Guidance(1)

TanyaD

Does anyone know how to get better guidance on the big decisions like medical and type of care? I feel like everyone looks to me for a decision, when I am not truly qualified to make some of them. It seems like a combination of history, current assessment and my input would be the best method, but that doesn't seem to be the way it works. My mom was diagnosed with Moderate Dementia last summer. I had placed her in an Enhanced Assisted Living which was great for a couple of months until she developed a severe UTI.  We spent a week in the hospital and at the end of that week, she was not even able to stand on her own. I don't know if this is a) the disease progression or b) she needs proper care she to be able to get back to where she was before the illness. I currently have her in a skilled nursing memory care facility with hospice care. Every once in a while I see something that makes me think that maybe she would get better but we just haven't given it a chance. I honestly don't even know who I should talk to about these types of things. It all feels very heavy.

Cyndisaunt

I am in a similar situation with my LO. I will just share my experience so far with the additional disclosure that I have NO IDEA if I am making the best decision. 

My LO and I have seen 4 specialists, 6 geriatric MDs, consulted with 3 Naturopaths (ND) with success with dementia and Parkinson's Disease... I could go on with acupuncture, herbalist, aromatherapy... 

Then my LO in a moment of clarity asked that I stop. No more tests. No more twice a week doctor visits.

We have been taking each day and making the most of each moment. The decisions are now weighed against how to make each day the best. 

I still give her daily cranberry supplements for the possible UTI because this is my 2nd LO with dementia I have cared for... and UTI has been a consistent challenge. And is just the first domino to fall on a slippery slope to more and more medical complications. 

Make the best decision with the information you have and ask questions and then go make more informed decisions the next day. 

hope that helps...

Cyndi

harshedbuzz

At the risk of living up to my screen name, I tend to look at these kinds of situations from a chicken or the egg perspective. So many times, there is a tendency when a PWD has a serious UTI, pneumonia or a broken bone to blame that event for the disease progression. This leads us to hope for our LO to return to some baseline from before the event. But what it if was the disease progression itself that led to the UTI, or the pneumonia or the unsteady gait that resulted in the fall that caused the break?

While it is true that sometimes a hospital stay or surgery can temporarily ramp up symptoms in a PWD that will fade and improve once they're back on their routine within a couple of weeks. Your mom is probably at her new baseline. What are you seeing that makes you feel you haven't "given her a chance to get better"? Did you decline PT and OT? Or was it not offered on discharge from the hospital because she wasn't able to participate in it?

I found these books really useful for end-of-life decision making:

Being Mortal: Medicine and What Matters in the End - Kindle edition by Gawande, Atul. Politics & Social Sciences Kindle eBooks @ Amazon.com.

Amazon - Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness, 5th Ed.: Hank Dunn: 9781928560067: Books

HB

Quilting brings calm

When my mom was in the hospital with urosepsis, she was sent to rehab in a facility that was also a skilled nursing facility.  She got PT and OT there for about a month. Then she was released to assisted living.   The fact that you mention hospice indicates to me that your loved one is much farther along the dementia path than my mom was.  I don’t think hospice would have accepted her if  they thought she  could  improve to an earlier stage of this disease. 

All of us here feel that same sense of ‘ I don’t know what I am doing.  Am I making the right decisions? What if I make things worse by making the wrong one?’  Accompanied by ‘ why me? This is too much for me.  I can’t do this’.   Having all those feelings doesn’t make you a bad person or bad caregiver - it makes you human.  We all just muddle along the best we can with help and support from people on this forum and whatever help we can find in real life. 

mommyandme (m&m)

I’m often saying to myself… “How in the world am I trusted with this job of handling someone’s life this way?”…. “What was I and others thinking as I said ‘yes’ to being my moms primary caregiver and making her life/death decisions for her?” and “This is way above my pay grade!” Hospice is amazingly kind and gentle in their handling of me and my concerns.  Our team is wonderful.  

Im pretty sure that I’m going to live with regrets after she passes on what I did or didn’t do for her, which is daunting.  And even with all the comments of “you’re doing so great for your mom, she’s so lucky to have you, etc…”, I know I’m going to second guess what I’ve done, which I already do.  

The emotional toll on the caregiver of a dementia patient is beyond unreasonable.  She can’t tell me what she wants, feels, needs… it’s just too much sometimes.  It’s way easier to take care of a baby’s life. 

So unfortunately I have no answers but I definitely feel your pain, as we all do.  We are not alone! 

TanyaD

Thank you all so much for your responses. It does help tremendously to know that my feelings are not without validity. 

I sometimes have this feeling that I am totally clueless and have missed some sort of very important information. 

We did pursue PT and OT when we first came to the Skilled Nursing Facility. The first week and a half, she was over drugged on her blood pressure meds and wasn't really able to participate at all. During the second week, we did get that cut in half so she is now able to wake up at least. They continued to try to do PT and at the end of the third week, the therapist said she was at least participating, but still not making any progress. She was just so very tired and it didn't matter what time they tried doing the therapy. I am definitely not a professional, so I don't really know for sure, but what if they just didn't really try? Or possibly, mom is just tired and done.  I don't know.  I did see indications at first that it was a muscle memory issue and not a strength issue, for example in doing Sit to Stand, once she had done 5 she was able to do it on her own.  I told them about this observation, but during the 3 week period, her strength did decline. My gut says it is the disease progressing, and I believe that is what the people at the facility also think, but it is hard when there is no definitive answer. I don't want her to feel like I gave up on her, but I also don't want her to feel pressure to continue.

Thank you for the book recommendations, I have read Being Mortal, but not the other one.  I will for sure read it.