Many of us, myself included, come from a dysfunctional family which adds a lot of weight to the challenges of caregiving. I have read stores on various threads on other topics and decided it would be good to have a thread just for this topic for people to share, vent and discuss.
The idea for this thread originated on the thread named "The Caregiver....How are YOU doing today?"
Mum still can't walk unassissted which means she can't come home. With Covid going around again i hate having her in a NH but can't have her at home either.
She has weird diametrically opposed sides to her, she hates everything but soncerely loves the attention. She knows where she is is best but still wants out (understandable). She refuses e v e r y t h i n g i offer to help and never wants anything but at least she's compliant enough with the NH to do the PT stuff and let me straighten out her finances. She doesn't want to take care of herself but is embarassed by the need for emergency care.
I'm tired not only from being burned out dealing with her over quite a number of years as this insidiously progressed but I'm also tired that she's in a NH. The uncertainty day to day, how to pay for all this, how long will this go one, hoping a bad phone call won't happen has me exhausted even though she's nit here anymore but MUCH better where she is.
I'm still dreading the Medicare thing coming up.
My sis is better, however last weekend she stopped eating again. My niece and I asked several time for. Urinalysis and culture…it didn’t happen. On Friday my sis was transferred back to hospital for dementia. She has a severe UTI. Kidney levels are elevated close to being put on dialysis.
please understand that I know and understand nursing/rehabilitation facilities are understaffed. My heart goes out to these employees. Yet…..why no follow throug? My sis has kidney issues due to advanced diabetes. UTI’s are dangerous for diabetics and anyone who gets one that goes sepsis.
While in Kentucky, I had two great thanksgiving dinners. The traditional Thanksgiving, we had dinner at my nieces fiancés family. It was awesome,, very welcoming. The Saturday
ayafter thanksgiving we had another Thanksgiving dinner at my deceased nieces house where her husband lives with his new wife. My deceased nieces husband welcomed me with a hug which I appreciated I got to see my great niece,met her husband and two daughters and my great nephew, his wife and daughter.
Thank you for thinking about my sis. How is Glad I’m Here. Not seeing any posts from her.
"It is what it is..."
Accepting, especially when things are outside our control. Plus 'well' is a positive word: healthy, satisfactory or sensible. 😊
“Oh well” is a great mantra!
My brother called last night and I gave him a quick update on Mom's behavior. I offered to let him come up and take over LOL. He declined as he has stuff going on at his house that's not so great and he can't afford to take the time off work. He did say that if the situation gets worse (or whatever) to just call and he'll make a turnaround trip to come get me. He also mentioned talking to the social worker or someone else so it can be noted in Mom's chart about her moods and behaviors. Idk why I didn't think of keeping a personal journal or chart of how she's doing day by day earlier to share with her providers but I'm starting that today.
Grandma has been ok, her cares are simple. Help her bathe, put her lotions/ointments on, get dressed, fix her meals and snacks, ect. She has her moments of fits and paranoia but usually they are brief. It's amusing to listen to her go on about different things.
I'm going to try to hold out for a couple more weeks and see how Mom does after her next round of chemo and see what these follow up PET scans and labs show.
All in all just taking it day by day and just going with the flow.
I love that I’m not the only one!!!
There should be a new thread…”How is the caregiver taking care of themselves?”
I have also been thinking that my new mindful ways of willing myself to be calmer in the face of craziness is a dysfunction. I have a new mantra “ Oh well . “
Witnessing crazy decisions is tough . I am working on being less anxious over waiting for the next inevitable emergency and how LO’s do not live in reality. I have become more accepting that tragedies do happen in life and I can’t stop that . I too have this forum to thank .
I love the description of boycotting . That is what I have been trying lately as well when possible .
I am surpringly calm compared to other Decembers.. have even had a couple of people comment on my strong boundaries lately! One a professional (yay me - patting my own back + I am THANKING you forum-folk with a zillion thanks ❤️).
Last year included 1 fall, 1 injury, 2 emergency medical visits & 3 bouts of incontinence. Now I wasn't personally involved with all of that.. and the rest of the day was good. Now we all know I can do nought about other's decisions & actions...
As Alva would stamp (ha ha) *I am an adult* & I have choices: including a boycott or attending.
Gunna sleep on it
Every true, joyous laugh brings happiness to all that hear it, imo.
Hearing true laughter makes me laugh.
Even the weird natural laughter of others cracks me up because it is amazing and so real and contagious.
The honor dignity and respect given by most people on board as well as the awesome input from the angels and wise, has been a truly wonderful and amazing impact on my life and my perspective.
Words cannot express how this forum has helped me in so many poignant ways.
It takes the sharing caring and understanding from the awesome people who are experiencing or overcame this painful process of loving with all our hearts no matter what.
It has often scared me that I didn't see what I see now and how those whom I loved so dearly manipulated and use my love and dedication to hurt and controll me.
The Grace of God has kept me and led me to this forum.
I still believe that God is love and love is God.
Have a very merry Christmas 🎄!
Ali, you always offer sound logical advice. You have a gift with words and logic as well as being one of my heroes.
I had a wonderful time in California with my son and family.
I laughed so hard that my stomach hurt at one point. It's been ages since that has happened.
I am wishing you all a beautiful Christmas
And rays of love light and healing.
This thread has been around a long time. I read it but I haven’t posted on it as much as others have.
It’s an interesting thread with a lot of interesting conversations.
Enjoy your Christmas decorating!
Once every year or so, I revisit this wonderful thread and re-read through some parts of it. It's helpful for me to consider and reconsider all the sad and frustrating, and also always wise, shared lived experiences and input from everyone here with a fresh, present-day perspective.
I can't believe it's been 10+ years of this wonderful thread.
I hope this thread will always be a place for open sharing and earnest support. Social media spaces have changed, but family caregivers who are in dysfunctional situations will always desperately need a place to sound off, be heard, and be given advice and support.
This is a sacred space. I hope it always remains that way.
I'm just bumping the thread and being sappy. lol Much love to all.
You are always the most important figure in your life. You can't be there for anyone else if you aren't well and in a good spot. I hope you easily forgive yourself for being unable to see your mom whenever you want to. You're trying, and you have to look after yourself, too. It's enough. (((((hugs)))))
Sharyn, I'm concerned about your sis. I agree with you that general anesthesia isn't good for many older folks (maybe it isn't good for many others in general, idk). It can cause issues... imho. I haven't looked for studies or more evidence of this, but I've seen it with my dad and the long-term problems (that required additional surgeries, in his case) that cropped up for him after getting general anesthesia, and what you describe with your sis is just not good. I hope common medical/surgical practice can evolve here and find other ways to numb and sedate people instead of general anesthesia. General should be a last resort if other things are deemed too risky for some reason. I hope treating sis's UTI helped some..? You and your family are in my thoughts right now. I hope when you post again, there is some good news because your sis has been having a very rough time.
I am having a similar issue over my mother.
She has been in nursing home for almost two years. I have been an emotional wreck since the onset of her dementia.
The thought of losing her was to hard to bare.
Its still there, always will be. Especially during the holidays..
I used to boo hoo during my first visits to nursing home..
I stay in prayer. There are times I unravel. One thing was this forum was my greatest help. Especially when I was advised to watch my negative self talk.
I also find that my focus on hurt and memories from the past can put me in a funk.
I am a work in progress just sharing my experience.
Another thong that helps is smiling embracing and showing kindred love in my daily interactions with others and associates it come back to you and is uplifting.
Also self care. You have to take a break.
Every time I beat myself up because I did not make my visit with my mother because I was physically unable or overwhelmed I would find her just fine and okay.
Take a break for yourself. Also keep posting. A response or a post can make a big difference.
I am wishing you all the best in your struggles.
Much love to you all.
Hang in there Allusedup.
Yes Barb! Still I rise bought tears again. You will always hold a special ial place in my heart. And that quote mean as much today as it did years ago.
Needhelp thank you I cheered up reading your post.
So much to share of my journey.
Sharyn so sorry to hear about your niece I pray she continues to make progress.
You've been through so much. Remember to care for yourself.
Rays of love and light to us all!
Wishing you peace during this difficult time.
"And still I rise".
Keep those words in your ❤️.
Ali it's so wonderful to hear your progress towards completing your masters I wish you all the best.
It bought tears to hear about the breakthroughs during communication with your mother. Such a blessing.
Barb! I will be forever grateful for your wisdom, guidance and advice over the years. Always in my heart. I have tears remembering how you and other special angels and members in this forum helped me through one of the hardest periods in my life.
I am still a work in progress. In a better place for the most part. Still crying still tearful getting better and a tad stronger.
So much to share. I just had to reach out and wish everyone rays of love light peace and happiness especially throughout this holiday season.