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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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Usually the "reason" is just plain wanting to keep their independence and my mother's generation were very private people. Go and see what they need done.
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As you see the advice ranges from one extreme to the other. You don't give a lot of detail on what you have tried or over what time period this has occurred. I'm in a similar but different situation. I live 1500 miles away and let my dad have his own way up until April. When i arrived in April, he had declined precipitously in the previous 3 months and is no longer capable of living by himself (90 yrs old). Here are some questions you might consider:
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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It is well worth the time to go and see for yourself if it is paramount to you, in my opinion. Things can be worked out to make it happen. I just would not feel comfortable not knowing for myself.
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Ladygolf, I had a situation with my grandmother that needed intervention but I could not personally go because it was a six hour round trip away and I had a visually impaired and not well mom that needed me, a FIL that relied on my husband for help because of illness and a four year old. So I called social workers at the hospital, the pastor at her church and others to get a handle on the situation. Everyone said, "well, here is what is going on but you should come down and make the trip." So I weighed my options and deceided that instead of putting five people in a mess for one person, I wasn't going to do it and I stayed put. The outcome? My Grandma continued to play by her own rules and lived her life just like she wanted to all the way to the end. I found out others had addressed the situation with her and she turned a deaf ear. So sometimes you just have to let things be. Good luck and hugs.
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Go home and personally access the situation yourself. Your parents are most likely worse than you believe them to be. I am stunned at the number of people who are oblivious to their parents condition....they are good people but they are so caught up in their own lives that they have lost sight of their own parents condition and needs. They are either afraid or leery of strangers in their home, upsetting their routine....maybe your Mom asked your Dad not to let them come back. Maybe they are afraid of being robbed. There could be 100 different scenarios, but you need to get home and find out and help them re-establish the help they need.
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Have you asked your parents why they won't let the nurses in anymore? Will they talk to you about this? You could report your concerns to Adult Protective Services, but there might not be much that APS could do (i.e. they can't force your parents to let the nurses in if they have the legal right to make their own decisions).

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!
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This sounds similar to my recent situation. My rational father only allowed limited in-home help (light cleaning twice a week). The house was a mess, everything he had to do was an ordeal and difficult. He was the cook and primary caregiver to my mother. We hired people only to have them sent away with him telling them they weren't needed. They have the money but, at 93, he was saving for the future. My only sibling and I live far away and had just accepted that he was going to do things his way. I knew, eventually, something was going to happen to change that and it did. He fell and broke his hip and is now in a rehab facility for at least four weeks. We now have around the clock care at their home for mom and we intend to keep it when he comes home. It took an incident like this to force the issue. Unfortunately, that is what happens many times.
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They are in home surveilance camera systems. Its like a nanny cam/grannycam. I have seen them on amazon and there is no monthly fee. If however you get it thru verizon and have them do it all, its $29.99 a month as the commercial says I guess.You can get cameras that are obvious, or not. I used to watch my caretakers from my work computer when I could and one time I saw her fall down the stairs with the caretaker. I got help there before she even called me. Mom was fine, just 3 front stairs but scary because 2 years before that she had a broken hip. Unless you're rich, I would just set it up yourself and not pay a monthly fee like we do.
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.
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This is a bit off the track, but can someone tell me about theses web 'spy' cameras? Are they like the kind you see in convenience stores? Or are they visible in the room? Where do you get one? How does it work?
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You do not mention your father. Does he have dementia or just caring for your mother? First of all, if she is terminal she probably (or both of them) have decided there is nothing more anyone can do. If they have their faculties, then it is their right not to have help. If however, your father has dementia, then you might want to call the police to make a "welfare check" to make sure they have not decided to commit a murder-suicide pact. If the police find everything in order, then nothing is done, but if they suspect something else, they can call adult protective services. Perhaps you can make a trip to see for yourself how they are doing? If not, you are not going to know what is really happening (have they stopped eating, house unkempt, dirty, etc.)? Have you talked to the nurses who had been caring for them and what was their impressions? I would still like to know how your father's health is. Best wishes.
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As Isn'tEasy explains, it certainly does depend on a lot of things. Some elders are rational until the end, some cannot do anything for themselves.
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
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As you can see, the advice you're getting depends very much upon how much you, the adult child, is able to accept your parents' decisions. Call APS, don't call APS, visit often, spy from afar.
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.
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and we never knew about his meds being toxic till too late cuz he would not even share anything bout his health with us kids...he always sed you all got it ruff enuf.....enuf on your plate, just take care of yourselves! so within your family dynamic..do whatever you can to get as involved as you can!!!
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Yes go there, talk to them, interview new nurses and set up cameras so you can watch them at all times on your computer or iPhone. Scary stuff, send someone over to check on them until you get there if you can, good Luck
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YES PLEASE GET APS INVOLVED PUSH ANYTHING, we had the same problem and ours did end well....dad is so stubborn...he passed away due to overmedicating himself with his own RX...his RX was toxic and it only took one or two overmedications to "due him in". please do everything possible you can. I wish I could be more help but I cant tooooo painful for me!!! gotta go wish ya luck ((((HUGGSS))))
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Please hop on a plane and spend TIME with your parents. Are you the only child? Do you have POA? They need intervention now. Please go see them.
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Would a professional manager be helpful? Does anyone have experience with this? http://www.caremanager.org/
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It sounds to me like something has happened, and they do not want / trust them. Maybe a nurse said something they didn't like? From experience, it is easy to scare or frighten the elderly unintentionally. I live 1400 miles in FL and this last 6 months have been home,IN, many times. Going home is really the only way you can find out what is really going on. Good luck.
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Is this about a money issue or is it that they don't want ppl in their home, or something else?? Do they speak with you on the phone daily? Is Mom cognizant of what is going on and does she need hands on care? How is Dad's mental health? Is he capable of making good decisions? Lots of questions that may need a personal visit. If you cannot do that is there another sib, neighbor of church member that could check in right away so you know who you need to call to get this resolved?
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You may need a couple of trips to see for yourself exactly what the situation is. BTW you can get a web camera that works on a cell internet connection to monitor their activity if you cannot be there. It's like spy stuff the average joe can now get.
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Personally, I would keep APS out of it. I would take a trip and see what is what in person, you can't assess this from 1,000 miles away, then take it from there.
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i would suggest the adult protective services also . If its just a matter of mom and dad not wanting strangers in the house it may be time for mom to be moved to a hospice care facility.
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If I were you, I'd be very concerned and have to either call Adult Protective Services or the police right away if I could not get decent answers from my parents on the telephone. Why won't they let the nurses in? Is it something the nurses have done? If so, explain to them you will get new nurses out, but that they (your parents) and you NEED the help - if anything - just to see that they are doing okay. Good luck!!
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