Learning about caregiving

cadelmcg

Hi all.

My mom is 78 years old and was diagnosed with dementia about a year ago. She has a bad knee that she never got operated on that is pretty much crooked. She was getting around on it although she had much pain and was caregiving my disabled dad - doing everything physical for him. Meals, laundry etc. she would forget minimal, trivial things nothing out of the norm form someone with early stage dementia. She suddenly got very Ill with sepsis and lost her ability to walk or even stand on her own. She became incontinent and showed the typical signs of dementia others speak of such as sundowning, not knowing where she was etc. The doctors couldn’t find the source of the infection but the fever finally broke. She never gained back her ability to stand or walk but we got her into w rehab in the memory care unit. Her sundowning has gotten a bit better but she still hasn’t improved the way I thought she would. She misses my dad as he isn’t able to see her at all so the responsibility has fallen on me and my sister to physically come see her. All she wants is him and that is a switch for us kids. Usually she couldn’t stand him and loved being around the kids. Now she will hang up on us on the phone or ignore us to speak to him. I have learned I seem to not be able to communicate well with her as she doesn’t seem to understand me well. The more I try to simplify or explain the worse I confuse her. I’m concerned and want to be realistic with all of this. We all want her home but I’m concerned she will never improve. Would appreciate all and any advice and support.

Thanks!

Anonymousjpl123

Welcome to the forum, and I’m so sorry you and your family are dealing with this. That said I’m glad you found us because people here have very good firsthand experience.

Does one of you have power of attorney? That is usually extremely important - I did this really soon after my mom’s memory issues were progressing and it became critical later.

Also, depending on where she is in her progression, I would recommend you get her into the highest level of care possible that she will accept. Can she stay in memory care for a while while you make a plan as a family? Is it a good facility? Do you think - with help - you can give her what she needs at home?

it was a gut wrenching decision to put my mom in assisted living, then memory care, but I knew for a fact I couldn’t give as much care at home.

Expenses, support, and her condition are all factors. Memory care has proven to be amazing for my mom, and it took a while to get there. I’m so sorry you are going through this. You will find a lot of wisdom to help guide you here.

Emily 123

Hi cadelmcg,

It sounds like your mother's illness exacerbated her dementia. I'm so sorry. You've all been through a lot. Glad you were able to get her into MC and that she's having rehab. Every person with dementia is different, but major illness or stress can push things further along. It may be that she won't return to a level where she could be at home safely.

From what you're describing, she may be at the point where she can really only handle a single thought at a time. Find a benign, simple reason for her being there if she asks and stick to it--like, ''you were very sick, the doctor wants you to do rehab here'. If she doesn't ask, don't bring it up. Talk slowly, stay at eye level with her. Know that the disease affects things like the ability to use logic and reasoning as well as memory. She may have a completely different idea of how she ended up in MC, and she's NOT on board with your version--that might be why she's shut you out bit and wants to talk to your dad rather than you. If that's the case, don't explain or try to make her agree with you, just drop it and divert her attention.

It sounds like you have a lot on your plate. If it seems like the visits are a bit unsettling for her, or they're getting you down, it's ok to take a break. People with dementia very much inhabit 'right here, right now'. There's not a lot of 'I wonder where they are?' or 'why hasn't anyone visited' going on. Pace yourself emotionally and physically.

What about putting her in touch with your dad by Zoom or Facetime? Sometime facilities have tablets you can use. Some folks here like the Amazon Echo's because you can dial in.