we must tell everyone about his condition immediately, so they will understand if he can't remember their names or when they're going on an outing. I would hope that people living in Independent villas next to an Assisted Living Facility with a dementia unit would understand and not have a problem with his forgetfulness.
It is such a tiny neighborhood - 8 buildings with 4 Villas in each, all surrounding the pool and clubhouse. You can't miss bumping into someone walking around the circle. I do hope that they will be friendly to Sid, once they are aware of his situation.
Of course, we have our support group buddies with whom we socialize, but I want us to be able to mingle with our neighbors without them shying away from Sid. As I said, I can't imagine people in that community not understanding, but you never know.
Sid is looking forward to the casino trip next week.
I will be believing it will work out. That was one of the reasons we felt so 'at home' when we worked at the RV park in Nevada. All the residents had medical problems ranging from minor to dying of cancer or AD. Everyone just mixed in like family. They made allowances for those who needed it. It was great. I guess you could say that Art with his short term memory loss (at the time) fit right in. We all will believe the same will happen to you and Sid.
At our church, EVERYONE wears name tags at all functions and on Sundays. It helps new people learn namews and helps old people remember the newbie's name. If everyone could get a name tag (Office Depot $3.50) to wear on outings and whenever they are out..just a regular thing on their shirts, it would help newbies (and memory affected people) If this property is new, you could suggest it as a way for all the new residents to remember other people by name.
I read today's blog - like so many others here, our lives were with each other. We may have done things with other couples, but we were always together. When he was at work was about the only time we were separated. I had to work even while the kids were growing up, so when they were at school I was working. When I went home they were there. After they grew up we both worked days and then were together the rest of the time. I rarely went out with 'girlfriends' and if I did I felt guilty leaving him home alone. It is that way now - still, and seems like it will stay that way.
This may sound cruel, but I am looking forward to being alone and doing something just for me and not feel guilty. Of course, I will miss not having him around. After 38+ years of togetherness, as many have found out, it will be hard.
My DH does not socialize either. He spends more time in the car waiting for me to finish talking to people than he use to. He doesn't talk to people much at all and when he does he doesn't even remember what they were talking about. Sometimes I think that might be why he doesn't talk to anyone because he can't keep up with the conversation. He barely talks to me!
We use to go places and my DH would complain about when are we going to leave. He would start asking when we were going to leave before we would even get there. That was really irritating and then after a while I would try telling him that we will be there for 2 hours and at the end of 2 hours I better be ready to go or else. So then after that got to be hard for me to do I just gave up and quit going places with him. I don't go very many places anymore but lately I have felt like I need to go for ME! Don't even worry about what he wants, just because he doesn't socialize doesn't mean I can't. The only difference is I have to make sure that he is alright before I go out. I don't know...I think it is just a balancing act. We still need to keep some simblance of our life, don't we?
However you look at it, it is a huge depressing situation that can't be helped.
It's not cruel to want "ME" time. It's realistic. Care giving is all consuming and exhausting. As his condition worsens, you will find yourself making a life of your own with your own new friends. When you have respite care givers or full time placement for him, you will take baby steps at having time for yourself.
As I said in the blog, it's not what we planned or want, but it is what we have to do.
Love this topic! During the first few years after my husband's diagnosis, I was upset at the lack of offers of help from friends. Then I gradually realized, even the social invitations were getting fewer and fewer--now they have ground down to practically a halt! Unless I pick up the phone and make it happen--it doesn't. I know that part of this may be due to the economy--some of our friends are just going out less--but most of it is due to the diagnosis. Here's an example--last summer a friend had a major birthday--I bought a gift--didn't see him nor his wife in person until Feb. to give it to him. (And that was only because we were invited to a Super Bowl party.) I know that if I was contstantly on the phone setting up plans, we would have more socialization going on. But I've gotten to the point where it irks me to be the one to always have to initiate it. There's something wrong with a society that shuns people when they get sick. Does this happen with other types of illness too?
Charlotte and Deb - I totally understand the necessity of "ME" time. No, it is not cruel or insensitive, it is so necessary. It's a healing time. That's how I feel about my time at work. I hope to be able to do this for a long while. I'm not ready to give it up. And I pray, when I have to,I'll be able to do it well.
And, no, I don't understand either why some people have to shun those who have an illness. I guess it's selfishness.
Joan, I hope it all works out well at your new home. I look forward to hearing all about it. You're doing a wonderful job and a terrific balancing act ... walking through this tough journey trying to keep everything in place and providing Sid with a calm, comfortable enviornment. My hats off to you.
The issue of lack of socialization really hit me today, because I just read an article called “How To Enhance And Preserve Brain Power As We Age”. This is another article that says that you are more likely to be diagnosed with dementia if: you are depressed, you are isolated, and you lack mental stimulation. This sounds like the very definition of a caregiver’s life (at least mine).
Sometimes I really do wonder about the ultimate price we are paying for being caregivers for our spouses. I mean, if somebody told us at the beginning that we would be, say, 70% more likely to get dementia if we were caregivers, would we really have wanted to do it? I know that being a caregiver for someone with dementia means that we are already more likely to die of other causes sooner than people who are not caregivers. But watching someone die with this terrible disease really makes me fear it for myself, especially since there will certainly not be a loving spouse available to take care of me.
We have a good example of people avoiding social contact with us. Three other couples, all around our age, joined our church about the same time we did. It would have been natural for the four couples to get together outside of church activities. The other 3 couples do this, having dinner at the homes on a rotation basis once a month. Marge and I have never been asked to be part of this, although they have not had any hesitation to let us know it is happening.
marsh you are a better person than me- if you arent seeing them socially i think you should let them know that their exclusion is rather obvious for you and your DW and its quite distasteful and hurtful. avoidance is the word on those types. divvi
I have to be careful how I react to this since one of the wives takes care of DW once a month while I go to a meeting. I'm not sure I blame them for not including us. DW would not be able to take part in any conversation, prepare any meals, or in any other way interact with them. Other than this one issue they are friendly and helpful.
Marsh, this supports what others have said about needing a different kind of friend in these new and different circumstances. If this woman takes care of your DW every month, then she is being very helpful indeed. When I reach the point that I can't leave DH alone, I will be very thankful if I can find a friend that will do that. I think it's good to be realistic and not be too harsh on the people who no longer know how to include us. With two couples we've changed the things we do together, so that DH can (for now anyway) be included. One couple that we used to see only on a weekend hiking trip with a group once a year, now joins us for a movie and restaurant meal about once every six weeks. I keep it active by sending an email when there's a movie I think they would enjoy. Of course I'm lucky DH can still do that.
In Richard Taylor's book he talks of staying away from large gatherings because he can't follow the conversations - too much all at once. I think that explains why when we had my family reunion he stayed in the motorhome. In the past he would have been right in there joking around and reminiscing, but due to his short term memory loss I know it is hard to keep track and with many talking at once, it has to be hard.
Most of the time he did. There were the 7 of us plus the 4 spouses (including him in that number) and a few kids/grandkids, but mostly just us adult 'kids'. He fit in with my family from the first - wish I could say the same for his. His were the 'stuck up' New England type, no sense of humor, too serious, etc. We use to drive them crazy because we were never in a hurry. Our attitude on making it to visit extend family was: if we make-we make it. We came 3,000+ miles and if they want to see us that bad, they know where we are. His mom finally started having get togethers when we visited. His parents were the only ones that ever visited us - we moved to the NW 1 1/2 years after marrying. They hated how slow the pace of life was here.
Anyway, he kept to himself mostly sitting in the MH doing word search or watching recorded TV since we didn't have the DISH set up for the TV. It bothered me at first but then I told myself I needed to get use to this, so just left him be. It hurt but this was probably the last time all 7 of us will be together. It was a great time since we are basically in 3 different generations (70, 69, 62, 57,56, 48, 46). We shared about our childhoods and growing up since we were each really different.
If you're dealing with EOAD, it's difficult, if not impossible, to find other couples--in or out of a support group--who are in the same boat. We have not met anyone in the Baltimore area who is in our situation at our ages. The couples we met in support group are wonderful people, but are 10-15 yrs older chronologically (a different generation). We do have friends their ages, but our friends have "young" attitudes, which these couples do not.
How do you make new friends while most of your time is spent caregiving?
In my case I believe the current lack of socialization is of our own doing. In our church group they have an "empty nester" potluck the first Monday of each month. We always went to it. It rotated to different people's home every month and we had it here several times. Finally Clyde didn't want to go because of his embarrassment for his AZ, and I was okay with that because of the effort it took at the time to fix a dish to take and to watch after him at the gatherings. We also have stopped going to church because of the unpredictability of his incontenance. The friends still call once in a while but the calls are becomming less frequent. As a family we used to get together nearly every weekend, but as the disease progressed the family had other things they had to do, so that stopped. I don't blame the other folks in our case, even his kids; I think it is just too hard for them to be around their dad now that he isn't "really" their dad any more. I do have about three LBU (Long Before "Us") friends that keep in touch by phone and email on a regular basis, but they are too far away to socialize with. I think the lack of socialization here has kind of "just evolved" and is the nature of the beast.