Introductions - Please come here to introduce youself.

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deremick
Knowing when it is time to pivot and try something else is a testament to your wisdom! Good luck on your search!

gfar

Hello my name is Gina and my husband is Todd. We are full-time care givers to our 30 yr old daughter for the past 7-1/2 years. Jourdan our daughter has a severe TBI after being hit by a drunk driver in Dec 2016. I am yet to read anyone here with a similar care giving case so maybe this will open the discussions up for this. Jourdan was our church secretary, full-time student, our main Drummer in the worship band at the church we all attend and work at. Her dad is the pastor over Men's ministry/Safety team, I mom, am a ministry assistant and Jourdan was not only an employee but she was the office clown, always making people laugh. Ex: one of our pastors came back after being in Africa for a few weeks on a mission trip to find one of his drawers lined with large plastic wrap and live goldfish floating inside (yes that was our daughter). So one day she was pulling into church at 7:50 am when a drunk driver going 85 mph swerved around vehicles to pass on the right running the red light and hitting her small car so hard she ended up in ICU for 22 days and rehab out of town for 5 months and back to the room she grew up in since May of 2017. Since Jourdan does not walk, nor talk or eat by mouth, she is tube fed & all medications and liquids are given thru tube as well. Praise the Lord our church where we still work is only 3 blocks from our home we are able to tag team so someone is with her 24/7. We do not have anyone else come in to help because we realized only her mom and dad can give her the best care. God was gracious enough to spare her life & bless us to be able to care for her full-time. Still praying for a miracle and will never stop. Praise the Lord Jourdan has been very healthy considering. We have weened her off many medications and she is only down to the bare minimum. We research every new thing that might help mostly natural NOT medications. Jourdan never drank or smoked or ate bad so we try to care for her as she would now. So our new life has had many ups and downs but we know God is always watching and guiding us, even when we are crazy confused.
Proverbs 3:5,6

MoniqueFrahm

gfar Gina and Todd, thank you so much for sharing your family's story. I am so sorry to hear about what happened to Jourdan. I can't imagine how difficult that must be. I'm very glad to have you here in our community of caregivers. I hope you can find a sense of community and friendship here. Please let me, or others, know if there's anything we can do to support you in any way.

gfar

MoniqueFrahm thank you Monique. That is very kind of you. Really hoping to meet others maybe in the same area of life we are in and the ups and downs of tube feeding and caring in general. <>-- have a beautiful day

Gilly

Hello everyone, thank you for being willing to share your experience and situations. I am a 67-year-old woman (Gilly) who has just stabilized some of my own health issues, caring for my 66-year-old husband who is legally blind (with a genetic degenerative disease that started 15 years ago) who has mild to severe dementia, likely Alzheimer's - diagnosed in 2022. Luckily, we are both retired. So far, we are doing fairly well, especially since he started taking Memantine and Donepezil (we see both a neurologist and psychiatrist), but I am extremely lucky so far in many ways, because of his basic personality and our deep compatibility. My challenges are to keep both of us happy and safe, and to deal with my own sadness, fear, and anxiety. Thanks again to everyone here.

Student

Gilly What a heartfelt introduction, Gilly. It sounds like you're navigating a complex journey with strength and grace. I'm curious, have you found any particular activities or routines that bring moments of joy or peace for both you and your husband amidst the challenges?

Mimi-K

Hello to all! I am Mimi and my husband of 42 years has had both vascular dementia and Alzheimer's for the past 6 years. I am joining to learn how to deal with difficult situations. God Bless all in this group.

Student

Mimi-K Hi Mimi, it's great to have you here! I would love to hear any strategies you have found helpful in dealing with the difficulties that come with caring for a loved one with dementia and Alzheimer's, if you would like to share?

Student

March Welcome and thanks for sharing! Are there any specific aspects of caregiving for your father that you find the most challenging that you would like to talk about?

Student

BobHat Thanks for introducing yourself Bob! It sounds like you do have a lot on your plate, but you are doing your very best in trying to stay positive through this all! Love how you both enjoy the snow, I'm curious to hear if you have any preparations to help ease the transition smoother when you go back to NY? Or would you like some help with this? Let me know!

cheekiemarie

Hi everyone. I am having a difficult time caring for my mom who is dying from Stage 4 cancer. She has been hospitalized 4 times within three weeks and I am feeling overwhelmed. I have taken time off of work, but I am afraid that I will lose my job because of my mom's condition. My mom has become completely bedbound within weeks and she used to be extremely independent. My mom found out she had stage 4 cancer in March. Since then she has lost 35 pounds and become completely dependent on others. The doctors keep telling me that once she goes to rehab she will get better, but I do not see that in her future. Every time my mom is discharged from the hospital, she has to be readmitted the next day. I feel that doctors are not giving me all the answers. The conversation of hospice keeps circulating and I'm not sure if this is what I want to do, but it seems like her time here on Earth may be ending soon. I try to keep her encouraged and make sure she takes down some food, but she tells me she cannot do it anymore. I hate seeing my mom suffer and I would like for her to get better, but at this point, I just don't see it. My mom is everything to me and I am scared of life without her. I don't know what to do. Any advice?

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cheekiemarie
Sounds like you are really trying to do what is best for your mom. Sometimes being up front and honest with your healthcare team is the best option when you are seeking the truth. Have you asked her physician or the social worker at the hospital specifically about hospice services? I would start there. Once you are connected to the hospice team, you will be able to ask questions about their services and see if it would be the appropriate time to start care with them. A referral to hospice does not mean you have to commit to services - it is just an opportunity to learn more about what they can provide to your mom and you!
You can also contact a hospice company yourself if you would like to ask questions about their services. You can find a list of providers near you on the Medicare website: https://www.medicare.gov/care-compare/?providerType=Hospice

Barbara

Hello, I am 56 years old and have twin daughters that have been disabled since birth. They have intellectual disability, autism, & many medical issues. I have been their primary caregiver since they were born. There have been so many struggles in their lives but I am incredibly grateful for being the mother to two beautiful girls that are so innocent. They love everyone, they don't see race, sexual preference, financial "class" or any other things that have jaded most of our lives in one way or another. Saying that they are also at such a high risk for abuse or exploitation. The last 4 years have been incredibly challenging. One of them got critically ill just before Covid hit & was in the hospital 9 times that year. She was in for 5 weeks in the beginning of the year and on a ventilator for 10 days. She was not expected to survive. Her father had been diagnosed w/ALS the October before and was needing more & more care. (He & I had been divorced for 15 years). He was my respite and the girls loved him dearly so my husband & I decided to build on to our home to be able to care for him too. Our lives were turned completely upside down. In August 2020 their dad had a stroke and passed away 10 days later. The doctors were pretty much giving up on my daughter & suggesting that we put her on Hospice and stop all care except palliative care. We opted for palliative care but not hospice. After about 6 more hospitalizations and tons & tons of doctor's appointments a Rheumatologist was finally able to give us a diagnosis & she started being treated for an autoimmune disorder that has saved her life.
In their dad's passing he left a special needs trust for the care of our girls. During the time when we were going through everything we made the decision to put the girls into a group home as I just couldn't emotionally handle everything on my own any more. After visiting a couple of places I just couldn't do it and bought a home for them to live in. I staff it w/caregivers 24/7 and some of the time I am the sole caregiver but it has helped them be more independent and they have grown so much. The guilt of doing this was almost more than I could bare but a year in I have to say it was the best decision I've ever made. I hope this helps someone in their need to make hard decisions.

[deleted]

Barbara
Thanks for sharing your story! I'm sure you have so much experience and knowledge to share with others. We are so glad to have you here!

skyeblu4143

Kari Hello, My name is Jeanie and my father was diagnosed with cancer in 2015-16 my mom was taken care of him as she always did. He went into remission in 2017..2018 cancer came back but travelled to his bladder..COVID hit he was so sick have chemo(then radiation..it was pretty bad..(2014-15 I noticed my mom forgetting she would tell me things on the phone in our morning conversations then same at night..I expressed this to my siblings but they shrugged it off and we'll didn't care or(.it's nothing she's fine)(Have not spoken to brothers since 2014).my mom's health was put asid or on hold my siblings after COVID still couldn't be bothered so struggle in me working 2 jobs to pay my little lake cottage has to find the means to eventually go down002017-18 when COVID hit and my dad got real bad..BAMM with mom it was like a light switch her Alzheimer's was triggered from all the stress..She went to nuerologist and was diagnosed(I already knew for years)...Dad was so sick, mom stopped caring for him stop cooking and cleaning would only cook pizza fries and hotdogs....couldn't see them until after COVID..went there in 19-2020 and OMG my mom had so many pieces missing..where did they go? Pieces of her gone😭..dad horribly sick.(both look 90 and sickly).(today look wonderful like they are 60 I tell them)first prostate cancer, then bladder, now Multiple Myeloma (bone cancer)..I was 49 lived in CT. Where I grew up..left CT ..20-21 sold all my parents property in CT. And In NC..been taken care of my father with cancer..and mother with Alzheimer's 24/7 non stop, no help from my 3 siblings first 4-50 months got them stable dad 30lbs heavier mom gained 27lbs..fed them all herbs, roots, natural remedies, juicers from all veggies, no pesticides..minerals cook only in cast iron..(among other things) went back to CT. For 4-5months to take care of my own crap dad wasn't doing chemo and was holding the fort..came back been here ever since and my dad who had both kidney failure with nephrostomy tubes put in
because his bladder was destroyed by the radiation .and bones brittle, HGB never above a 9 in 4 years ,iron infusions, blood transfusions ...Well I'm happy to report..KIDNEY FUNCTION 100% NO MORE IRON INFUSIONS..13.1 HGB..SATURATE IRON THE CBC ALL NORMAL..COMP PANEL ALL NORMA..Oncology, nephrology, and urology, do not understand because he still has multiple myeloma..and his stage was last..and had 20 and 30% working kidneys with a rare bacteria ..He told them my daughter Alkaline me, gave me root juicers beets ginger and much much much more everyday for my kidneys and cancer..oh and was getting septic in his UTi no longer getting septic..he can walk again no walker, drives goes shopping..ect...82 and has not been this active since he was 70..His cancer number lower but no more excruciating pain in his bones back ect...He now helps me when he can because I take care Mom 24/7..she can not be left alone, we don't want her burning down the house..or wondering off..We made bees wax candles yesterday..I had my mom for a little while..it was nice..My mom has not progressed a whole lot since I've been here..actually her Dr Are amazed at how well she's holding this stage ...she's still mobile changes an showers herself getting her to take one is the chore....does not cook or clean..will throw laundry in an leave it..or wipe the sink 100 times lol..however everyday she makes her an my dad's bed.. military style and can still fold clothes military style as well..The only regret I have is not leaving my life sooner then maybe I could of cured them both completely..I know in my heart if I was 2015 they would both be cured today..But like my Pop said, you being here stop her progression, and saved him 5or6 or who knows how many more.yrs..they gave him 3-6 months in 2021..almost 3 yrs ago(and still no big pharma treatments and better then ever)Love is a powerful thing..in 1 year 2018-19she jumped 3 stages...in the time I've been with her she's not out of stage 3 .end of 3 almost 4....forgets 30seconds ago..no STM..but still has her LTM..The Lord has blessed me..I ask for the strength everyday to go on and get me thru today.. 🙏 some days I'm completely exhausted...As of today it's been 19months 24/7 with 3 days off..Just me taken care mom an dad with some help from dad..Living in my mother's Fantasy Alzheimer's world..And that's where we have grown to live..Her world 😢..Oh Let me mention I have 3 siblings, too high an mighty piloting there planes somewhere..Too busy traveling the world probably..19 months not 1 phone call or visit from my older brothers..whom live 3 and ,5 hours away..oh and my RN sister who can't handle seeing them knowing they are dying..well she comes once or twice a month for ,30 mins .after she goes to the gym, and salon, and shopping ectt on 1 or 2 of her 8 days off per month..whom also lives 20 mins away.. YUP IM HEATED👏 👏 👏 all the money in the world won't buy you a heart, compassion, or ticket out of the false matrix for SOME millionaires..just saying..Thank you all who read this, ik its a complete cluster of a train wreck..I won't be proof reading as I'm running out of gas..need at least an hour more of 😴, can not keep my eyes open..May the Lord bless and comfort you all in your times of need..Give you wisdom and strength to get thru the day or even an hour..May you all find peace knowing one day we will be glorified with the ones we love again..In Jesus name I 🙏..Also, I ask for forgiveness for my condescending anger 😢..Amen

ElwoodGreen

I am not certain I want to remain a part of this group. I started to write an introduction, briefly stepped away from my computer, and when I returned, want I had written was GONE!
I don't have time for this.

Lori

Faithfully I don't take the time to check out the chat and just saw your response. I really need to take the time to check in on here because things seem to be declining for him. The first day getting him home from hospital back in December was hard. He could barely walk, but each day got better. He's had recurring UTI's since December and just got out of the hospital again. I don't feel like he's totally back to where he was cognitively before the UTI in December. We are now seeing a urologist to find out the reason for the UTI's. I'm hoping when that's resolved, he will do a little better. His cognition and walking has decreased a lot in the last few months, but he's still aware enough to know what's going on in the present, and knows that he doesn't know. That's the hardest part. He knows he's not himself, and knows that he struggles with things. He has pretty much given up. He will be getting physical therapy at home again, and I hope that it gives him some encouragement. My encouragement to go outside or to even walk around the house doesn't go very far with him. He just gets angry at me. Meanwhile, I watch him get weaker and weaker. On top of all this, my dog is also starting with dementia. I laughed when the vet told me that's what was wrong. We're doing ok, but the thought of the future kind of puts knots in my stomach and I'm not one to stress about things. I'm not a cryer and this morning out of nowhere I started crying. My employer provides a service where I have access to 10 free counseling sessions which I am starting today. I'm also really going to try to use this community chat more regularly so any advice is appreciated.

JodiDee

sjcamp

sjcamp
My name is Jodi. I am 55 and I'm caring for my son who is 24. He has a degenerative neurological disease called Spinocerebellar Ataxia. There is no cure or treatment. He started showing small signs around the age of 15ish. He was finally diagnosed with a genetic test at age 20. It affects his coordination, gait, speech and cognitive abilities. His disease is very rare. He’s progressing much faster than we expected. I also have a daughter who is 34. She is married and lives 3 hours away. I’ve also quit my job to care for him. He now requires me to shower, dress, brush his teeth, and feed him. He is also in adult diapers. He’s lost the ability to talk where we are able to understand him. It’s now just mumbling. He has schizophrenic delusions and hallucinations. He sits and plays video games and talks to “the people” all day. He does not understand that he can no longer do the things he use to. So managing that has been a challenge he is constantly falling. The falls are getting worse and he’s injured himself a few times. We are also very devastated and grieve. My sweet son, who was accepted into the Navy is now so frail and now fully dependent on me.

Mawmaw34

I'm 71 years old and am the caregiver for my 74 year old husband. He was diagnosed 3 years ago but there was something going on prior. I'm lonesome for my love. I'm physically disabled somewhat but am thankful I can still function and drive. My husband can no longer do things that require steps. He's agitated more now and sundown syndrome is really a problem. Somedays I feel we've done okay then others,not so much. Lots of prayers.

BeauTful1

Hello everyone,
I am the primary caregiver for my recently diagnosed 83 y/o mother. While I do have support and assistance from my family members, we are all trying to navigate the complexities of this new role for our mother as this situation progresses. I am here for information, encouragement and support.
And to one day be the source of the same for someone else.

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