I'm So Confused...

My dad is somewhere between the moderate/severe and severe stages. Yesterday he slept most of the day, needed to be fed (but didn't eat much), was completely incontinent, and was essentially incoherent. I mean he was so out of it that I kept watching him to make sure he was breathing. Just ran labs that were all normal, so I know he's not ill. Today, he assisted with his toileting, shaved with assistance, was coherent, and he fed himself. Is this roller coaster typical of the disease in general, the severe stage specifically, or is this because he's just now approaching the severe stage?

[jaykay777]

You might want to jot down your day to day observations to see if a pattern is emerging. It's likely that he's approaching the severe stage. I hope you have at least one other person helping you with his care. You will need some respite from daily caregiving.

[Lori56 in reply to jaykay777]

You might want to Google Lewy body dementia Most people use the word roller coaster to describe this type of dementia Then maybe talk with dr.

[Teriwardrup]

I don't really know all the specifics of the stages. But your dads situation sounds a lot like my dad. Has he shown aggression towards you for trying to help him with personal things? Bc that was the next thing that happened to my dad after all the clothes issues, all the needing help with shaving, etc. Eating was pretty good but if he was sleeping he would rather sleep. Which I understand is all a part of the disease. Now my dad is in rehab and will transition to additional care in the near future, the aggression is too much to handle with just one person. They are very strong.

[Hidden in reply to Teriwardrup]

My dad has not been aggressive towards me at all. There was a period of time when he was quite aggressive towards my brother, but he doesn't do that anymore. Interestingly, he's actually expressed gratitude for my help and sometimes apologizes for needing the help. I just reassure him that we're just loving him. He does sleep much more now. I'm with you on the aggression...that would be very taxing and for me very emotionally hurtful...even acknowledging that it's the disease not him.

[Teriwardrup]

That's great you are reassuring him. I did hear that they respond to affection and love, and I'm glad you are able to make him feel as comfortable as you possibly can and he responds to that. I wish the doctors knew more about it, everyone has such a different experience with it it seems like. My dad has been in this stage for a couple of years I think with getting clothes confused and notIceable changes. Personal habits, etc. I started documenting things because there is no way to remember it all. The aggression is hurtful, especially since he is the nicest person I've ever known in my life. I hope they find a cure.

[Hidden in reply to Teriwardrup]

It's interesting that you say the aggression is so different from who your dad was. I was thinking my dad is not aggressive because that was never his personality to begin with. Before the disease he was always a bit more adversarial with my brother, but never aggressive. My dad adored his mother and had 4 sisters. Then he married my mom and she took care of him for 66 years before she passed away. I'm his only daughter...so he's always been cared for my women who loved him and I guess that's why he so easily responds to me. I feel very fortunate about that. This disease has ravaged my dad in less than 3 years. It's moving with lightening speed...

[Teriwardrup]

You are fortunate to be able to care for him and that he trusts you to also. My dad was diagnosed within the last 5 years. I think the dr just thought it was senility at first. But looking back on it now we think he's had it for years just different things come to mind. Unfortunately, the diagnosis came after he became symptomatic. I think there are a few things they offer that is supposed to slow it down, not sure if it helps or not. My dad was on a patch for a while. It sounds like you are doing a great job taking care of your dad.

[Hidden in reply to Teriwardrup]

Wow.... We really saw very few signs before his diagnosis.I hate this disease. I wish you the best as we travel this most unwelcome journey. Feel free to reach out to me anytime.

[Teriwardrup]

I wish you the best too, and ditto for me. We're all in this together for sure.

[NancyN_0105]

My husband , who has early onset Alzheimer's, was the easiest going person but became very aggressive. I had watched his mother-in-law, who had dementia, do the same thing. We thought she was being mean and sneaky. When it happened to my husband, I started reading everything I could get my hands on, including Alzheimer's reading room. I found that being positive and loving, talking, smiling, hugging, all helped and changed the course. For those of you who want to keep a family member home, please read up on these things. Life is still difficult, but it makes a huge difference. Best wishes to you all.

[Hidden]

I agree with you. I always smile at my dad and speak to him in a calm soothing voice. Sometimes they just need reassurance that you are going to keep them safe. I love my father to the moon and back and that drives everything interaction. Thank you for sharing your wisdom and support.