Wisdom from Dr. Natalie and the Careblazer team

texoma2808 · January 25

I just got this in an email today from the Careblazer team, I hope it's ok to repost, I want to make it clear I'm just reposting, not creating.

But it has such an important message and not everyone gets the emails, so I really felt the need to pass it on. Maybe it will be a message someone needs today; I know I did.

"When someone has dementia, it means their ability to make good decisions declines and eventually goes away.

That's why you are so important.

You are the person helping oversee their safety and health.

This means that sometimes you will make a decision that is in their best interest BUT your loved one may not see it that way.

Your loved one may be upset with you and may disagree with you.

Being a great caregiver doesn't always mean the person with dementia will understand and agree with what you're doing.

In fact, sometimes being a great caregiver means you're willing to make hard decisions that are in the best interest of your loved one EVEN WHEN the person with dementia doesn't understand.

Don't mistake your loved one being upset or frustrated with you as a sign you are doing anything wrong.

In some cases, it's a sign you are doing the very best thing you could possibly do- keeping them safe.

In these situations, it's not your goal to get them to accept, like, or agree with what you are doing.

It's more important that YOU accept, like and agree with what you're doing because you're the one with the ability to understand that what you are doing is helping to keep them safe.

Sometimes the hardest decisions are the best decisions."

This was timely for me today. I'm taking hubby in to reassess his meds to help his anxiety, agitation and sleep.

Hang in there fellow warriors, and don't forget to breath!

Texoma2808

JeriLynn66 · January 25

Texoma, hoping all goes well with your appointment and both you and DH get some relief. Thank you for posting.

Razduck · January 26

Texoma,

Thank you for sharing Dr. Natalie’s message. I have seen that one from her. I signed up for her courses around Thanksgiving time and am really learning a great deal from her and the Careblazers family.

This message is particularly poignant for me today. My DW has been suffering some terrible and swift progression of her Alzheimer’s for 2 1/2 months. Today she was discharged from a stretch of 5 days in the hospital and then followed by 15 days in a hospital rehab. She has had terrible muscle weakness and swift cognitive decline. She had and was treated for a UTI, and was recovering from a broken ankle, and the muscle weakness had advanced to the point that she could no longer stand or walk. Nothing else was found to be responsible for this progression after doing an inordinate amount of tests, imaging, screenings and blood and urine tests.

The doctors have concluded that the UTI, broken ankle, inability to walk have combined to cause her Alzheimer’s to go into overdrive and causing her brain to begin shutting down. He said that in his opinion that my DW has between a few weeks to perhaps a few months of her life remaining. His suggestion was to sign her up with a Hospice Agency and then decide if she would come home or go to a Memory Care Facility. I was so stunned by what he told me that I can’t hardly believe it. I spoke with both of her doctors and her Neurologist, they all concur and share the same prognosis. After that, I took a few days and thought things over and decided to begin Hospice Care and to take her home. We talked about this multiple times and all I heard from her was, I want to go back home, nowhere else.

We came home to begin Hospice Care and have me as her primary CareGiver. I set the house up to make her hospital bed the center of goings on in our home. After getting her settled, the Hospice people began their questions about all of her medical changes, doctors chart notes and test results to determine the medical criteria was correct and that she qualifies for Hospice Care. For my DW, all of this put her over the edge and she got really PO’d at me. She was not mad at me about the Hospice, she got mad at me because she was in a hospital bed in the dining area of our home. She wanted to go into our bedroom and sleep with me. Then I had to tell her that she couldn’t do that because she couldn’t walk, which she knew all about before this, she really got angry.

She had zero concept about what was best for her and for her safety. This was not an easy decision for me and for her to come home, but I knew that was best for her. I knew that her anger had nothing to do with me making a wrong decision, but was about her desire to sleep next to each other again. I’m going to setup an air mattress and sleeping bag right next to her hospital bed tonight and additional nights until she feels safe and secure. I think this will satisfy her needs of wanting me near her, it will help me too.

So this message from Dr. Natalie really hit home in a very true and poignant way.

LaneyG · January 26

Texoma you have no idea how well timed this message is. My husband is hospitalized getting help with med as well. When I visited him he seem clearer but he is irate with me for deserting him and not bringing h home. He would not let it drop. He wants a divorce and on and on it goes. I won’t be surprised if I get this every day til the day I bring him home. And today is his birthday. Both of us so heartbroken. I was thinking maybe I need a plan and bring him home. I need to resist that urge for sure. This helped. I hope all goes well for you. Thanks!

Cecil Jones · January 26

https://alzconnected.org/discussion/comment/195949#Comment_195949

I had just read your post and was hoping you would see this one. I have my wife at home and getting a Hospice evaluation next week...we're always second guessing ourselves.

Cecil Jones · January 26

Thanks for your post.

Wisdom from Dr. Natalie and the Careblazer team

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