Care Giving Conundrum
Been away for a while. Doing my best to keep up. Last week things changed from somewhere in Moderate to Advanced. Still waiting for the new instructions. [:o). Things are changing. Still greeted most morning with "how do I get out of here!". Needs to go home are still based on some kind of family emergency and difficult to distract or redirect. So we go for a ride, of and on through the day and evening and sometimes on in to the early morning. I swear the car make a noise that sounds like "NOT AGAIN" when I try to start it up. even recent snow events have not slowed things up. "It's ok I'll walk, always did and I only live across the street." is the usual reply.
Back to caregiving. We have had Visiting Angels for quite a while (A very good experience ). But are limiting it to 2 hours Mon Tue Wed, By LO's desire to go "home" or somewhere. At times they walk in the door and we are on the way out. They have been patient and creative in Distracting and Redirecting (learned a few tricks) to no avail so we have not expanded the hours. most days we barely get through 1.5 hours before we need to leave to handle a crisis (LO is retired nurse so most involve staffing, critical patient, or family member and she is the only one that can attend to them. (And now hallucinations are ever present, I can't tell you how many nights I have had to tend to critical patients, not bad for an accountant.)
Conundrum: As things progress, I need to expand the hours/days. etc. But I cannot seem to get around this "I'm leaving" issue. Any Ideas? We just had an appointment with Neurologist to discuss change in medication. No recommendations at this point.
Other question: when the time comes we will have to expand to a full shift. Visiting Angels operates on 6 hour shifts. We are not sure at this time how many we could afford. Any suggestions on what time of day would be the best. Thank you
Comments
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Meds for delusions have been helpful for others. Geriatric psychiatrist likely your best bet to prescribe and monitor meds.
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I'm glad you have had success with Visiting Angels. We have struggled with care. Sometimes their fault, sometimes ours. DH also doesn't want their help, just sees them as housekeepers here to help me. Here, in Seattle, we have to sign up for a minimum of 4 hour shifts. I wish we could just do 2 hours. 4 is just too long right now.
As far as time of day, I think you need to decide what would be most helpful to you. I am trying afternoons so that I can run errands but I still can't leave him even when a caregiver is here. Can your Angel drive LO around so you can have time alone? Do you need someone overnight so you can sleep?
I hope you can get the help you need. This is incredibly exhausting without a break. I know.
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Our neurologist has not been great in medication therapy. When Donepezil didn’t work, I basically hit a dead end. So based on the advise from this forum, I asked for and received a Geri psych referral from his PCP. Unfortunately, DH wouldn’t hear of it and flat-out refused. Our PCP then suggested a palliative care assessment and gave me a referral for that (DH is currently stage 5 with one foot in 6). The visiting nurse practitioner and social worker has has been great. She works with his PCP and all of his doctors, and nobody has objected to the meds we’ve been trying. We haven’t yet hit on the exact cocktail yet, but I do think we’re getting closer and it’s given me some hope. I have not said anything re: palliative care to DH; he thinks she’s just one of the occasional visitors we get that takes his blood pressure. And the other positive aspect of palliative care is that they treat the whole family, so I too, get a counseling session when somebody comes by. Not sure if this is an option for you, but thought I would share. Good luck!
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I would echo what the others have written here; it sounds like your LO may have a lot of untreated anxiety that can be causing the "get up and go" behaviors.
It's time to speak with their PCP about what appropriate treatments can be for the anxiety and the hallucinations! It may be related to the type of dementia; Lewy Bodies is one of the forms of dementia most commonly identified by hallucinations, but of course there are a lot of subtypes.
I'm so sorry you're going through this, stay strong!
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(((HUGS)))
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The Agency (and “RIght At Home” another ne we are talking to) both say it is possible for their staff to are trips with LO, but i get a different reaction from the individual Angels. Haven’t checked with auto insurance company about them using our car, which would be more familiar.We even have a problem with family helping. And sometimes even me. I will stop fror gas and when i get back in the car i may get a “who are you”. Makes life interesting. Lately my response has been “I’m your UBER driver , ishkabible. And that seems to end it. Some days it is a moot point as she will routinely sleep time 9-10 and i can do a lot around here. I have a blink camera that alerts me when she moves around, it only picks up leg movement. Oh right at home a local agency has 1 hour minimum. Nights do not seem to be a problem right now. I will sleep in the evenings Nights and sometime during the day when she does. But, would like to greet the caregiver at the door with: Hi!, glad your here, here is what is going on, I’m going »»»»»»»»»»»» for about 1-2 hours, you have my number text me if you need something. But right now it’s Hi glad your here, ill be around the house yard somewhere when she starts demanding to leave. We go for a short trip and the caregiver waits for us or if it is late in the 2 hours…we just call t quits and we go run errands and she will leave….luckily they are not penalized.
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I think i will pursue the visiting nurse practitioner. There is a local agency that provides that
Thank you
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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