My parents live in their own home. They are 85. My mother is in hospice care; she has terminal cancer. I live 1000 miles away and am doing everything possible. They have hired a nurse twice a day seven days a week, but now they will not let the nurses in????
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1. How long has it been since you were there to evaluate their condition yourself?
2. Have things gone down hill since your last visit?
3. Is dementia increasing? Dementia is not necessarily Alzheimer's -- it can be increasing psychosis (separation from reality), delusions, paranoia, hallucinations, anxiety
4. Who is their primary care physician? Geriatric primary care physicians are really important as they understand aging issues better than non-geriatric, who in my experience (2 parents and 10 different doctors) are CLUELESS. If they don't have a geriatric dr, and there isn't one in their community get them to a geriatric psychiatrist, or if they won't go to a psychiatrist, to neurologist under the pretext of helping them with e.g back pain or something like that. That's what I had to do w my dad and the anti anxiety meds he is now on means he permits strangers in where he wouldn't before. His clueless primary care physician prescribed donepezil (aricept) ignoring the increasing anxiety, paranoia, and psychotic behavior.
5. What are their local social services like? What do the hospice staff/social workers say? is there someone on Staff who can prescribe an anti anxiety medicine.
6. Will you physically being present help them start letting the nurse back in? Will your presence and guidance or authority/trust help them be more accepting?
7. It doesn't sound like paying is the issue--since they paid. Is it strangers in their home, is it the personality of the hospice nurse, or some other reason?
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Here is the answer I gave to someone else previously in a similar situation (I just copied and pasted):
It really helps to sit down with your loved one and just have a conversation. You might want to make it all about you, and how it would really help you out if he accepted just a little help. "I really worry about you and mom, and I want to make sure you have some time to do the things you enjoy..." "I'm worried you are getting burned out, dad..." "It's okay to get some help with mom. I know you love her and want what's best for her." Maybe during a conversation he'll tell you what are his "road blocks." Seniors are really good at covering up to "save face" and might not want to tell you, but here are some common fears that seniors have which may be the reason behind their resistance to getting some help:
1. Fear of losing independence: Getting some help does not mean they are feeble or less independent. This will actually make it possible for them to remain in their own home longer (you can even cite "scientist's studies have shown that seniors who get some help at home stay home longer")
2. Fear of spending all their money: You could maybe show them the math of getting in-home help now vs. the cost of moving into an assisted living or retirement community. Bonus: they can stay in their own home longer, have more independence and spend less money in the long run!
3. Fear of being abandoned by family: Assure your dad that the intention to get them help is to help them stay home as long as possible, and to give him a break, and that you will not abandon him. Getting more help is the opposite of abandonment!
4. Fear of victimization/abuse from caregiver: A new person in the home may be a threat, and seniors may feel vulnerable or cite "I had a friend once who had a caregiver who stole such and such..." You can find good caregivers through referrals from friends (trustworthy), or have someone, you or a trusted friend, drop by when the caregiver is there to make the senior feel the caregiver is "being checked up on" by someone they trust. You can also increase a feeling of safety by going through a licensed, bonded agency (which in some states require caregivers to pass 2 background checks), or run a background check on your own on a private caregiver.
5. Worry about having to supervise someone: It may help to have a job description written up so the caregiver and senior know exactly what is expected, and what the caregiver will be doing, what hours, days, etc. Also, a checklist can be put together and the senior can sit down with the worker at the beginning or end of the shift and go over it together. This gives the senior more control.
I hope this information might help!
You can get ones you can watch from elsewhere and also replay certain days and times when you want to see those times. We never look at it anymore unless we hire a new caretaker and after 2-3 times we know what they are like. You'ld be totally amazed how simply wonderful people are so different when you leave! Oh they are fake, lie, sleep, eat your food and tell stories of how much they sang and did this and that, yet didnt! lol As long as they are safe mainly is the reason to watch . Hope this helps.
If the current situation is telling you something has changed or isn't right, and you are the 'go to' person, then 'go to' them and assess it for yourself.
Your Dad may realize he is not in control and is overwhelmed about your Mom. Maybe your parents have made a new pact between themselves. Whatever it is, they should be heard and their wishes honored.
We all struggle to stay in control and to survive. It is not a simple thing to give up one's autonomy. When elders are condescended to as if they are no longer adults, (you know how some control freaks are, even nurses or paid outside caregivers) they might rebel and refuse to be controlled. I'm speculating on human nature. I would first ask IF they need or want help. Listen carefully:) xo
Contradictory, because some feel that THEY are ultimately responsible for their parents' well-being and could not live with themselves if they didn't do everything they could to get their parents into a situation that they felt was best. Others feel that their parents, though they might be demented or just crotchety, still are adults and their opinions should be in charge to the degree that it doesn't harm others.
I'm always able to see the grey in any black & white situation, so I think that people should be allowed to decide to take too much or none at all of their medications, live in squalor (if they own the building they live in), refuse treatments, live in their own homes, etc, etc up to the point that they start harming their friends, neighbors and family in the process. You can argue that they will by definition be harming their family by choosing to live that way, but I think they are causing pain, not harm. It may pain me to see the way my father lives, but it only causes harm if I allow him to negatively impact my life and my children's lives by what I choose to do to enable it.