Have I missed something???
Had a Neurologist app't with my DW and all went well until he ask how her social life is going. My DW said "good' I talk with my family and neighbors often. He then said it would be even better if she would visit other social groups outside of that. I really didn't know what to make of that being my DW's conversations are all over the place and often times make no sense whatsoever. Family, close friends, and neighbors are aware of her condition and are very patient with her but those who do not know have the look of "let me get away from this crazy woman". I respect her Neurologist, but I have no intentions and planting my DW in any social situation where no one is aware of her condition and have her looked at as some sort of crazy person.
Anyone have any thoughts on this….Thanks
Comments
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When my mom was first diagnosed we moved her in with my brother who works full time. She was home alone all day. It was not good. She was lonely, depressed and some days didn’t even bother getting dressed in the morning. At a follow up appointment the neurologist stressed the importance of social interaction. I eventually moved mom to an Al facility. At the facility she made friends and participated in group activities. It was so good for her. Obviously your wife is not home alone and has you for company so it’s not exactly the same. But have you considered some kind of adult day care or elderly community center visits. This may also give you a break from caregiving.
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I don't know how much getting out helps. My wife was diagnosed 10 years ago so we went through covid and no one was going out much, but I think that if she likes getting out it would be good but if she don't want to I wouldn't try and make her.
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Many doctors, including neurologists, are clueless about the day to day reality of PWD, IMO.
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My DH’s neurologist also suggested that we increase his social interactions and mentioned memory cafes as a good option. Also, our town council on aging has some social programs. At this point we’ve just tried to schedule more time with friends and family. The neurologist also suggested a volunteer job, which is a head scratcher given I can’t leave my DH alone. Sometimes I think they go through the recs and maybe something will click. It’s complicated when there’s anosognosia and a setting might be appropriate but your person sees it differently.
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He may have been suggesting a day program for her. This would offer her structured socialization and give you some respite.
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As JDancer said, doctor are often clueless about the daily lives of people with dementia. Since some people with dementia can ‘showtime’ ( be on their best behavior) during doctor visits, doctors often think they are less cognitively challenged than the reality.
It’s also possible the doctor was gently trying to let you know that it was important that you take breaks for your own well being. Check into area adult day care programs. Some are run by local organizations and some memory care facilities offer day care.
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My DW and I are pretty much home bound. We’ve listened to suggestions from the doctors and tried most everything. Daycare was a total disaster, with her only being 56, she didn’t like the place because it was mostly 80+ people there and they didn’t do much conversing. Up until a year ago, I tried to get her out to the family and friends get together, but too many people all talking at once, raised her anxiety so we stopped that. Now we do have visitors come to the house but only in groups of 3 or less. DW loves to go to Costco and grocery store but at her stage she just talks garble that can’t be understood. We go very early when there isn’t big crowds and the staff are aware of her condition. She talks to everyone that we pass so I have to let them know about her condition, and most are very good with her. It’s getting harder though do not sure how much longer we will be shopping together.
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We got a similar recommendation from our last visit with the neurologist a couple of years ago and I had a similar reaction to yours. My understanding is that the doctor is just trying to be helpful. I assume that studies have indicated PWD who have more regular social interaction will progress less severely than those who do not. Medical professionals have almost nothing else to offer us so they offer what they can.
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Pretty early on, I stopped listening to the neurologists suggestions, because they were generalities or totally unworkable with the stage my DW was in. I stuck with just the basics of medications and overall health checks with them.
My DW hated all of the suggestions anyway. She had absolutely no interest in being social with anyone but the people she already knew well and loved, and even that was hard. She was embarrassed about her inability to engage well or follow conversations, but would push past that with only her best friends and family. I saw no reason to push her to be uncomfortable and anxious around new people.
The truth, at least for me, is that I got much better advice here on how to help my DW than I ever did from any of the doctors we saw.
Hugs.
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It's also possible that the study shows people who are progressing more slowly have more social interactions. Studies often mistake correlation for causation.
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I heard comments like this from various medical providers when discussing my DH’s diagnosis - eat healthy, exercise, limit stress, socialize, limit alcohol, keep the brain active - but never anything definitive. How much exercise, what kinds of activities, what amount of socialization is enough, etc. And never much help when I asked for something more detailed. I felt like it was a standard prescription I could read in any short article on the subject. That being said, we are just doing our best to move along remembering that every situation is different. We live several miles from the nearest rural community which makes socialization the most difficult aspect. But we do what we can do. I’ve tried to limit my time away from home not because I’m concerned my DH will use poor judgment but more so that there’s someone around just to engage with. He has a faithful furry lab for companionship which has been a god-send. And I make sure that anything I’m running an errand in town that I invite him and the dog to ride along just so he’s seeing something different than around the farm. Wishing all of us the very best.
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During my husband’s first visit with his neurologist after diagnosis, she recommended specific dietary and exercise changes, strongly advised securing his guns (he had been a hunter - I had already locked everything up), ordered meds, and suggested we increase his social activities.
Like countrywife, we live rurally, an hour from town, so local opportunities are limited. He does talk with several friends by phone daily.
Last week we saw the neurologist for a six month follow-up. This visit focused on his behaviors and meds, how he was feeling. She engages with my husband but looks to me for my observations. It was a much more helpful visit.
I’ve been pleased with the level of care the VA provides for my husband. I would imagine that it could be challenging to make specific lifestyle recommendations with ALZ patients, given that each PWD may be so different from the next. It’s a horrible disease and situation for all of us. 💜
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As the disease progresses , social interactions become very awkward. If you have a “memory cafe” near you that would be more appropriate . They meet once or twice a month for a couple of hours . The PWD and the caregiver ( family, companion) attend with them . Groups sometimes meet in community centers or restaurant meeting rooms. Google memory cafe and see if there is one near you . It’s free to attend . I enjoyed talking with other spouses while we attended . Once my DH stopped accepting redirection from me is when we stopped going , but we enjoyed the times we did attend
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I too tried daycare. It didn't go well. My DW kept asking why are we here? It was a total failure. I have been taking my DW out for breakfast every morning for the last few months (just to get her out of the house). Recently, she has been getting agitated shortly after we leave the house. Within minutes, she comments, "When are we going home?". I say we are only going out for breakfast. She says okay. When we get to the diner about 10 minutes away, I order for us both. The painful part is my DW gets so agitated waiting for the food to arrive that she wants to get up and leave. I keep telling her that the food is coming shortly. Once the food arrives, she is happy and eats well. She also interacts well with wait staff. I can't handle the stress of her wanting to get up and leave before the food arrives so I'm going to probably stop taking my DW out for breakfast. My DW just wants to be at home. My DW likes to call her mother in Florida a lot but their recent attempt to visit was a failure because my DW's mother has Alzheimer's also. She couldn't make the trip and they had to turnaround. I'm now turning to the iPad and FaceTime so my DW can interact with her mother in Florida.
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I'm new to this site but have had my husband in memory care for 5 years now. Have battled dementia in some form since 2006. IF THIS IS A BEGINNING for those suffering from this disease, I can see "carefully" taking them out for dinner when there isn't a crowd expected; home for a holiday meal for an afternoon; to a social event where they will see some of their peers for a couple of hours; or even to a wedding or graduation this spring as long as they stay only for a limited time. BUT....no matter what neurology tells you, it is NOT advised to take them out, even among people they have known for years and just turn them loose for social interactions. In fact, I would sincerely advise against it. BRING A SELECTED FEW TO THEM on a regular basis. Have an ice cream cake ready to share. Sit 3 or 4 good friends round a table with the patient and talk about the old days. Bring siblings in to see them and allow them to remember "growing up" shenanigans. Have their pastor and a couple of church members come in to PRAY with them. Are you getting my drift? TAKE PEOPLE YOU TRUST....that your PATIENT TRUSTS.....take them TO the patient in an environment where the PATIENT FEELS SECURE. Will it work? Maybe, maybe not. Maybe today, maybe not tomorrow. This is where YOU will need to be flexible. I DO believe in social interaction......but.....it must be planned and monitored for the best result, designed to keep the patient feeling CALM , SAFE and SECURE.4
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Hi Jeff, just a thought regarding your breakfast times. Lately, it has been helpful for me to bring a magazine with me when we go anywhere requiring "waiting". Our magazine is Birds and Blooms with great pictures. I sit next to her and we quietly look and talk about the pictures; it has been very helpful with cutting her anxiety and confusion in waiting and then the resulting "need" to get going. So far it has worked for eating out, Dr visits, and even waiting for our truck at it's oil change appointment. Don't know for how long this will work but for now it is my go to.
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Goodlife's suggestion about taking a book along is a good one I think Jeff if your DW will attend to it. Another suggestion I have is that since your breakfast place is a regular diner and ten minutes away perhaps you could discuss the issue with the people at the diner, keep a menu, and call ahead to order for the two of you so that when you arrive the food will be ready or nearly so. It sounds like continuing to go is a respite for you and probably good for her if you can figure out a way to either cut the wait or bring something to look at.
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Such good ideas, jo124! Especially pre ordering to have the food served immediately when you get there. Hope there is someone at the diner who will be helpful with this!
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Thank you Goodlife2025 and Jo124c
I'll try that!
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CindyBum…I am pretty in the same situation as you. My DW knows that there is something wrong with her memory but does not totally understand just what. I think she would not be too receptive to me just planting her in social situations she does not understand. Her Neurologist is very caring, and I do understand what he suggests as far as social interactions, but he only sees her for a very short period of time and sees her at her best. I too get more helpful information here from all of those that live with this horrible disease 24/7……my thanks goes out to all.
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ILAlumni79.I agree with everything you have said. When my DW is in a large social situation the chatter from the group is way too much for her absorb…too much information and to quick for her to digest. She often responds with things that have no bearing on what the topic was. Later in the day she just sits down and falls asleep exhausted from all the interactions. I have noticed that when she wakes up, she is very delusional thinking I have left and now sees me as her dead father and very angry that her husband has again left her….this happens very often and very hard to deal with.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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