Caring for Family Members: A Thread for Sharing Experiences, Talking, Friendly Feedback, Kind Words, etc.

Dear users, dear authors,
many of you have cared for a family member—perhaps for quite some time—or are still doing so. I think that’s very brave and definitely deserves our support. I’m starting this thread so you can discuss this topic with each other, if and when you’d like to.

Of course, you’re also welcome to join the conversation here:
Being there for each other online on Crazypatterns

I’m bumping this thread again so you know that you can also talk about these topics here in the forum, if you’d like to. You don’t have to stay silent or withdraw if you’re not feeling well or if you’re caring for a family member.

Hello, my name is Renate and I’ve been caring for a family member for years. Right now, I’m really struggling because my mother’s dementia is getting worse and worse, and as a result she has intense crying spells where it’s impossible to calm her down. She also refuses any help and won’t let anyone but me near her. I think it would be good if we could talk about this a little here and maybe find the courage to keep going. 
I wish everyone a wonderful start to the new week. 
Best regards,
Renate

Hi Renate,
It’s great to see you joining this thread. It’s wonderful that you’re caring for your mom. I hope you can find a little time for yourself today so you can unwind and relax.
How many years have you been caring for her?

For 6 years now. First my dad and father-in-law, now my mom. Right now, it’s really taking a toll on me, and I feel like giving up. I also work full-time, and my husband has rheumatism and was unemployed for a long time. But you mustn’t give up. 

See if you can find a support group in your area for family members of people with dementia—it helped our mother, my sister, and me a lot when we were caring for our father, who had dementia. Unfortunately, at some point you have to place these patients in a closed care facility, because in the advanced stages they need 24-hour supervision, and as one person, you simply can’t manage and keep it up on your own. The doctor also said that otherwise, it can happen that the caregiver bites the dust before the person being cared for—those were the doctor’s exact words. I still say it today: Thank God my father was allowed to pass away after only four years, during which this disease caught up with him in giant strides. He no longer recognized anyone in the family except my oldest daughter—and even then only sporadically—even though we all visited him regularly and told him who we were; he’d just say, “I don’t know you.” Only once, when he was already in the nursing home, did I witness him have a very brief moment of clarity, namely when I told him that his Michl, as he called my middle daughter, was having a baby. His eyes lit up, but unfortunately it wasn’t enough for him to process or understand it. Six weeks later, he left this world forever. That was all 26 years ago now.

Love, Inge

Dear Inge, thank you so much for your message. My mom has been in a nursing home since February. Unfortunately, she won’t accept the care they provide there. She gets loud and yells at other patients, or calls me 10 times a day, crying, to tell me she wants to jump out the window, that she never wants to eat there again, and that she wants to leave. She’s at a stage where she still remembers some things but just doesn’t understand others anymore—which makes it all the harder. Also, the fact that she can’t build trust with anyone doesn’t make it any easier, unfortunately—neither for the nursing home nor for me. We’ll just have to wait and see how things go over time. But it’s good to talk to others who are going through—or have gone through—similar experiences. I hope you have a wonderful day today. Best regards, Renate

Renate, your mother’s current condition is completely normal—my father went through the same thing. Back then, it was really tough, and we had to talk our mother into letting Dad stay where he was, because my mother was also severely mobility-impaired; she wouldn’t have been able to keep up with him if he’d run off again. Fortunately, we have three brothers who would give our mother a good scolding when our words no longer worked. I know it’s a very difficult learning process, but unfortunately, it’s only over when the patient has to leave us for good—it sounds harsh, but that’s the reality.
The bright side is that I see my father’s influence shining through in some of my grandchildren. One of my nephews is the spitting image of him—so these beloved people are never completely gone, Renate.

Love, Inge

@Renate and @Inge:
You’re both very brave.

Josefa, thank you, but whether it was bravery in my case, I really don't know, because when my father developed Alzheimer's, I had already been through an odyssey of illness myself. On top of that came the divorce, which was a war of the roses at its finest, stories similar to the film of the same name, with attempts on my life and a rape, because if you survive that, you can only come out of it stronger thanks to therapy. Besides, I still had to take care of my three little daughters, as they were at the time; I really didn't have much time for myself. My own breakdown only came years later, when things had calmed down. Thanks to my current husband and my family, I got through that well too.
My daughters still say today, Mom, you actually deserve the Federal Cross of Merit, :-) I can only laugh and say, kids, what I did was really what every good mother does: stand in front of her children like a lioness and fight for them.

Best, Inge

You have my admiration. :-)
It’s great to have you here.

How’s the caregiving going for you right now?

I’m bumping this thread again so that family caregivers know they haven’t been forgotten.

How’s it going?
If you’d like to share something, feel free to do so anytime.

The news has reported that people in need of care and their caregivers are the forgotten ones of the COVID-19 pandemic. That’s also why I keep bumping this thread, even if I’m the only one posting here right now.

You haven’t been forgotten.

I’m bumping this thread again.

Would you like to share your story?

I’m bumping this thread again so it doesn’t get forgotten.

I’m bumping this thread again and wish all caregivers and those in need of care a pleasant Advent season.

Merry Christmas to all caregivers and those in need of care.

Happy New Year to everyone in need of care and to all caregivers.

I’m bumping this thread again.

Are you all okay?

Today we took a really realistic look at the world .... and applied for a care level for my husband. For almost 2 years now, we’ve been thinking it was all just temporary, but looking at it quite soberly, it seems different.
We’ll see how it all goes. We did care for my mother and my parents-in-law before, but that was years ago, back when it was still called a care category.

You’ve got this. I’m keeping my fingers crossed for you.

How are you all doing right now?

Everything is the same here; we’re now waiting for the medical assessment team to visit.

I’m rooting for you.
Would you mind sharing how it went afterward?

Thank you, and yes, I’m doing just that.
First off, I can already say that you obviously need a lot of time and patience. It took quite a while for the insurance company to even respond, and now it seems like it’s going to take a while again for someone to schedule an appointment. But to put everyone’s mind at ease, they write that it doesn’t matter at all—what counts is the date the application was submitted. It used to be much faster.

You’ll get through this and do a great job.

Here’s a quick update and some tips for future family caregivers: Develop a thick skin and set aside plenty of time—looooots of time!
I’m not sure if some staff members are just pretty scatterbrained or if there’s a system to it.
In March, the medical service prepared the care assessment for my husband; everything went smoothly—good. Then, in May, we submitted our first application. The response took a good two weeks again, and they announced a visit from an assessor from the medical service—who, of course, didn’t have any immediate openings either.
What do they actually think could have changed in those few weeks? Spontaneous healing or some other miracle?
Oh well, I’ve got thick skin and plenty of patience. The assessor came by; it went quickly, and of course, it was approved right away. Great.
A week later, the letter from the long-term care insurance arrived… rejecting the application, with the assessment report showing the positive decision attached. Huh??????? So I called again, sat through countless hold queues until someone in charge picked up, and yes, it was a mistake—the correction will be sent as soon as possible. *rolls eyes*
Bottom line: It works out. Payments are made on time, too. But getting there takes a while.

Hello, it saddens me to read how many people feel overwhelmed by caring for a family member.
Why? Because as a community caregiver, I do this professionally—I even completed additional training to become a dementia and geriatric caregiver. There’s extra financial support available if you accept help, which takes some of the burden off the caregivers.
But how does it work out? Not at all, because families hardly ever accept the help. That way, people could go shopping, see the doctor, or do whatever else they need to do in peace. The excuse is always the same: the person being cared for doesn’t want it.
People just have to get used to it at first—then they’ll look forward to the day I come back.
I go for walks with them, take them on trips sometimes, or play games with them.
All I can say is: Accept help before you wear yourselves out!

I’d like to bump this thread back up and let all caregivers and care recipients know that they’re an important part of the forum community.

How are you all doing with this topic right now?

My goodness, how time flies! We’re almost old hands at this now and definitely more experienced.
Things have settled in quite well here; we’re currently doing a little remodeling again. After installing a second handrail in the stairwell last year, we’re now equipping one of the bathrooms with a large, walk-in shower. The other bathroom does have a shower, but it has a traditional, raised shower pan, which is slowly becoming a problem. On top of that, there are little things everywhere, like grab bars, raised toilets, and so on.
The worst phase—with all the noise and mess—is now over; the tiling is already done, and I’m the mopping world champion—all that’s left is for the plumber to finish up the rest.
But that’s exactly the point johansi brought up last year. You can never get the kind of personalized care support you actually need—you can only organize that in a private setting because it has to be incredibly flexible in terms of time.
That’s why I can totally understand families who’d rather just do everything themselves.
Personally, I spread the workload out a bit—I do most of it myself, but I also get some outside help;
it works out. Some days I realize I’m not 25 anymore, but I think everyone feels that way sometimes, even without having to provide care.

@Veronika,
You’ll get through this. You’re brave, and you have support.
I’m rooting for you. 

Generally speaking, I really like fall, BUT these ups and downs are really driving me crazy. Yesterday I could barely walk, the pain was so bad.
Today, though—which is good—I have almost none. But that doesn’t mean
it won’t start up again tonight. Yesterday I was once again at my limit when it came to pain medication. Going to the doctor is pointless, because he’ll just tell me what I hear every time: “Ms. B., unfortunately, you’ll have to live with this. You know you’ve exhausted all treatment options, and unfortunately there’s nothing more we can do for you except give you medication to manage the pain.” Spinal surgery is out of the question, because there’s a 95% chance it would put me in a wheelchair, and they can’t tell me whether the pain would be gone afterward, so I’m staying away from that. My left knee has been cut open five times, always in the same spot because there’s no other way. It’s only natural that the scar tissue—along with the nerves, ligaments, and tendons—goes haywire sometimes.  I’m always longing for the weather to calm down and become stable; then I feel good, too.
What keeps me going despite all the pain is, first of all, my hubby and my daughters, as well as my crafts—without them, I’d probably go crazy.

Best, Inge

I’m seeing the same thing with my husband. The summer went pretty well, but right now he can barely stand on his own two feet.
I’m keeping my fingers crossed for you, Inge, that things will get easier again soon!