remedies for isolation?

ninalu

Hi there, 
7 years into my journey as the only daughter, one-time primary caregiver of a parent with Alzheimer's, I am looking up from my life and feeling like the grieving is just going to continue and that I need some new coping strategies to endure this triathlon of Alzheimer's. I am too isolated and that piece makes me concerned for my own health. Also, I am tired of being sad. Is it possible to experience joy and levity while going through this? I'm turning to you experts for some tips. 

For a while, pre-pandemic, I was making significant effort to connect with very busy friends (most of whom are married with youngish children) - and this was working out ok, although as an unpartnered, childless person, this wasn't enough for me. I love my married, partnered friends to pieces but I don't fit into their current lives or conversation topics easily. Even then I was needing to find some social outlets and connection that was more uniquely suited to the life path I've taken. 

During the pandemic, as the sole care-giver of my mom with everything in lockdown, mom and I both became too isolated and my only social connection was my job (online video meetings around work topics.) And of course, caring for her was hands-on and very connected, loving;  but it didn't work well because of how much my job demanded of me and her needs were more than I could do alone. I should admit up front that I took myself off of social media deliberately - I do not find the connection I need there. 

Now my mom is in a SNF and I'm still nearby, working remotely. I have more space to balance out my life, but I'm at a loss of how to start. I'm still grieving the weekly and monthly losses that Alz brings. I'll be grieving, I've come to accept, for the duration of this experience. And I have to make space for this amidst my desired re-entry into life.

I'm also seeing how Alz has changed me. I wouldn't necessarily say "changed for the worse", but I am more contemplative than I used to be. I have less physical energy than I used to have. I spend more time feeling sad than I used to. I'm quieter than I used to be. Some of this is likely the ongoing grief, but is it even possible to emerge from isolation while in this state of mind?

Bottom line, I'm a caregiver at risk and I need to try to help myself, but don't know how to start. The risk is isolation exclusively (I exercise and do other things that I need to - e.g. regular check ups etc.) My therapist is wonderful but doesn't really GET IT. My friends, with or without living parents, don't get it, for the most part. The only friend who I find easy and natural to be with is one who lost a parent to dementia. He knows this path and he's not pushing me to somehow "move on and get over it." 

Is there a manual for us child or partner caregivers, e.g. "here's how to reclaim your self and your life" ? I partially kid, but I'm seriously at a loss. I look up and feel like I have no idea how to get back to a life that feels like my own. I feel like a stranger in a strange land. 

Candid feedback welcome. Maybe I'm feeling something you all have felt and the counsel is to simply, "take it one step at a time." I don't know. 

Thank you for reading and for your wisdom on how to help myself. 

M1

Ninalu, I worry about this too--not so much now, but I will be at serious risk for the same kind of isolation once my partner dies (15 years older than me).  I will have to work hard to put myself out there.  The thing that appeals to me is volunteer activities--I'm thinking at our local library, for example, and I'm sure there will be others that come to mind.  I wonder if that's a way for you to start rebuilding.  I have always found that nothing takes me out of myself like doing something for others, so maybe that's a place to start?  I wish you luck and fair play to you for reaching out.  Right thing to do and right place to start.

ninalu

@M1, thank you. Volunteering does appeal to me. This is a great idea and giving back is something that lifts my heart and offers different types of connection. I'll reflect more on this and how I might do it.

harshedbuzz

ninalu-

I sounds as if you are experiencing 2 very common things- the realignment of friendships as friends marry and breed leaving you less of a priority (albeit temporarily, although it seems forever in the moment) and the emotional isolation of being a dementia caregiver (exacerbated by doing it solo and before any peers have had real experience with this particular demon) at the same time. Both of these at once would be a real doozy. It's no wonder you are having trouble finding your feet.

It also sounds as if you are doing a lot of the right things in terms of healthy self-care. It might be useful to read up on the concept of ambiguous grief as it applies in mourning the loss of a person who is physically still among us which is complicated.

In terms of putting yourself out there socially. M1 made a terrific suggestion. Volunteering is a great way to meet others. Another way is to pick up a new or established hobby or activity that offers social interaction. One friend I know got seriously into diving and has a roster of dive friends she travels with. Another friend joined a weekend cycling group that meets to ride and then does a lunch or brunch after.

HB

ninalu

@HB, thank you! I will look into 'ambiguous grief' and options for an activity group.
You're right that it's a double-scoop; married friends and caregiver situation. 

I am pretty sure that I don't need a lot; just some small change that I can begin to invest in and build on. 

Deanna_M

Ninalu- 

You mentioned having a therapist, which is terrific. I sought out a therapist to help me sort through some tough family dynamics associated with being the primary caregiver of my mother. I was very fortunate to find a therapist who specializes in challenges associated with Alz caregiving. She had been a caregiver to a relative with Alz, worked in senior healthcare for years, and then decided to pursue her counseling license. Needless to say, she "gets it." While we talk about the caregiving challenges, I have found that she is helping all aspects of my life and it is so liberating it is to finally talk to someone about every last awful challenge (I tend to sugar coat or gloss things over when talking to friends and family).

I wonder if there are other therapists out there that specialize like mine does? I am not saying that all you need is someone to talk to, but perhaps a therapist who has a deep understanding of caregiving challenges could help you develop a road map to emerge from isolation. 

ninalu

Thank you, @Deanna_M, I've wondered about this too. 

I've asked my current therapist how do I know when I've become too depressed, or too sad, or too numb for too long -- vs. "normal" grieving and caregiving? It's an open question between us. She gives me a lot of affirmation but I don't know if she would be able to pick up on warning signs for me - possibly this is due to our therapy being exclusively remote (it all started during pandemic times.) I do need help knowing what's typical vs. atypical for this situation. I've had some pretty dark days sorting through emotions and experiences, but maybe dark days are common and nothing to be afraid of. It'd be helpful to know that I don't have to be afraid of my own thoughts and feelings. I do sometimes feel so totally alone in them. I am planning to follow up on learning about ambiguous loss, as HB suggested. 

I've wondered if dementia is so unique - as far as human experiences go - that it requires a special type of support, experience in a counselor. 

Mint

Ninalu this is a good question.  I have had that same thought recently that I feel like a stranger.  I retired about 10 months before pandemic so that outlet is gone.  Don’t have any answers.  Hope you and I both find our way through this.

I’m no where near a therapist lol but to me seems like you are doing ok.  You are taking care of yourself, trying to find solutions.  When I would worry is if you lose interest in things.

harshedbuzz

ninalu wrote:

I've wondered if dementia is so unique - as far as human experiences go - that it requires a special type of support, experience in a counselor. 


Absolutely it is. 

When my dad was initially diagnosed, the first thing I did after we swapped me to be agent on mom's POA was to get her a psychiatrist for medication management and a talk therapist. The psych is just terrific and mom still sees her but the therapist was sort of a dud and mom didn't get much out of her visits. 

What helped more was a IRL ALZ support meeting. Dad's gone and 3 years on she is still attending, sharing and processing her experience. She (and I) got more out of this than her trips to the therapist. Pre-COVID the support even met monthly for a lunch during which they talked about everything but dementia. I'm hoping that starts back up soon.

HB

terei

Start volunteering:  foood bank, library, community foundation, church, helping youngsters read etc.  Some communities have a list of non profits that need volunteers

jfkoc

Reclaim yourself...

In thinking about this it occurs to me that we are no longer ourselves....at least the selves we were.

This disease plus Covid have left us quite different. 

My solution falls in line with the suggestions to volunteer. I made my way to the art museum where I became a docent. My education is in art   history so that was a good match. What I did not expect was the benefit from doing something with strangers. It truly was a fresh start.

You will find your way!

mommyandme (m&m)

I think the “Meet-up” app has so many options in finding groups of people in my area, with similar interests. 

My problem with volunteering, even watching grandchildren, is I’m so depleted of giving that the idea exhausts me.  I just want to do for me me me when I have a break.  

Sounds selfish and feels that way too.  

jfkoc

I'm with you. I want to spend time with things that fill me up!

live in daughter

I agree. I started volunteering at a Farm that produces food for local food banks. Have met people from all walks of life- interesting to hear their stories. I can share my Mom's story or just listen to learn about others.

MimiMinder

I don't have any magic solutions, but I discovered two new to me sports activities - stand up paddleboarding and pickleball. The SUP lets me be out in nature and enjoy being on the water when we have good weather. Pickleball takes all of my concentration to get my middle aged body and eyes to work together to hit the ball over the net. I played recently and for 2 hours I did not think about my mother or dementia. It was just see the ball - hit the ball. Great therapy.

I also did pre-pandemic in person counseling and worked through an old book called The Grief Recovery Handbook by John James and Russell Friedman. The whole concept of anticipatory grief was one I had not explored before.

Another thing that helped me was finding a few dementia buddies on this website. I didn't want to spread myself too thin, so I haven't reached out to all of the fabulous people whose responses resonate with me. But I do have two ladies who are my rockstars. There is a level of trust and familiarity and it has helped so much. Possibly you could invite someone or several someones to see if you want to engage in deeper communication either on this site or moving offsite to texting or chatting or video visits if that feels comfortable.

I get the feeling that you might not yet be AARP age, but I have found some of their programming wonderful. You don't have to be a member to take advantage of their extensive on line offerings. Today I am attending pilaties. Later this week there is an interative session on using improv skills while dealing with dementia and next week there is a lecture on the rise and fall of the Berlin Wall.

It sounds like you are doing all of the right things to take care of yourself mentally and physically. This is a long, tough road, but it is easier when you know you are in the company of many others. Take care and know that you are being thought of!

ninalu

@Sayra, HB, terei, m&m, jfkoc, live in daughter, & Mimi Minder - I wanted to loop back and thank you. 

This process of reaching out will be a longer term project for me (one step at a time, grin) and I feel better able to take the next steps, having your great input and life experience as a guide. 

Mcjdrh

This pole This post was so well constructed and on point it touched me very deeply it's exactly how I'm feeling these days and and I'm facing many of the same issues...thank you.