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Pizzaboy65 Asked February 2017

How do I know how far we are through this journey?

And is me keeping mom in a home she doesn't recognize anymore. Mom had the first signs of dementia I remember 12 years ago.. I am sure there was earlier signs.. my mom hasn't driven in 4 years.. she hasn't cooked in 2 hasn't used microwave or washing machine over a year.. hasn't even tried to pay bills in 18 months.. most days she can't write anything and has problems completely most thoughts..


6 months ago I had people with her everyday a week for 5 to 8 hours.. she wandered away for first time in October since a hospital stay in December she has someone here 24/7.. she doesn't recognize her own house.. and doesn't know about half of the family members with pictures on walls.. she sometimes thinks I am her husband that past 15 years ago not her son..


In the past month her sleep has got really erratic.. sometimes maybe sleeping a total of 7 or 8 hours over 3 days..


My mom was a nurse for 35 years.. when people take care of her she feels like she is still at work.. she tells me why do they keep bringing me back I keep quitting I don't want to do this no more..


In some ways I think my mom has given up.. she has told me a couple of times she would rather be in a nursing home.. she loves being outside and flowers.. today it was 60 I told her it will be nice when she can set on porch in warm sun.. she said yes but she didn't see it happening she wouldn't be around that long..


My mom is only 77 she has had chronic health issues her entire life lungs and kidney problems and of course now we battle UTI's she has zero bladder control left.


My mom until a year to 18 months ago was pretty good when we didn't have an infection.. in the last 10 months she has changed dramatically.. now when she is good she is what I would of called pretty bad a year ago.. when she gets bad now.. she can not even get up herself.. -


For years I thought my mom was good and where she has week immune system I thought infections made her seem worse then she was now.. I think my mom is a tough broad and she is really a lot worse then she lets on..


My mom has my dads life insurance money.. so money wise I could pay for her care at home another year or so.. I have been lucky to find a lot of people to help..


But now my mom seems constantly in panic.. maybe keeping her at home is not the right thing.. I have always said I want my mom to have great quality of life we have no concern about how long she lives..


Right now I feel I am letting everyone down, my mom, because I can't calm her, my wife and kids because the time I am not there and my work because I cannot concentrate..


If my mom continues declining at this rate I don't think she will be alive this time next year but what if it is 2 years or 4 years or more..
how do I know when to do what..


I am very much a man of god.. I think I will know when but not sure... I am not sure I could handle my mom in a nursing home begging to go home...

Christine73 Feb 2017
I echo Veronica1's answer and I'll add this. She asked you to take her to a nursing home. Call 5 to 10 homes and set up tours. Ask questions. Pay attention to how the staff treats the resident. Pay attention to how the place makes you feel. Make SURE you get to tour the actual unit mom would be placed in, not just the nice short term units they'll want to show you. Then, have her do respite there for 30 days. No commitment, just a trial run. If you're both happy, she can transition into long term there. If not, just come pick her up.

I will say that if she's a retired nurse, she probably know exactly what she's asking. Honor her wishes.

Veronica91 Feb 2017
One thing that has not been suggested is to try memory care for a couple of months and see if she settles down especially with the right drugs to control the anxiety. If you find it is not the right choice you can rethink your decision and take her home again with 24 hour care to relieve your family.
Before you consider not treating the next infection I think you should consider Hospice if she is appropriate. I am not saying it is wrong just feel you need support for that kind of decision

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Sunnygirl1 Feb 2017
That does explain a lot. I would discuss it with her doctor. Ask about adequate pain treatment and if Hospice is advised. My LO has been receiving Palliative care for some time and I'm now getting ready to adjust her treatment even more, considering her progress. I've been reading about how treating infections at some point becomes quite challenging.

Does your mom have an Advanced Medical Directive?

Pizzaboy65 Feb 2017
I found your answer very helpful.. she seems to be all over the map as far as staged go.. she makes a lot of verbal noises and loud breaths all the time..

I sometimes think the next time she gets pneumonia we shouldn't treat it.. But then I think I don't know my mom worked in a nursing home and worked with these kinds of patients I think a lot of it.. is she realiz s it happening to her..

I have a notebook full of things mom and me talked about when she was good.. so I know what she would want.. as far as pain mom has a lot.. fibermiagia both knees replaced twice broke L1 about 7 years aho

Sunnygirl1 Feb 2017
It sounds like she has been progressing with the dementia for a good while. I don't think I would consider it that she is giving up. It's that the brain damage takes away their ability to do the things they used to do. I would discuss it with her doctor. Is she ready for Hospice? I would explore meds to help with her anxiety. There's no reason that she needs to be panicked or scared. I would also consider that she could have pain that is making her anxious. Some dementia patients have pain that they cannot verbalize.

Have you looked at the chart for Stages of Alzheimer's? You can look at it and see where she is, but, that doesn't give you an answer of how long her journey may continue. I know it's difficult to just see the decline and not know how much longer it will be, especially if there is no quality of life. I do that with my LO. She's in the Severe/Late Stage 6/7, but, she could remain there for years or maybe not. I just try to expect anything.

If the funds are being depleted, I would go ahead and explore what kind of benefits that she might be entitled to receive, either for Memory Care or Nursing Home, in case she needs them.

I wouldn't look at it as letting someone down. When you get the LO the level of care that they need, you are doing your job as a child. To me, that's something to be proud of.

I hope you find some answers that will help.

Pizzaboy65 Feb 2017
The back at work part is not a good thing causes lots of anxiety

pamstegma Feb 2017
Dad's life insurance money could get her into a nice facility. If you can private pay for two years, almost any place will be glad to have her. She might even think she is back at work there too.

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