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The blind leading the blind
JT42
Posted: Sunday, December 1, 2019 11:02 PM
Joined: 4/20/2019
Posts: 2


I am new to the forum and am hoping to get some direction.  My mother was diagnosed with Alzheimer's about a year ago, but I know it has been ongoing for several years.  (She is also legally blind, hence the subject line.....I am the other figuratively "blind" person.) She has been living with me for about 8 months while we wait on the interminable wait lists for a Memory Care opening.  Her condition has declined rapidly in the last few months.  

I work full-time plus.  I am fortunate that I can work from home regularly.  I have a caregiver 23 hours per week so I can get to the office, but otherwise it is pretty much all me. (I have some help off and on during weekends.)

Since her diagnosis,  no one has talked to me about her condition at all:  what to do, what to watch for, how to learn how to care for her, what to expect.  It has just been "Here's your diagnosis.  Good luck."  

I might be able to get her out of bed to the bathroom for maybe another week.  Then we are moving on to being fully bedridden.  I can't even get her to sit up in bed.  I have no medical training.  She has no medical oversight.  I don't think I am going to be able to get her to the car to go to a doctor much longer.   

When I ask her PCP for anything, it takes forever.  When it finally gets done, her need has surpassed the efficacy of the prescribed treatment.  Frankly, I am having a hard time keeping up with her decline and the bureaucracy is months behind her needs.  

I need the basics:  

1. How do I learn how to safely lift her, transfer her, bathe and toilet her in bed?  (We are similar size and I have to be able to do it alone.  She will not move voluntarily and says even the lightest touch is painful.) 

2. What medical professional should be managing her condition?  

3. What do I not know about what I should be doing?  

Any direction or suggestions are appreciated.  Thanks - Janet 

 

    


Dreamer Lost
Posted: Sunday, December 1, 2019 11:26 PM
Joined: 3/7/2019
Posts: 324


JT42, you have come to the right place but so sorry you have to be here.  I'm sure others will give a lot of good advice but wanted to mention that you should look into hospice care as you say your mother's condition is declining so rapidly.  Your PCP could probably recommend a hospice company to you or I believe you can call them yourself.  They would then come out to do an evaluation of your LO to see if they qualify.  Hospice is covered 100% by Medicare.  They can give you a lot of good information and training along with helping out with bathing your LO as well as nurse visits, some volunteer hours and some comfort medications.  They also can get medical equipment such as hospital beds, wheelchairs, as well as incontinent supplies.
ruthmendez
Posted: Monday, December 2, 2019 12:50 AM
Joined: 9/8/2017
Posts: 2141


You can have her go into ER for whatever reason you can use and then ask a doctor to get you a  referral for wheelchair/transport chair (with removable arms), Hoyer lift, hospital bed, and home health if she doesn’t qualify for hospice. My father has been non-ambulatory for 2 years and recently discharged from hospice. He had hospice for 6 months and is not declining. Any equipment used must be returned. I’m having him put back into home health and I told the care manager from hospice I will no longer take my dad to any doctor office visits, treatments, or whatever. I just need a doctor to come to the home whenever they need to.

I too have found my father’s PCP not helpful when my father was getting worse. All that interests them is forcing infinite lives in dying people.


ruthmendez
Posted: Monday, December 2, 2019 1:00 AM
Joined: 9/8/2017
Posts: 2141


A physical therapist from home health can train you too. Actually, you can get a referral for PT from the hospital. That will be through home health.

When I brought  my dad back home from a 3 day hospital stay and he  became non-ambulatory, I asked his PCP for a referral for PT, Hoyer lift, and transport chair and I checked Medicare online to find Medicare covered DME. That’s when I learned my dad could have been referred PT from the hospital.  Everything is a freaken mystery until you learn things the hard way. And his PCP was not helpful when I asked for a wheel chair in advance. I dumped him soon after when my father got started on home health.


harshedbuzz
Posted: Monday, December 2, 2019 5:29 AM
Joined: 3/6/2017
Posts: 1838


Hi Janet-

You've already gotten some great advice from Dreamer and Ruth.

I would encourage you to revisit the MC waiting list and start looking at SNFs. Where I live, YMMV, MC admission requires the individual to be more physically capable than you are describing your mom. I would ask about this asap, she may no longer be a candidate for the MC whose list she is on. While they will allow a resident to age in place, many will require the family to add a personal aide or hospice services by the time they need as much help as your mom. Skilled nursing might happen faster and be better care at this point. 

Most SNFs have a PCP or gerontologist affiliated with the community who comes to the patients for most medical needs.

Good luck.

HB
JT42
Posted: Monday, December 2, 2019 6:00 PM
Joined: 4/20/2019
Posts: 2


Thank you all for the feedback.  Very helpful and much appreciated.  

(Side note:  I had a call in to PCP's office to ask for home health referral cuz I can't get mom out of bed.  His nurse called back to say he wants to see her in his office! Ummmmmm. LOL!)


ruthmendez
Posted: Monday, December 2, 2019 8:45 PM
Joined: 9/8/2017
Posts: 2141


JT42 wrote:

(Side note:  I had a call in to PCP's office to ask for home health referral cuz I can't get mom out of bed.  His nurse called back to say he wants to see her in his office! Ummmmmm. LOL!)

Yeah, the same stupid thing happened to me...I can’t recall if I asked them if they can have me borrow a wheelchair but I sort of remember the assistant saying they had one there for when we arrive (so annoying and ignorant). My neighbor lent me his old wheelchair and I borrowed it for a month until my father’s equipment arrived. I tried to point out to the PCP our situation and why I had asked him in advance so he’d know better for next time with another patient, but he seemed to care less. I began to despise him...like really despise him. He was my PCP also. Not anymore.  So, even when my dad passes, I’m keeping the transport chair in case I meet anyone with the same predicament and I’ll lend them the chair.

ruthmendez
Posted: Monday, December 2, 2019 8:50 PM
Joined: 9/8/2017
Posts: 2141


It shouldn’t take as long to receive equipment. It just took so long for us because the PCP’s system was down and then the paperwork had to be resent because of missing information he needed to fill out for Medicare. Rrrrr, so frustrating!!
 
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