What helps Caregivers!?


#1

I want to help those families that are walking the same path my family walked. I don’t know what to do. How to help. I never knew or felt so helpless when i see others suffering this same hellish disease my family lived through because of me.

I can say some pretty words. But it, or seems NOT enough. When i was growing up. My family would bring casseroles to recovering families of illness. Just to say. “Hey, someone here cares” but the secrets and shame surrounding schizophrenia keep this a hidden nightmare.

So, if asked. What is something you would love to receive …just to comfort you? (after a day of battle) fighting your loved one? (I would love to ask my parents, but i can’t)

I just need to know your answers.

Thank You


#2

Here’s a short list for me, 100% my own opinion. Not in any order. Much of this is based on being local and close to me physically. I can’t guarantee these things will work for others. Think of this as a “wish list” of things I wish people would do for me. These are also things I would do for others (and frequently have). As a case manager, I love doing random acts of kindness for my clients. I’m always on the lookout for the opportunity to do something nice.

  1. Donations to my GoFund account. (Raised $40 in 30 days)
  2. Sharing my GoFund page on social media with some nice words of encouragement
  3. A nice conversation about anything BUT SCZ. It makes me feel normal.
  4. Someone asking questions to learn more about SCZ in a gentle, kind way. Showing concern for my daughter or me warms my heart.
  5. Offering to do something nice - a visit, lunch, flowers, a gift card for a massage, epsom salts, nice smelling candles, or tickets to the movies, or some other nice gesture. Money is often very tight so treats don’t happen often. Gift cards never go unspent in our house. Even $5 at Starbucks is appreciated (my daughter loves hot chocolate from there).
  6. A card for my daughter to make her smile (something silly or with music but NOT a get well soon card since she’s not “sick” in a traditional way)
  7. A card with encouragement for me - something I can hang onto for the dark days to come
  8. Sharing a nice song or a picture/meme from the internet that will lift my spirits or make me laugh is always welcome
  9. Taking the time to simply say, “I’m so sorry for what you’re going through. I know I don’t understand it all but I really hope things improve.”
  10. Words of kindness like, “You’re a great mother - you’re doing a great job. I admire your strength, your dedication”, etc. Words of encouragement, a compliment, they mean so much.
  11. Try not to expect a lot of emotions, but also don’t feel uncomfortable if a lot of emotion is shown. Let the person know it’s okay if they cry or can’t control their emotions. Some days can be hard in either direction. Some days the emotions are so close to the surface, others I’m just numb.
  12. Ask if there’s anything you can do to help. I might have something, I might not. I will probably say no thanks out of politeness, but the words mean a lot just the same. If I do ask for something, be prepared to do whatever it is (it won’t be much likely).
  13. If you’re handy in some way, make something. A handmade gift would mean the world (and likely bring on tears).
  14. Just sit and listen and ask questions. Get me to talk and open up - which is really hard because I don’t want to be a burden to anyone. Let me know it’s okay to talk to you, to share what I’m going through, and show genuine interest in what I’m saying. Avoid offering advice or try to solve the problem (since there isn’t a solution and I’m already doing all I can so that will just make me feel worse, or feel like I have to defend against it).
  15. A stuffed animal for my daughter - she collects them and can’t ever seem to have enough of them. The softer and cuter, the better.
  16. Random acts of kindness show you really care. Put a little thought into it and then just do something nice without asking. Be sure to include a card or note so I know who it’s from.
  17. Books for myself or my child. Amazon gift card so I can buy ebooks to read on my phone during the long waits at doctor appointments.

I hope this gives you some good ideas.


#3

B4nAfter,

I think when you share your experiences, your thoughts and what your parents did to help you, you help us all tremendously.

One of our biggest struggles is trying to understand the experience from our family members’ perspectives.

We want to help them on their journeys, but often we can’t tell when we are helping from when we are impeding.


#4

I am extremely fortunate to have a strong network of friends and immediate family. For the first few years we did not talk about the illness—denial of sorts. If we don’t talk about it maybe it will go away?!? After a decline a few years ago, I began to talk about it and to my surprise my friends were supportive. They do not always “get” what goes on, hence this forum, but they listen when we go out of coffee or something stronger :slight_smile: .

In the winter I do craft type projects, watch sappy movies. When the weather is nice I work outside in the yard and garden.
And you might not realize it, but your parents might like to have this conversation with you. Because the best gift of all is spending time with my son on his good days.


#5

I got the feeling that maybe her parents possibly weren’t alive anymore? Or that something had happened? But didn’t want to pry into that.


#6

You are all amazing!!! No, my parents are still alive. But old now. I never bring up the past. My parents are finally at peace with what happened to me. (and in a way so am i).

My father literally fought the devil and beat him. I try very hard to never let the pain and anguish of the past affect the lives of my parents now. My sister and brother and my dearest best friend…are my “go to” when i need a sounding board.

My Father will be 76 this year. My mother…will be 74. I now have assumed a more of a parental role…for them. I am fiercely protective of my parents. They have suffered enough because of schizophrenia.

They are able to go on cruises twice a year now. Where once, they weren’t able to travel. (with me being soooo sick) they are now FREE. :slight_smile: I plan on keeping it that way.

So “Rainbows and Butterflies” talks? LOL. YES. We talk about…HOPE now. Vacations they go on . Renewing their vows…on board ships and in resorts. Its been more than 50 yrs they’ve been married.

They again dance in the kitchen together. They take walks…and hold hands. Finally, my mother’s tears…have dried. My Father’s …pain…is gone. Its finally over now. My family is healing. I won’t let ANYTHING…disrupt it. Not now. Never again.


#7

No…my parent’s are alive. :slight_smile: I want to keep it that way. NO more stress. I want them to be happy. So I don’t talk about…the past. I put my family especially my parents…through hell. So i just won’t bring up the past. Its sooo painful…to “remember”. So I try hard…to focus on the FUTURE> our lives only go in one direction. Forward. Not back. :slight_smile:


#8

I must say…i LOOVED Your “wish list” …ahhh…if only I could be a fairy God mother. And make them all come true. I would.

I understand about stresses. And money being tight. God knows…i understand. Oh do i ever!!! I do hope a “guardian angel” from …somewhere up above…will see this list. and make a few dreams (and wishes) come true for you.

I do believe most people do care. (there are those few that dont) but MOST do care. So, my prayers go with you. (and your daughter)

I know the road will be hard…and tedious. But…you were BLESSED with a child. That made you into a wonderful devoted mother. I hope and pray…this day has found some giggles and smiles…from your child…to lift your spirits.

GBU!!!


#9

Gardening (container, we have a patio)
Paint my nails
Time with bird/dog
Walks
Crochet
Dialog about anything other than scz
Music
Candles!!! (The smell…instantly lifts my mood.)
Orchids (the plants too)
Collecting trimmings from other houseplants to root my own
Coloring (those adult, complex designs: “Mandalas”, etc. VERY stress relieving

What I haven’t been able to do, but would LOVE to do again:

Quilting
Sewing
Embroidery

And the following…some day I would like to be able walk about without worrying over someone having a head trip over the locations/drive there/food/store/clothes/smells/people/heat/cold/etc…

Then I could go to my favorite haunts:

Thrift Stores
Museums
Art Galleries
Farmers Markets
Live Bands
A long, hot bath
Beach
Fine dining with husband

Okay…so this is my “self help” list. We move frequently, and are really just the four of us. Friends don’t “move” well I’ve discovered. I put this together over years of therapy and self discovery. When I worked (social work/crisis counselor/behaviorist for autism/speech/non-verbal/deaf) we regularly discussed at our weekly team meetings what each of us did for relaxation. Something DIFFERENT than the world we worked in. It helped!!

Still does.


#10

Dear @B4nAfter, Your presence here and your support are really helpful and kind.

Your love for your parents is healing and beautiful.


#11

That was a solid good list! Lol I’m copying this for next time I wonder how to help myself or care for myself.


#13

Found this today…read through as one example is of caring for scz.


#14

I appreciate someone wanting to spend time with me AND my son. We go out every weekend, but it is always just the two of us. Just giving us some ‘normal’ time is the best gift.


#15

@Vallpen
I understand.

My sister used to clear her work schedule (on days I was … “normal”) …because she missed me.

She was lonely for normal conversations. We didn’t get “normal” more often than not. So I understand.

There are places where you can find supports. NAMI. has a lot of ways to connect you to others in the same situation.

My heart goes out to you!!!


#16

Hi Valpen, I can totally relate, it is always my son and I going out together alone, too. His sister used to join us sometimes, but lately he has not wanted to see her, she makes him get anxiety, he says. We hope this passes soon. It would be nice to have some company on our outings, my husband, not his dad ,wants nothing to do with him, and complains I talk too much about him. My son and I do get together nearly everyday tho, so I too am grateful for the good days we have.


#17

What helps caregivers? For me, it was spending time out of the house with girlfriends or my mom. Shopping on Saturdays, an occasional dinner out, bookclub. Also going to an exercise class.


#18

Yep @irene, this:

my husband, not his dad ,wants nothing to do with him, and complains I talk too much about him.

is exactly my situation as well. I also see my son almost every day, tho most days it is just for less than an hour.

We have made a change in the last year where I DON’T come to see him one weekend day, which gives me some time with my husband and some time to recharge.


#19

My daughter had an episode about a year and half ago. She has since recovered. She likes to cook, bake, paint, etc so every now and then, I get a slice of her cake, nicely decorated and brought to my workshop. The smile I saw on her face when she saw that I liked her cake is one of the many wonderful moments I treasure.


#20

@Chong sounds like you have a lovely daughter!!!


#21

It is good to focus on the future and not live in the past. But here is the funny thing about parents, even when we are heartbroken we still like to know what is going on with our children. It may be tough sometimes to hear, but it is what we signed up for when we decided to become parents.

Conversations with my son are not rehashing the terrible past. Sometimes they are just simple references to something that happened and how he feels about it now…“Remember when ----happened, I was in thinking this this ------.” And some of the stories are even humorous.

The key is these conversations are not about what we are currently going through. They are however part of the tapestry of who we are today.

But if you are thinking recalling your past will trigger something in you that you cannot handle or your parents do not wish to discuss, do not do it.

And a final thought, because many or our loved ones are at a point where they are too sick to share, as @hope said, your sharing with us is helping other families. So thanks!