Dad has dementia, COPD, pulmonary hypertension.Now seems to need overnight help since gets up at all hours and never know when he'll get up in the am. takes 2-3 hours to get his meds, hygience, dressing, oxygen on etc. daily. Mom has been main caregiver with kids help. This was too much for all of us but Mom refuses in-home help for house cleaning, cooking, Dad care. She has bad arthritis in one leg, has trouble sleeping, does not nap, recently had triple bypass, which belieive it or not, has been the least of her worries after the first month of recovery. She had refused and still refuses to have paid in-home help. Kids have been taking turns staying 1-3 days and overnite at a time and it is getting to be way too much.Kids cannot agree on exactly how much help is needed. Some say they can do OK for several hours in the afternoon w/o one of us - between meds, hygience and preparing meals.etc. Some are willing to try dropping one or two oevernites to see how it goes. Mom has even said she is OK, knows how to dial 911 or call one of the kids who live nearby. Two of us write down what days and times we can do each week and stick to it w/o a big discussion. Best we can do. Have asked doctor to write an order for in-home nursing care for Dad to monitor health issues, check vitals, help with meds. Can they do other care? He said he'd do it but havent heard from agency yet. Another issue: different kids take parents to doc appts. Tend to emphasize doc recs and comments differently according to their own slant. We write in a notebook but it's never enough for some of the kids. Want to see more and more specialists., Help?
If only I would have know about enabling 7 years ago, I wouldn't be the basket case I am now. My parents could have easily afforded to move to independent living and I bet my Mom would have still been with us today if they did. My Mom was determined to stay in their home, doing all the housework, laundry, cooking at 97, or die trying. Well, she died trying. My Mom also had refused any type of caregiving, or cleaning help. And I was a senior myself, so I had my limits, even though my parents still viewed me as being 35 instead of pushing 70.
Time for a sibling meeting on what to do next. Try cutting back to see if your parents realize they can no longer live in that house. When your Mom calls you for help around the house, time to tell her "sorry can't come... can I call a caregiving agency to help you out". Of course, she will say "no" big time. But keep at it.
Some times parents will dig in their heels and sadly only a major medical crises will be a wake-up call... or maybe not. It took my Mom passing [she had a major fall] that made my Dad decide a couple weeks later he wanted out of that house and into a senior living facility.
I wish you all the best of luck with thus.
The sharing of notes is an excellent idea; it sounds like you and your siblings are trying to work together, which is really great.
I think your mother is going to have to have a reality check. As long as she expects the sibs to coordinate her care and refuses outside care, she's going to count on that and won't even consider private duty care.
I would work out with the sibs exactly what they can and can't or won't do, and even back off on what they're doing to just the necessities. Get medic alert pendants for both your parents so they're at least protected that way. Install a lockbox on the door so emergency personnel have access to get in if there is an emergency.
If they have friendly and reliable neighbors, alert the neighbors to what signs might indicate the need for immediate intervention (I don't know if your parents go outside, or how active they are, but neighbors can provide support just by watching your parents' activities).
Your mother will probably resist, claim you're not caring for her, and engage in unpleasant behavior to guilt and manipulate you and your siblings into providing the level of care she expects. Stand firm; you have to draw a line in the sand and help her realize that her expectations are unrealistic, and that everyone in the family is subject to stress and burnout if tasks aren't managed to prevent overload on the caregivers.
Be firm and don't go back on your word if you decide there are certain aspects of care that neither you or your siblings can provide.
I wish you luck; this is a hard situation to manage for several reasons. But your mother needs to understand that she's not the only one who has the right to establish standards. EACH of you do, and the others have to learn to respect that for the good of all.
It won't be easy, but remember that everyone needs to establish a working arrangement before you and your sibs burn out completely.
As to the doctor's orders, not haven't heard from an agency doesn't make sense to me. You interview the agencies, call them, decide on which one you want, and then the doctor's office faxes over the script. Any doctor who's "waiting" on an agency contact isn't moving fast enough.
Once the script is faxed over to an agency, the agency takes control and contacts you or your siblings.
Generally a home care nurse is assigned; PT and OT, speech and an aide can also be assigned, depending on need. But this is only short term; visits are limited and in about a month to 6 weeks (+/-), the agency visits will stop.
This would give you a chance to determine if you would like this agency to provide private duty care, but you can still interview other agencies. I would discuss this with your sibs, develop checklists, and call the agencies. My experience is that they're all the greatest and it's hard to make decisions just based on phone calls because they put their best foot forward.
We had a problem with a doctor's office not moving fast enough once; the doctor's staff was given an opportunity to make the arrangements but wouldn't even ask the doctor's partner to sign the home care order. The agency I selected was on board and they pestered the doctor until they got the script. That doctor's practice was fired; they will never ever be considered again. And I told that to the doctor.
Suggestion to do one sib per Doctor is excellent. Also new primary Doctor. This one took over a week to get portable oxygen delivered. And didn't tell us it's a shoulder harness for use when leave the house for appts etc. we had thought Dad could walk around the house with it. Instead of just now finding out must drag heavy blue box from bedrm to LR each morning and have him drsg long tube around which gets tangled up.
Most elders are like yours and mine. We will end up dragging them kicking and screaming into care or force some poor caregiver to deal with them at home as they gripe about every little thing. Flyer makes a good point about how we tend to enable this denial of help. My folks don't mind a bit when I visit, cook, clean, fix and wait on them hand and foot. In fact they love it. But any talk of hiring help...OMG! WERE FINE!
Your situation is complicated by siblings who must all agree on a course of action. I don't don't how but everyone needs to be on the same page. I'm the last living kid so it's all me.
I've pulled back quite a bit in the past few months. I'm long distance and when I visit the house is pretty grungy but not shocking yet. I still do some basic cleaning and I might serve them dinner but no more crazy house boy crap. I get an eyeball on things and go home. My Mom knows I want them to get help so in our nightly phone chat she always lets me know if anyone had a bath or if they've done laundry or some other chore. It won't last much longer. There will be a fall, diabetic coma or some crisis that will end the delusion that all is fine. Of course I've been predicting this any minute now for five years.
Don't say you'll hire a contractor as that could cause upset; just let your parents know that you'll have it taken care of (but don't say that you won't do it yourself) but their personal care is a higher priority. If asked to choose, the bushes are subordinate in priority.
I've found a few great contractors, including a lawn care contractor, by calling local senior centers in my father's area. Some of these guys really know how to deal with older folks, which makes it a lot easier than hiring a spiffy commercial contractor which sees an opportunity to regrade the yard, re-landscape, and make some money off the client. (I ran into a few of those and scratched them off my list a few minutes into the conversation.)
As to the rest of your first paragraph, I think you're handling those issues appropriately. It's difficult to judge how much to say about hiring contractors, though. We discussed the issue of strangers (especially contractors) coming on site, either indoors or outdoors, when I took the AAA/Alzheimer's caregiving course.
New people, new contractors, new things can frighten and unsettle elders, so bringing in contractors does have to be a slow and gradual process. Perhaps one contractor first on something that can't be mismanaged so confidence can be gained.
Trimming bushes is fairly easy; a good friendly contractor who has worked with older people could be a ground breaker. That's what I found. and I've been fortunate to find some who really understood the issues and helped smooth the process.
Our PCP also knows the specific requirements for getting unlimited pulmonary therapy, a very helpful service provided by the hospital we go to and paid for on an unlimited basis (so I'm told) by Medicare if the person qualifies.
But it seems that your father qualifies for both day and night use. And if I understand correctly, you have both stationary and portable concentrators. The larger one is heavy; these things are bulky.
Your father doesn't have to drag it from one room to another though. Dad's positioned his halfway between his bedroom and living room. But he has a ranch house and those rooms are close.
If your father's bedroom is too far away from the living room, he should have the longer tubes (which is sounds as if he does), but you can also ask for shorter tube (about 7', e.g., ).
What we've done is position the concentrator in the living room, and use the longer cannula only at night. During the day, Dad switches to a shorter one so he doesn't have to drag the longer one around.
Moving the stationary concentrator day and night is too much exertion, and too cumbersome.
As to the portables, if your father is strong enough to carry the one in a harness, that's great, but if not, you can ask for a wheeled one. That's what we have. There are straps to allow it to be carried, but it also has a case and support for pulling or pushing it like one would do with the rolling luggage containers. It's a lot easier.
Contact your DME supplier and ask what's necessary to get a rolling portable, and if any further certification is required by a pulmonary doctor. Then contact the pulmonologist's staff and explain the situation. The two can coordinate to get the portable replaced with a rollable one that's easier for your father to manage.
Although not designed for constant use in the home, there is a possibility it could be done if the portable is plugged into an electrical outlet and charged simultaneously. That would extend the battery life for the overnight period since it's being recharged continuously (until morning when you would switch back. However, I would raise this issue with the DME supplier before trying it (to avoid lugging the stationary concentrator back and forth) as it might put extra strain on the portable, which is in fact designed only for shorter term use and not overnight use.
Dad also has a rollator (as well as walkers). The portable fits into the basket of his rollator, so he doesn't have to try to manage it while walking with a rollator.
Then I came up with an idea, I knew my parents liked the fellow who did their house painting, he also worked as a fireman so my parents felt safe around him. Thus, I would call "Mike" and ask him if he knew of a good electrician, good plumber, etc. Then if Dad needed an electrician I would say "Oh, Mike gave me a name of an excellent electrician", and sure enough my Dad would call the electrician.
These tradesmen had to have a lot of patience as my parents were the type to huddle around the workman watching his every move. If the workmen were working outside, my parents would be watching from the windows or would be outside with them. Helicopter clients !!
I always liked the sign I used to see in some shops:
LABOR RATES
$50 per hour
$75 per hour if you watch
$100 per hour if you help
We finally got the home nurse ordered and she has been so helpful with organizing meds, talking about safety in the home with the oxygen etc. and suggesting one sib taking Mom and one taking dad to doc appts. One person order meds and put into med organizers., Contact her if take a parent to the doc and meds are added, deleted or dosages changed. The home nurse offered nurses aide services for morning bathing, dressing, meds but Mom refused to even try it. Pt and OT are coming for just a vew visits to offer safety and mobility suggestions. Mom says all of these people just take up her time,
We also just had a family meeting. Before hard to get all together, and some felt Mom would feel more comforatable talking with one designated person who could then share the info. Tried that but not much response on Mom's part as to what were her and dad's needs etc. Unfortunately, the only sib Mom ever listens to would not come to the meeting. He wants to tell the others what anbd how to do things but will not read or disucss the written schedule (one sib calls him and asks him to come the same days every week) or notes re doctor visits or imnportant notes for care.
So with nost of us there, one person acted as the leader, first summarizing parent health and changes and sib help provided. Acute needs following Mom's surgery have been resolved and we'd like to discuss current needs and sib burnout with the 24/7 care. She asked Mom what kinds of tasks she and Dad want to have or continueto have help with..She offerd "laundry". Discussed. Asked what else. No response. So leader said let's review some of things sibs have been doing and what has worked, what has not and discuss any improvements that might be needed. i.e. Grocery list :sibs check cupboards and frig for parents common foods, then make list with Mom. Buy only what is on list. Or "Sibs wait on Dad too much": have him get his plate from counter and put dirty dishes in sink. Laundry: Sibs change beds, do laundry. Will not spend time learning how to fold towels and clothes exact same way.
Mom has acknowledged sib burnout before with no comment or suggestions. We reintroduced trying home help agency to come in 2-3 days a week. No response.
One sib did tell us later that "favorite son" says " No way anyone is coming into this house". Lawn care contracting would be easiest on elderly folk to allow. But even tho son has own health and back issues, he" likes to work outside", even tho this work keeps him from doing other help for parents, so that won't happen. So I will be OK and the others will too if they stick to their guns.
In noticed that your profile says your dad has dementia, but I didn't see that mentioned in your question or subsequent posts. If that is the case, then I would strongly suspect that maintaining in the home is not just challenging, but risky, especially with oxygen use. Isn't that rather dangerous? With dementia, you dad would have to be supervised constantly by your mom for safety purposes. Can she do that? Is she in denial about his mental capabilities? With that in mind, him having control over medications is also concerning. He could overdose on meds, forgetting he has already taken them. Reminder and dosage containers will not prevent this. A person with dementia can ignore precautions as if they were not there. Who oversees his health and medication administration?
It's a tough situation, but I think I would take steps to ensure the well being for the parent who is not competent to do it. If your mom attempts to interfere, against common sense and good judgment, then I'd have to take it court, which no one wants, but I'd see an attorney about what evidence is needed. It's a last resort, but I would not sit by and see my dad at risk because he can't reason himself anymore and his wife too stubborn to use good judgment. I would be suspect of her state of mind too. I hope something helpful happens.
forget the notebook, it leads to what sibling did more which is greed.
Plus one has to look at the caregivers age and health. Caring for parents when one is 40 with no health issues is a whole lot different compared to caring for parents when one is over 60 and have health issues. Once we are senior ourselves, our energy level is pretty much cut in half, and we have our own age declines, too. Heavens, we are fall risks ourselves, and who will pick us up if we are caring for a much older parent?
Thus, we need to look at the whole picture and choose what is best for our parents. My Dad is now in Assisted Living and he loves being there, it was so much better than him living at home with caregivers. He's now around people his own age group. And he now get balanced meals, as not everyone is a master chef in the kitchen. And if he falls, the Staff knows exactly what to do to pick him up, then a Staff nurse checks him over to see if 911 needs to be called or not. His medicines are kept in the nurses office and distributed to Dad twice a day... no more missed meds or forgetting to reorder.
Mom was the same, didn't want help. We convinced her that dad needed the help.
The elder care service was good. They sent in a young student working toward her LPN degree. Mom ended up liking her and "teaching her" about housework.
It cost 650.00 per mo for 3hrs 2 days per week. I can't stress enough getting an outside person to coordinate the help being given by the children. That was the most stressful. Read books on elder care. Pass them among yourselves. I planned the funeral details for cremation ahead of time. It is 1700.00 to 2500.00 per person. Do this before a parent needs medicaid to go into a nursing home.
If you use every dime they have on in home care and making the house safe for bathing, ramp, stair chair, grip bars, transport chair, 3 wheel walkers, etc.... do it and if they have a small enough income (check on line for income caps) then medicaid (not medicare) will pay for help in the home when their money runs out.
Get an arm load of books from the library. It will help. call all the elder services in you area and ask questions from a list... long list. All the kids can write down questions. Go to lunch and talk about organizing. I want to say it will get easier.
After a year dad passed away. All were burnt out. Some family members will act out, you will not expect it. But if you read the books it's all in there... you will recognize yourselves. Make sure all understand what Hospice offers and that you have a power of atty for financial and another for health care... and a living will. Look up medicaid planning on amazon. Good Luck God Bless.
I'm currently doing a 50/50 split at my parents and home. When I go home....I super take it easy and just get caught up on sleep etc I try to relax and take it easy. Thank God I have a,super understanding, supportive husband.