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I Have Alzheimer’s or Another Dementia
I just came back from a Christmas party where I knew only the hostess. I am realizing that I am losing my interest in making small talk with strangers. I would rather be home. I enjoy my own company.
But I know socialization is important. How important is it? Should I force myself to socialize with strangers, or be content with my own company?
I also feel like I don't like to have my routine interrupted.
Iris and Bill -
yes exactly. when is socializing actually being overwhelmed and not helpful?
Just posted about this - my husband wanted me to go with him on an important personal matter and it involved traveling by car, staying with my cousin (who I love) and being around people who talk fast, stare at phones, and Holiday stuff.
I had made arrangements with a neighbor as an emergency contact and stayed home. We went to grocery and I stockpiled deli stuff for a week.
Even though his extended family is important to me I knew the events would either drain me, or put me at risk of melting down. When he called last night to check in I could tell he was having a really good time and I was glad he got to relax and have fun.
He will be home in 12 hours and I enjoyed myself even in this work zone.
His mother is going to spend the night here (!) in the room upstairs where I usually sleep and even that is making me a little edgy.
Does posting here count as socialization? I think so.
Introverts recharge by being alone.
Extroverts recharge by being in company of other people.
Enjoying one's own company - relate to that very much. Missing church today, only 6 people usually attend and we meet in basement after service. That seems to be enough for me for the week and I'll miss it.
Iris - fortunate that you could go to the party and handle the occasion. Also that you could evaluate the worth of getting out there.
Bottom line, we all have to determine our comfort levels and what helps and what does not. Hope to do this as long as possible.
Thanks for bringing this up.
Being on this board is grand, but does not substitute for being with people.
How about one friend you can meet for lunch. That would be much better and you actually have a conversation.
I kind of disagree with Mimi a bit--I think being on this board does count as socialization a great deal. Because here is where we communicate with people who understand us--our peers--whom we can be real with.
Posting here goes a long way in keeping me from feeling isolated. Another thing that is a big help for me is visiting in the chat room and communicating in real time.
I have no more close friends to go to lunch with and have a conversation. Any people I might go out with are social friends, and I make small talk with them--no more in depth talk.
In fact, later this week the Women's Support Group that I used to attend will have their annual Christmas luncheon, and I will attend, even though I have not been attending the weekly support group meetings. I know most of the people who will attend. I have attended two recent gatherings at their office in the past few weeks.
I began attending the Women's Support Group years ago when I was feeling isolated. It met a socialization need for me at that time. I have also attended a Family Caregiver Group, at which I was the sole patient.
I also attend two monthly support groups, one for patients with multiple sclerosis, and the other for patient with heart disease, and I attend a monthly hobby/interest group.
I think a weekly group is important for me. My problem with groups is, that they are not focused towards my specific needs. I do not really care for them, but they get me out of the house.
I still feel the need to get out, because I don't want to become a hermit.
Mimi - how I would LOVE to have lunch with one close friend!
Right now I have no one but my husband (and daughter who lives 2000 miles away) willing to spend time with me. The support group is 60 minute drive and we only made it twice in 6 months. The after church brunch is nice, all familiar people, but one woman who was friendly and said she wanted to get together has declined every invitation and now seems not so available as I hoped.
we are isolated, if I were working on a book or painting I might not feel so unwanted.
You seem like a woman who has always had friends who loved her and enjoyed her company and still do. All my close friends are dead. Actually I have one friend who has been like a brother to me for 45 years and he called me this weekend when I was home alone and I learned how to have a conversation with him over the hour we talked! He caught on quickly to my pauses and let me think - not many people are comfortable with the pauses.
I think Iris is referring to "socializing" for the sake of it, not like the trip she chose to go on which must have been a lot of "socializing".
Do you have any other ideas for me? I did volunteer for a couple months at thrift shop, sorting donations, but it became awkward...I am only realizing now some people were just uncomfortable with me. My brakes and skills are changing.
I also seem to have 2 posts being written here, one on top of the other...????
Isolation is a problem for older adults and is a consequence of a dementia/CI diagnosis. I think a concerted effort should be made to involve patients into support groups, but that is not being done. I wonder why?
Every other disease that I have has a local support group facilitated by a main organization: depression, lupus, fibromyalgia, sleep apnea, heart disease, lung disease. I don't even have multiple sclerosis, but I attend their support group.
I am an introvert (INFJ personality type) and need to recharge quite frequently. My work is very social and I need to de-compress on the weekends. I would feel uncomfortable at a party where I only knew the hostess also. Many of my friends have passed away and there are only about 3 left that I am close to. I do not socialize like I used to. Being on the board is a form of socialization for me. I see friend's on special occasions, talk on the phone one or more times a month and have someone over several times a year. Perhaps I will socialize more when I stop working.
More recently I have been doing peer-to-peer calls to newly diagnosed persons for the Alzheimer's Association. Initially, I made the first calls and then 3 weeks went by and I completely forgot about the women I called! Some how I remembered last week and put my purple folder on the table with their phone numbers to remind myself. I have had some really interesting conversations with 2 of the women I call which have included some good laughs. They both appreciate the calls and I enjoy the calls also. Helping them helps me. We often laugh about not remembering if we've already told each other this or that about ourselves. And we laugh more about being able to tell each the same things over and over again as if it is new news!
Socialization is important but when it feels uncomfortable or like pressure it is not beneficial. The key is finding friend's that we feel comfortable being ourselves with and not feeling judged.
Llee, good for you.
We attempted to get that going in our state, but I've yet to get a name.
I had a small support group for those of us with dementia, but lack of support on a few spouses part, left only two of us.
I do visit the others.
One was particlarly appreciative of being in the group. She freely admitted her diagnosis. I visited her recently and she asked where she had met me. I told her. She looked at me and told me that she did not have Alzheimer's. In fact she was one of the leaders of the Assisted Living where she resided. I just answered, that's wonderful. Of course she kept repeating stories the whole time I was there.
And it answered my question of whether a person who was diagnosed at an early Stage and admitted the diagnosis would move on to that Ag....( I can never remember that word) stage.
Are you thinking of "agnosognosia," Mimi?
That's a good question. I am always thinking about it. So, it appears true, that anosognosia can develop later in the course of the disease.
Ilee, it's great that you are a Peer-to-Peer volunteer. I don't believe I have seen you mention this before. It sounds like a great benefit for you and the other person.
There are so many things I want to do. I want to volunteer in adult literacy and ESL tutoring, and I want to visit the many senior centers and senior programs in my area. I have to get my home in some semblance of order first.
I think I do better with a group of people that has a focus, instead of trying to make small talk with strangers, even though I am good at small talk.
I never knew that either about the agnosognosia. Mimi, I'm sure those visits have been much appreciated over the years. Iris, I'm on the early stage advisory committee for my local chapter. I cannot yet do the speeches for the walks because of work but I can do the peer-to-peer calls and reach out to others. I have 2 newly diagnosed women so far and a third that I'll be calling this weekend. You can hear it in their voices how relieved they are to be able to talk to someone who understands. It is an opportunity, a special opportunity to be able to give someone hope like all of you gave to me when I came to the board. I'm grateful to be able to take what you all have given so freely and pay it forward.
Iris, it sounds like you have a good plan. I believe there are new friends on the horizon for all of us that we have not yet met.
Tutoring and visiting senior centers will be easy for me. Getting my home in order is hard. It's my stumbling block. It is what is keeping me from tutoring and visiting senior centers at this time.
Hi, Marta. Thank you for your kind words. I actually have a co-morbidity that my neurologist mentioned at one of my initial visits, which is chronic fatigue syndrome. He even sent me to an infectious diseases specialist, who did some viral studies, and confirmed that I do have post-viral chronic fatigue syndrome.
However, he had no specific treatment. His only treatment was to attempt to stimulate my immune system with Chinese herbs, which I took for three months. After that time, he told me I did not have to come back to him.
The cognitive impairments of CFS are lumped under the vague term of "brain fog." I don't know what that means specifically. Is it related to amyloid or tau or anything else concerning Alzheimer's disease? I don't know, and apparently, neither does anyone else.
So, really, I don't know which I am dealing with. On the other hand, the medications, Exelon patch, now generic rivastigmine, and Namenda XR, along with the other aspects of Best Practices, are helping me. I know I would not be functioning the way I am without these treatments.
I am 65 years of age. I have twenty years to go until 85 years, when ~50% of people have some sort of dementia. So I will not be surprised with anything that happens. Forewarned is forearmed, meaning I am preparing myself for the worst, but expecting the best.
I have been having better social experiences.
In the past four days, I have attended four Christmas parties put on by groups that I am a member or participant of.
At two of the groups I did not know anyone but the hostess, but I still had a good time. With the other two groups, I did know several of the people. Again, I had a good time.
I think the difference is that in these last four groups, the other people were more talkative and sociable. I think it is a matter of being with the right group.
"a matter with being with the right group."
YES. I was thinking about what socializing means in terms of dementia health. While we all know the help the board helps us, this forum, my only other time is after Sunday church service where people gather in basement for coffee and chat.
The helpful part to me is being in group with subject other than dementia. I feel comfortable with this small group even though almost everyone is...standoffish in some way or other.
I used to talk to people when I swam at local pool but found most people uncomfortable with my slow speech. They think I am drunk or mentally ill or what? Children told to "leave that woman alone" etc.
Your success makes me happy. Your travel makes me happy.
I just have not developed the ability to hide my problem or make others comfortable with it.
It is terrible that socializing becomes so difficult for us. I have two weeks now of no social obligations. I was invited to a neighbor's for Christmas dinner, but I wanted to be by myself. I am not anti-social. I just need time alone. A lot of time alone.
Making idle chit-chat is hard. It is better to have parallel activities. i.e., enjoying companionship while sharing an activity. This is common in the social life of young children. It can be good for us, too.
I am also a huge introvert, and extremely shy...but I still feel socializing is very important to staying functional for as long as possible. By that I mean, real time conversations. True, it pushes me beyond my comfort zones...but one of the saving graces of this disease progression is being less concerned with my emotions.
There is just something about being engaged in a real time conversation that pushes us to use our skills (even, and especially when it is difficult for us)...and the pleasure of the interaction makes it seem less like PT and more like fun, and sort of just pulls you forward. I find that the more I do it, the more I am able to do it.
Plus, a side, and unintended benefit is others will often say something that allows us access to things we still know, but could no longer access on our own.
Now, of course, no one should force it...or join situations where they are uncomfortable. But, I look at it like working out or taking my medicine (also things I'd prefer not to do), as necessary for achieving the best I can with what I have.
It can also be challenging to try to interact in social groups that are not necessarily accepting of our symptoms. Sometimes it can work out very well, like in the wellness circle I attend (that has nothing to do with dementia, and is more about food and healthy eating), but other times it can be all wrong...like contrived activities for us. This is why I love the online video support groups...because some do not focus on the disease, you have people who get the disease and are patient, you can see you are not alone in what you face, and you get real support...plus, you come to really care about the people in your groups...and they become like family.
It is a sad, unfortunate issue that the big orgs don't provide in person support groups for us...like they do for the caregivers, since socialization is such a big one to keep us functioning. I have no words for the emotions I feel about how us with the disease, have to overcome the symptoms to provide this for ourselves...but I am very celebratory that we can. Started by Richard Taylor, I am told...wish he could know how it is growing.
Anyways, I definitely see the value in socializing (in terms of how well I am doing)...and think it should stay in the Best Practices line up.
I went to a small program at the local library this afternoon, led by a speaker. This was my third time attending. This is the type of activity I like to do, to attend educational or cultural programs. This was a combination of both.
I did not know anyone, but we are getting to know each other by sight, from attending these programs. I gave one of the women a ride home. These will continue throughout the spring, every two weeks.
It is refreshing to have an outside activity that is not dementia or illness related. A lot of my socializing revolves around illness or being a senior. This program attracts all ages, including high schoolers. I feel like an everyday person.
Way to go Iris! Taking the initiative to put ourselves out there amongst others with whom we may share a common interest is proactive and a great way to socialize.