Introductions - Please come here to introduce youself.

Faithfully

Monkey46 hello!! What’s helped me is just having honest conversations with my siblings and enlightening them on what my dads day to day looks like and my caregiving duties on a daily basis. I’ve seen how the lack of involvement from my adult able bodied siblings has created heavy feelings and a bit of resentment over the years. I’m now in therapy to work through my feelings, I have created a stronger support system and set healthy boundaries. I accept that some people (siblings/family) will not understand or care enough to try to understand. One day at a time and prayer gives me strength when I get weak.😊

Faithfully

BurntOut51 hello. I read your post and would love to see how I could help. I’ve been the primary caretaker of my father for almost 15 years now… it’s been a journey but I’ve learned so much. Does your mom have Medicaid insurance? Have you contacted your local Dept of social services to see what programs are out there for respite?

bettyboop65

Hello, this is Sonia, a wife and caregiver take care of my husband Earl. He has dementia and deaf. I am deaf also. I have been taking care of him since 2019. Right now, he is not independent. He can't dress himself, or feed himself but only thing he can grab on something to eat such as banana, or bread or some foods that he can grab, not with spoon. His right hand has bad arthritis.

I learned so much about dementia or Alzheimer's. It is a very learning experience for me everyday.

Beetlecamper

My Mom is 87. Almost five years ago I moved in with her after she had a heart attack following surgery. I lived nearby and wasn't working because I am disabled by ME/CFS that followed a decade of undiagnosed Lyme Disease. Over the past year she had started showing signs of cognitive issues, but she was still fairly independent. Two months ago everything changed suddenly. She didn't remember how to do anything. She wouldn't do anything without being prompted or directed. She said she was being moved around to homes that looked like hers but were not. She asked to go home all the time. Threatened to call the police. Asked to see my birth certificate to prove I was her daughter. Etc. etc. I lost her overnight. And I went from being a support to being a full primary caregiver. I'm doing twice what I was with half the rest. She does not want anyone to come to be with her so I can have a break, but that is going to have to happen or I will end up in the hospital. One of the hardest things for me to deal with right now is that we had agreements on how we were handling the household finances and I had taken over the bill paying for the most part, but now she's constantly questioning everything repeatedly, getting angry about having to reimburse me for groceries I buy for us, and suggesting that I should be paying more toward household bills. I'm having a very hard time dealing with this. She is quite well off and I am 58 and only getting disability. I had to use my savings to live on with my three kids when we fled our home because of abuse several years ago. I can pay for half of the groceries, but that's all. I don't know how to handle this. And I'm beginning to think I can't do this at all.

Miriam30

Hi all my name is Miriam, I am 30 year with severe anxiety and developmental delay. I have been taking care of my mother after she got her stroke 10 years ago. I have been struggling to support my mother on my own. There is a mental and cognitive component that my siblings do not understand. I do feel as if they threw me the responsibility on to me. I have been struggling with dental implants for years.

MissMish

Hello, I'm Mish. I'm the recent caregiver for my Aunt and the only person in our family that will take care of her. She was difficult before she developed what I believe to be dementia or Alzheimer's and this possible diagnosis makes her more difficult to be around. She refuses to go to doctors, she attacks people, forgets to pay bills, walks off, chases people away like the in care help that was coming to check up on her, is highly paranoid and experiences severe mood swings. She doesn't remember family that she used to be fond of like my daughter and has accused my ex husband of stealing from her after he paid to have her water turned back on. I was overseas and was just recently notified about her condition and am very nervous about what I will find when I go to stay with her to care for her in a few days. Reading your posts have helped make me less nervous, however, i do not have poa or guardianship over her in order to get her to a doctor or to get the house repaired due to her forgetting or just not being able to handle it so I'm also concerned about that as well. Wish me luck and please feel free to provide me with advice. I truly need everything I can get. Thank you 😊

Dennis

Hello everyone. This is Dennis, I am 63 and my wife and I have moved in with my Mom after becoming GOP last summer. I have chosen to retire early in order to handle this big assignment. We have taken advantage of class's from the Department of aging within my county. These have opened many doors: Elder care Lawyer, help from DSS even this resource "Trualta".

My 86 year old mother recently 12/23 "graduated" out of the Hospice care, after 16 months. Her improvement is remarkable.
Over medication, had been a vicious cycle for my siblings under Hospice supervision, with no happy ending. No one to blame here... it is what it is.

Her improvement is attributed to adjustments in medication back in August 2023. After withdrawal from what might be identified as addiction to (a number of medications). Much love and encouragement to participate as she is motivated, to interact and involve herself in daily activities. We have 3 paid caregivers helping throughout the week. Now she sleeps much better (Stays in bed longer anyway) and is better rested, even napping during the day.

She is believed to be suffering from "LATE" dementia. Slow in understanding, "word salad" when comunicating with us. She is scrambled in speech, is 7B on the Fast scale. Yet remains a beautiful personality (Most of the Time) humming and appreciative.

Our Dr has prescribed 1- Donepizil 5mg each night. We are awaiting to see if this improves her "Sundowner" difficult behaviors at night. Perhaps it will improve her ability to use word in forming intelligible sentences. Time will tell. We are only looking for any minor changes.

Has anyone been able to recognize "LATE" dementia in their loved ones?
Limbic-predominant age-related TDP-43 encephalopathy (LATE)
https://www.mayoclinic.org/diseases-conditions/dementia/in-depth/late/art-20534312

If so, what have you personally discovered as to the differences in behaviors as opposed to other clinical Alzheimer's? Have any of you adjusted medications and seen improvement?

"LATE" seems to be a new diagnosis, not to much history out there: https://en.wikipedia.org/wiki/Limbic-predominant_age-related_TDP-43_encephalopathy

Just a shout out: Thanks Dennis

Advice to any new to this:

Learn as much as you can! Take classes! Listen and share your feelings and experiences.

What Does the Bible Say About Caregiving for Elderly Parents?
Go to:
https://www.jw.org/en/bible-teachings/questions/elderly-caregiver-help/

     https://www.jw.org/en/bible-teachings/questions/honor-your-father-and-mother/

Elmo

Hello. My name is Jeff, I am 63. My wife, who is 65 has had early onstage of Alzheimer's for about 3 years now. My mother who is now 86 had dementia. Have a harder time with my wife in that the short term memory is not good, but the long term memory is still there. It is effecting her right side in that her right hand just does not want to do what her brain is telling her to do. Emotionally the hard part, at least for now, is the frustration when she doesn't understand what is wrong that she "doesn't feel like herself" and then get frustrated and breaks down. I try to explain what is wrong in, what I think is a gentle way, but that doesn't work either. I have a hard time also that I am her safety valve. I might have a hard time explaining myself here but I cannot go anywhere without her wanting to follow me. If I go into our office to get some computer work done, like the bank statements, emails or anything like that she will follow me and then hover around trying to do "stuff" like cleaning but cannot get anything done as she will drop things and make a bigger mess. As I am new to this I have a hard time letting it go and just clean up when I can get her to go and maybe watch TV as with the right hand not able to do much there isn't much to do. I know I have to try and get her to try puzzles, or some kind of brain training things, but she cant hold a pencil, or objects to put anywhere, thus the frustration shows up again. I retired early to be with her but all the things I thought we would do together, we don't. Bike rides, skiing, fishing, camping....all to much I miss as well.

mopo623

Elmo it's hard coming to terms with what we thought retirement would look like and what it actually is. My mom has lived with me for 26 years, but she's 86 and her needs have really changed on the last few months, so our lives are really changing now.

BobHat

Hi everyone, my name is Bob and I am 81, caring for my 80 year old wife. Diagnosed in 2022 with vascular dementia, updated diagnosis in 2023 to severely impacted range and we are scheduled for another evaluation in late February 2024. She is on 2 memory meds as well as pain meds for her lower back stenosis and nerve damaged right leg. I try to keep her active with PT 2X per week, 2 days @ a memory daycare facility. Some days are ok, others are of course learning to deal with another aspect of the disease. We are snow birds, NY in spring & summer, FL October to April. I'm wondering what the change will be like when we go back to NY. Although we have lived there for some time, it may be a new home to her when we get there. I am the primary and only caregiver for her and while we have many family members in NY, there is little help other than taking her out for lunch or dinner.

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!

GrandmaM

I am 83; my husband is 84. For years I knew something was going on when he would no longer go to church, go out for meals with friends, or bathe very often. Things came to a head when he had a stroke in September. Rehab went well. Back home I am a full time caregiver. Thankfully I have family members nearby who help on occasion. Having a Senior Helper come 3 times a week for 3 hours in the morning has been a great relief; they help with showering and light housework.

mopo623

GrandmaM Where did you find a senior helper? I'd that someone from your community?

mopo623

frauhahn Not understanding if you're cut out for caregiving is so hard. There's not much choice.

Cathy

Peacefinder I understand exactly what you are talking about. Delete the negative influences. It is in her best interest. It is what I finally had to do because some people would call and upset her to the point that it affected her physically. Blood pressure had been excellent and after speaking with a negative influencer it was 178/100! She was swearing and aggressive. I considered it an assault on my Mama. I wish I had deleted him sooner!

Azulhotdog

Hi I am new here , I am starting taking care my husband. He has ESRD, Heart failure , cirrhosis of the liver, he is being saying words or sentences that doesn't make sense , I need to learn a lot how to help him.

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Azulhotdog
Were you able to find helpful information in the learning library?? I'm happy to point you in the direction of our heart health toolkit and content on communication!

KathyP

Hi all just introducing myself. Finished a wonderful webinar on thinking more positively. I truly needed it. The last three years I have had to care for my parents both have had Alzheimer's. Dad passed last year. Mom had a stroke two weeks ago on top of Alzheimer's. Selling the house, meds all their care has been so overwhelming with no sibling help at all. I had to leave my job and everything. I guess it's ok to say I hate this disease. I always try to donate and do the walk but it's awful.

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KathyP
Hi Kathy! Glad to hear you enjoyed the webinar. You can also check out the webinar on The Emotion Wheel: A Guide to Emotional Awareness. You can type WEBINAR in the search bar at the top of the portal and it will populate for you. You can watch it at your own convenience or in small segments if that works best for you!

deremick

Hi, My husband and I have been caregivers for my 87 year old father. He is a frequent faller and has broken a hip, been to rehab and now lives with my husband and I. My father wants to go home but we have been told by many medical staff, he needs 24/7 care. My father does not want to go to a nursing home and my siblings and I hoping to keep him from that as long as we can. My father has lived with my husband and I for 5 months now and the honeymoon is over. Looking for caregivers to help out so we can get him home and happy.

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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!

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