Introductions: Are you caring for someone with dementia?

First time post here but I have been reading the forums for a bit. My Mom was diagnosed last year with dementia and early Alzheimer's. She had lived with my husband and I for years but the amount of care and oversight increased significantly as the illness progressed. I learned what I could from forums and friends that had been caregivers. I did keep in mind that the disease affects people differently. I had to take over Mom's medication after she double dosed herself and ended up in the hospital. She became very apathetic toward everything not wanting to leave the house, bath or even eat regularly. She still recognized people and said she was homesick and wanted to go home to see family and friends. I was able to organize with my siblings and get her home. She passed a couple weeks after I was able to get her home. She was hospitalized with a severe kidney infection. She then had a massive stroke or heart attack. The physician said she had the infection for a long time. This news hit me like a ton of bricks. How did I miss it? Was I not paying enough attention to her? She never complained of pain. It was after that I learned some dementia patients do not register pain like everyone else. She had the kidney infection but was not saying anything about pain or discomfort so I thought she was doing well physically. How does one manage that part of the illness when pain is a sign of something wrong but your loved one does not feel the pain or does not know to tell you.

I so appreciate this forum and the support given. Much pray and hugs to caregivers of those with this disease. It is very draining of energy and spirit to watch someone go through.

First time post here but I have been reading the forums for a bit. My Mom was diagnosed last year with dementia and early Alzheimer's. She had lived with my husband and I for years but the amount of care and oversight increased significantly as the illness progressed. I learned what I could from forums and friends that had been caregivers. I did keep in mind that the disease affects people differently. I had to take over Mom's medication after she double dosed herself and ended up in the hospital. She became very apathetic toward everything not wanting to leave the house, bath or even eat regularly. She still recognized people and said she was homesick and wanted to go home to see family and friends. I was able to organize with my siblings and get her home. She passed a couple weeks after I was able to get her home. She was hospitalized with a severe kidney infection. She then had a massive stroke or heart attack. The physician said she had the infection for a long time. This news hit me like a ton of bricks. How did I miss it? Was I not paying enough attention to her? She never complained of pain. It was after that I learned some dementia patients do not register pain like everyone else. She had the kidney infection but was not saying anything about pain or discomfort so I thought she was doing well physically. How does one manage that part of the illness when pain is a sign of something wrong but your loved one does not feel the pain or does not know to tell you.

I so appreciate this forum and the support given. Much pray and hugs to caregivers of those with this disease. It is very draining of energy and spirit to watch someone go through.

Hi @daisy2011 - I'm Debbra. My husband was diagnosed with Mild Cognitive Impairment, which seems to be progressing toward dementia. I totally relate to your loneliness. For me, the erosion in emotional connection is the hardest part. My heart is going out to you. Stay here on Connect. it's a great antidote to lonely evenings! Is there anything you do to be less lonely? Visit with friends? Call family? I'd love to hear what helps for you. For me it's calling two friends: one to keep my husband company and one to keep ME company - separately!

Hello, group, I’m Cathy. My sister and I are fortunate to still have our parents with us (86 and 87). Our mother has been diagnosed with dementia after years of the “cognitive decline” diagnosis. Our father has PSP, which has dementia-like components. Both of our parents are simultaneously on a rapid decline. There is so much to our story, but I wanted to introduce myself and say thank you to you who have shared. While I may not be able to offer advice or experience with all situations, please know by sharing your experiences I feel less alone.

Hello, group, I’m Cathy. My sister and I are fortunate to still have our parents with us (86 and 87). Our mother has been diagnosed with dementia after years of the “cognitive decline” diagnosis. Our father has PSP, which has dementia-like components. Both of our parents are simultaneously on a rapid decline. There is so much to our story, but I wanted to introduce myself and say thank you to you who have shared. While I may not be able to offer advice or experience with all situations, please know by sharing your experiences I feel less alone.

Hello, group, I’m Cathy. My sister and I are fortunate to still have our parents with us (86 and 87). Our mother has been diagnosed with dementia after years of the “cognitive decline” diagnosis. Our father has PSP, which has dementia-like components. Both of our parents are simultaneously on a rapid decline. There is so much to our story, but I wanted to introduce myself and say thank you to you who have shared. While I may not be able to offer advice or experience with all situations, please know by sharing your experiences I feel less alone.

I am wondering if and what type medication any of you caregivers are giving for your loved one with Alzheimers that are in mid to late stage. We recently took mom of Donepezil as the doc said it was more for early onset and they had a different med for more mid stage and to see if it was the cause of some ongoing stomach issues - it was not. While she said neither was a cure but to slow down the progress, I figure why not. So can anyone share meds or anything they are giving their mid to their mid to late mid late stage Alzheimer sufferer.

Hello, group, I’m Cathy. My sister and I are fortunate to still have our parents with us (86 and 87). Our mother has been diagnosed with dementia after years of the “cognitive decline” diagnosis. Our father has PSP, which has dementia-like components. Both of our parents are simultaneously on a rapid decline. There is so much to our story, but I wanted to introduce myself and say thank you to you who have shared. While I may not be able to offer advice or experience with all situations, please know by sharing your experiences I feel less alone.

Hello @vimarbarr and welcome to the Caregivers: Dementia support group on Mayo Connect. I am so sorry for your recent loss.

I would ask you to be gentle with yourself. I have no doubt that you did the best you could under the circumstances. I'm sure that neither you nor your mom could have known the extent of her infections. It just wasn't something visible or known and that is not something that you can be responsible for.

Alzheimer's has a way of taking away from the patient the ability to feel and understand what is going on with them. It is unfortunate but part of the disease process.

It would be good to find something that you can do to take care of yourself now. Perhaps some counseling would be helpful for you to put the past few years of caregiving in perspective? What types of support system is available to you?

Hi @vimarbar, I remember my dad, who had dementia, once had a tooth extraction and did not have anesthetic because he didn't feel any pain.

Recently, I told my husband (moderate Alzheimer's Disease) that he was going for an eye exam and he said, good, he was having trouble with his right eye. He never mentioned it before and after the exam, we found out he needed a cataract extraction as he could see nothing. I had no clue! His vision seemed fine to me and he never complained about it.

As caregivers, we do what we can, but we can only do so much with the information we have. You were giving your mom the best care you could, and the disease derailed it. Don't blame yourself for not being vigilant enough.