Newbie

auntiesparklez

I'm new here because part of me is in denial. I got a call Friday from the nurse at her Speech therapist that my Mom wasn't safe. I've been told that she is not independently safe. She won't believe me because they haven't told her directly. She stayed with us & sometimes it was completely awful. She yelled. Said we were holding her hostage. Then the next day she wanted to review the places we suggested. She started telling people how much she liked it. It's just me & my husband. My brother won't get involved & we aren't even speaking because he says I'm taking over and planning my mom's death... no I'm getting things ready so when she is no longer of sound mind. I cry daily. I have the hardest time relaxing. I'm on edge & snippy. Any ideas how to relax or become emotionally controlled. I feel like I'm eating, sleeping & breathing dementia

Emily 123

Hey there Newbie,

You're taking the right steps. You're correct that you're in denial. Dementia is tricky because we see the person being outwardly whole, but inwardly their brain is much more limited in how it can process information and control emotions.

The problem is that we want to respect our parents, and we don't see the extent of their limitations at first. So we try to put off or include them in the decision making process. Between the memory loss, the parent's inability to see that there's an issue (anosognosia), and the loss of reasoning, it's a bit futile to expect them to be able to weigh in--you'll get a different answer anytime you ask about things. She probably doesn't remember your conversations but she remembers the negative emotions around them, so back off on telling her about what you or others are seeing. It makes things harder for you. Try basing your day to day interactions on her mood/perceptions, include and reinforce her when she's positive, deflect and defer when she's negative, & press onwards with plans. (Also, it's ok to not take her to look at places-you need to make the decisions.)

If you have a third party saying she isn't safe, then it's time for moving fairly quickly with placement. I know you feel like you're on a hamster on a wheel called 'Anxiety'. I'm a big list maker, which helps me gather my thoughts and prioritize what steps need done, phone numbers, etc. I find that solo repetitive exercise to music, like stairclimber, exercise bike, or walking, lets me sort out my thoughts. Plus endorphins-that's got to help, right?

Your brother's in denial. A person who won't get involved in the nitty gritty day-to-day wrangling of a person with dementia doesn't get to lob cheap pot shots. It's absurd to equate the need to adjust for someone's aging with death. It's not caring to let your mom out in the world if she doesn't have the capacity to protect herself. Put him on ignore for now or ask him to spend 3-5 days with Mom to get a feel for what her needs are. At least share this pdf below with him so he can understand the changes if he chooses

https://www.smashwords.com/extreader/read/210580/2/understanding-the-dementia-experience/Medium,Arial,Black,White,One-and-a-Half

Are you POA? It will make things much easier if you are...

[Deleted User]

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Aging Daughter

I wonder if anyone has any ideas or advice about this problem. I arrange 24-hour care for my father. I work with Home Health care and Home Care agencies (for those who don't know, these are two different kinds of agencies and only Home Health Care is likely to be paid for by Long Term Care). My problem is that agencies will not allow you to interview potential carers. As a consequence, you have to try them and pay for them even if the agency has sent someone unsuitable or a bad fit. I am not overly picky, but my dad has special needs which means that I need carers who really know what they are doing. Too frequently, especially with the night carers, I am sent people who can't do the job. But I could find this out, at least some of the time, if I were allowed to meet and orient the carer ahead of time. I am willing to pay for a couple of hours while I have my regular carer present so that we can assess the new carer, but that is never permitted. As a consequence, my dad has to suffer with unsuitable, sometimes awful, carers until we find out on the job that they don't work. Dad is pretty good-natured about it, but why do we have to put up with this? Okay, I am ranting, but I can't be the only person with this problem. It is particularly problematic with dementia, since my dad doesn't always remember what happened during the night. Fortunately, I have cameras, and I stay up watching the caregiving with everyone new. But that means that any benefits I get from having someone there is counterbalanced by the nights I have to do without sleep. Does anyone know of a better way to do this? Thank you!

Hope65

I want to validate your feelings and everything you express. We're all on a really hard and unfair journey. I also cry daily, am often fatigued, and atypically short-tempered. And the caregiver task list seems to get longer each day, despite what efforts I put in. Some days, im completely stuck and cant do anything.

On You Tube, watch Teepa Snow's video series. Ive just started. https://youtube.com/watchv=MA9s2vZflw4&feature=share8

She's a dementia specialist with some very supportive and empowering info for care partners.

And stick around here. There's pretty uch always a caring someone around. Additionally, the 24/7 ALZ helpline is worth the effort: 800.272.3900.

Might i also gently suggest that if you don't already work with a therapist, ideally one eho is familiar with dementia. it could be worthy of your consideration. You can express intense feelings and learn coping tips to hel weather the storms.

Lots of strength being sent your way. You're not alone