Loneliness and sometimes feeling isolated

EM22

As a caregiver for my spouse, who is unable to communicate, often I find myself feeling lonely and isolated. Fortunately I have help which allows me to stay active by going to yoga, reading, riding my bike and attending some social events. I have found the people friendly and easy to talk to at yoga and social events, but establishing any friendships has been difficult at best. I am honest with my situation, but I don't wear it on my sleeve, but I am not ashamed of it and feel it is best to be upfront. In general the women and men that I have met at these events tend to attend them for the social function but doing something outside of these events doesn't seem to happen. Making it very difficult at best to develop a friendship, which for me is very important to help deal with the stress of my situation. I have talked to other people, not in my situation, who have had similar experiences, however they do not live in my area.I like a variety of activities from kayaking to the theatre, so it is not my lack of interests that prevents a social outing. I am looking at attending a support group to see if that presents any opportunities to develop a social connection. Also my support group of family and friends is extremely small and they all live out of state and are busy with their lives, which leads me to be the one reaching out for communication. I don't mind doing this, but it is nice is someone takes the time to call and check in to see how you are doing. It has more heartfelt meaning for me. Finding someone to talk with or do things with has been extremely difficult. Although it may be nice to find someone who has experienced difficulty in their life and overcome it or are going through it, it is just as nice to talk about other things that take my mind off of my day-to-day situation. Maybe other people also have similar experiences feelings of loneliness and some isolation and have found solutions.

Bill_2001

Hi EM22,

The loneliness and isolation are attributes of caregiving that are sadly overlooked by most people.

"How is your wife doing?"  I get asked this ten times for each time someone deigns to ask how I am doing.

Very few people really care about how I am doing. No matter that I have mostly lost my dear wife to this disease. She is right here beside me but still nowhere to be found.

We are on our own. (See my post The Cavalry Is Not Coming.)

You will need to find coping mechanisms and do your very best to get through this ordeal. Music, books, movies, telephone conversations with friends, whatever you can do. However, none of this can take the place of the one person who really loves (loved?) us, and is now mostly gone. We are a heartbroken lot.

Of course we are lonely and isolated. How else could we possibly feel right now? Cut yourself some slack.

Like you, I stay busy as well. I am still working full time and my dear wife attends an adult day care. Busyness is no substitute for true companionship and love. My dear wife is apathetic on good days, and nearly catatonic on bad days. You and I are now devoid of a real relationship, relagated to 24/7 caregiving whilst receiving nearly nothing in return.

I wish I had an answer for you. It sounds like you are doing much of the same things I am doing to cope, taking one day at a time. I, too, am regularly disappointed in how difficult making new friends has been in this stage of my life. Other people have their own lives, and quite possibly their own crosses to bear.

Hang in there, and use every tactic you can to cope on a daily basis. You have the right feel lonely and isolated. You (like me), are in the process of losing the most important person in your life. The love of your life. Your soulmate.

I am going to go into the other room and cry for a bit.

EM22

Bill,

Thank you for taking the time to reply. As I look on the message board I see other topics get views in the hundreds and sometimes topping 1,000. Like you say, this topic is sadly overlooked by most people for one reason or another, I don't have the answer as to why. I don't even get the questions "How is your wife doing?" as the people we thought we had as "friends" scattered to the four corners when she was diagnosed. As the saying goes sometimes when the wine stops flowing the people get going. We found our so called friends were actually just acquaintances. Happy to be around for the good times but no interest when things went south.

I use music, books, movies and yoga as some coping mechanisms. But they are not a substitute for human contact. Telephone conversations with friends are few and far between. People are  busy with their own lives or maybe don't know how to respond to the situation. And now with texting having a live conversation is even more difficult.

Making new friends has been extremely difficult as I find most men and women are focused on finding new partners and not friendships. I continue to try new avenues, joining book clubs, biking groups, kayaking, but have found most are doing this for the activity and not to make new friends. The majority at this point in their lives are established in their relationships/friendships. Our situation puts us in a small unique group that makes it difficult to build those friendships.

I hold out hope that there is still the possibility to establish friendships. Social contact is so important and can be so difficult to achieve.

KathyF1

EM22, I can so relate. The loneliness and isolation is for me the biggest struggle. We’ve lived here 8 years. My DH started showing symptoms 3 years ago. Like you, friends we thought were friends were actually acquaintances. It’s hard to be around people with Alzheimer’s and I think most people just don’t want to make the effort. We do have one couple who have remained faithful. But even with them our gatherings have dwindled to about once a month. I do whatever I can to be around people. Today we drove 2 hours to see his uncle in assisted living. Next week I have some old friends driving to see us for a week (these are very special friends). But as a rule I am so lonely most of the time. Church is a good source for me to be with people who truly care. But even so, true friends who are really there for you- hard to find. I empathize greatly with you. My only advice is to do everything and anything you can to be around people. Prayers that you’ll find some true blue friends.

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emmamom

My neighbor also feels very lonely because of his wife's dementia. I often read about loneliness, dating or long-term relationships, for example, on https://betterme.world/articles/mental-health/relationships/ and sometimes I talk to him about these topics. I like spending time with him because he is a very intelligent and well-read person. I have great hope that he will soon become happy

Kibbee

Cecil J…what you said.  Missing the freedom to do things we used to do.  So true.  This summer we’ve had friends travel to Alaska, Australia, Italy, Paris, the Caribbean and Nepal.  I’m happy for them and have enjoyed seeing the photos and hearing about their adventures.   But it is hard sometimes.  It’s not necessarily that I want to take long trips to such distant and fabulous locations.  It’s just knowing that travel anywhere for DH is no longer an option.  And for me, finding a caregiver who will do long days or overnights is such a challenge (and costly) that getting away for a day trip or weekend is a rare occurrence.

What’s the line from Johnny Cash / Folsom Prison Blues?   “Those  people keep on moving, and that’s what tortures me”.

Ed1937

"Missing the freedom to do things we used to do. ". I am past that part now. After leading a sedentary lifestyle for a while, I'm no longer able to do the things I loved to do. I am getting a little more exercise than I did, but gaining that lost muscle back will take time. Especially at my age.

It seemed I was always building something. Doing manual labor. People would ask me if I didn't ever sit down. Now I miss the ability to do the things I enjoyed. Maybe if I live long enough I'll be able to do it again. Maybe.

MaryG123

I’m not a particularly social person, but when I retired I realized that I needed to make some friends.   When I was younger, I hiked and kayaked with local Meetup groups, but I’m not that active anymore.  So I joined a garden club and started showing up for the community pruning/planting projects, which are usually attended by just a few people.  After several months, two others invited me to take bridge lessons with them, and now we’ve been playing once a week for about a year.  It still surprises me me how much I enjoy it.  So my advice would be to pick an activity you like and find others who do too.  Then just give the friendships time.  Inviting a few people to your home for an afternoon snack, cards, or a board game, may result in reciprocal invitations.  My mother often told me, “To have a friend you need to be a friend.”  But it’s hard, especially with our complicated lives.  

Btw, my DH has taken up pickleball since he retired, and has made what he considers friends on the court.  Many of them have similar health issues so he doesn’t feel too embarrassed.

John_inFlorida

As many have said, missing the freedom to do things is really getting to me.

It is lonely and isolating and for some reason people only ask about the person with dementia, not the person doing the caregiving.

Just sitting at home all the time is wearing on me

Just venting

Kibbee

I hire a caregiver a couple times a month specifically so I can get out of the house and socialize with friends.  It’s not a lot of freedom time, but even that small amount gives me a much-needed mental break.  I consider it money well spent.

jfkoc

The lonliness that lingers does not seem to be effected by activity. It comes quitely when I realize that the person I want to share with is no longer.

Dio

jfkoc wrote:

The lonliness that lingers does not seem to be effected by activity. It comes quitely when I realize that the person I want to share with is no longer.

Ditto. Ditto.

Sadderthanever

Nobody “gets” it who hasn’t been through it. They can’t really connect with you on an emotional level and responses tend to be hollow. It’s like people not knowing what to say to a bereaved person and they tend to run away because they feel awkward or embarrassed. And the fact is we are in mourning, grieving the relationship we once had and unlike an actual death where mourning can sometimes be a year or two, this one goes on for an undetermined length. Half of us is elsewhere when trying to connect or really explore new activities. We remain hurt, and angry as well as lonely. I have no answer except that all things are passing.

storycrafter

Social contact. I always knew it was important. But I didn't realize until the pandemic hit how fundamentally crucial it is for overall health. My husband's life didn't change much at all and he was just fine with the isolation (I am enough for his social needs) But my life surely did change!

That first year after it hit was complicated by being a major caregiver for my dad; his increasing dementia and further difficulties caused by the extra restrictions at retirement communities. He lived about an hour away in an independent living apartment. A couple months before he died, hospice decided he no longer qualified for their care. The extreme isolation, other than the company of hired caregivers, directly affected my dad's decline and he died by the end of that year (I still feel devastated I wasn't with him when he passed; have been unable to let go of deep regret I didn't get there in time; complicated story I won't go into).

It was last winter, about a year after my father's death, that I realized I was sinking too low, home alone with my husband who has FTD, and needed some help. I began reaching out by attending online meetings and reading more on this site. Fortunately things finally began to open up again, but the damage was done. I found a grief counselor familiar with helping families dealing with dementia. She's been helpful and I'm improving.

It takes a lot of effort to keep ourselves active and interacting with others. It requires energy that we might not always have. This site helps fill some of the gap and is a significant part of my personal support system.

Thanks for the topic. I wish you well....

AnnieTB

Wow. I have not looked at this message board for a year or more, but this one really spoke to me. I am 64, my DH has been diagnosed for several years with Dementia, but it is moving so slowly, which I guess is a blessing. But I too have been so active; kayaking, biking, hiking, traveling, and now I feel that will all end. He is 5 years older and was never as active as I, but now he doesn’t even really want to go for very long walks, and he gets very jealous if I do small outings with friends, even though he quit the Mind Movers social program that was recommended by 2 doctors. Everything I do is for him but he can get so resentful. Just had to stop driving this year and says to me ‘you do whatever you want to do.’ I wish. Complicating matters is that I was always the provider, organizer, etc. so we didn’t have the best marriage. I was looking forward to retirement, but now I feel like I’m home (feeling alone) for the long haul. Sorry for the rant.

Iris L.

AnnieTB wrote:

 He is 5 years older and was never as active as I, but now he doesn’t even really want to go for very long walks, 

 

PWDs don't have much energy.

 

and he gets very jealous if I do small outings with friends, 

 

 

Some PWDs become anxious or scared when alone because they don't know what to do, they may exhibit shadowing.

 

 

even though he quit the Mind Movers social program that was recommended by 2 doctors. 

 

 

PWDs lose initiative.  You just have to take him there.  If resistance is strong, he is past the point of that type of socialization. 

 

  

Everything I do is for him but he can get so resentful. Just had to stop driving this year and says to me ‘you do whatever you want to do.’ I wish. 

 

 

He has anosognosia, he is unaware of his limitation and why he is no longer safe driving.

 

 

 

Complicating matters is that I was always the provider, organizer, etc. so we didn’t have the best marriage. I was looking forward to retirement, but now I feel like I’m home (feeling alone) for the long haul. Sorry for the rant.

You will have to seek a balance.  What PWDs need will be the opposite of what you want.  IMO, PWDs need to live in a bubble, and live a Groundhog Day life. I know you won't like that, it is not a usual life.

Iris

Sally56

I totally understand loneliness and isolation making new friends is difficult to me also. Seems no one needs or has room for friendship. I do have one good friend but she is busy with her young children. I have sisters but they are far away. I try my best to get out and do what I want. I try to stay active but I have to take care of all things. It's hard for sure.

Anna2022

It hit me this morning that DH is slipping away bit by bit. He mentioned that he was awakened by my snoring ( something we've joked about for years) and said that he has never heard me snore before in his life. I was just silent but the sharp awareness of what this disease takes from us hit hard. So many memories of a life lived together. I guess the memories created in the future will be mine alone. That is a sorrow I knew was coming but had hoped to delay.

AnnieTB

Iris L. 

Quite the smack down. 

Iris L.

Annie, nothing I posted about PWDs is untrue, re: no energy, no initiative, poor socialization, needing a bubble and groundhog day.   I'm sorry you believe what I wrote is a "smack down".  I meant it to be informative. 

BTW, I have no energy, no initiative, no socialization, I live in a bubble and with  a Groundhog Day life.  I am isolated too.

Iris L.

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trm

Thanks for his reply.  This is exactly how I feel!  I lost my spouse; yet, she is standing right here.   Sometimes the daily tasks of living with someone in another reality are horrible.  I can't understand the questions.  I can't understand the anger.  I can't understand why I became the devil.  I also work full time, at home, and the two realities crash.  I just started reading the post here and it helps, a little, to know I am not totally alone!

AnnieTB

Iris L. I’m sure it was not your intent. It was just a particularly bad day and I honestly wrote more than I should have. I do read a lot, attend a support group, have a dementia specialist through the ADRC. I feel like I’m getting a second Master’s Degree, this one in dementia and caregiving, but then I have a day like that and I’m at the bottom again. I didn’t mean to offend either. We’re all doing the best we can.