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 @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.

It's hard for me, especially at night, to be alone. My wife has lived in a memory care facility since July. I can take care of all my physical and environmental needs, but the absence of human companionship, even if it's not very high quality, is hard. I am shy by nature, and have a hard time reaching out to people. My wife and I moved into a large condominium building about 2 1/2 years ago, and her condition kept me busy with her almost constantly. I have made some friends here, but they party a little harder than I can tolerate physically, although they're nice people and want to include me. I don't have children, and sometimes feel that my life has lost a sense of purpose, although I do a lot of volunteering in the community. I guess I should try to engage with my imperfect friends and in activities that I'm not very interested in, like going to church, just to be around people more often. Any other suggestions? I am close with three sisters and stay in touch with them via Zoom, phone, and texting, but they also have their own lives.

Dealing with a lot of stress and anxiety caregiving a 72 year old spouse with what I see as late middle stage dementia. Cannot get a doctor's diagnosis and my spouse refuses to let me accompany her to medical visits so I operate totally in the dark. It's incredibly lonesome except for my dog--I think they just put her on Rexulit but she is hiding it from me and now can't remember where she hid it. Evil disease

@ultrajko Would it be possible for you to write a letter to her doctor and explain what goes on at home. Explain about her forgetfulness and misplacing medications. Not taking medications could be serious. Ask the doctor to tell your wife that it’s important for you to accompany her to appointments. He/she needs to explain/talk to you also.
Would this be worth a try?