My husband and I are both 75. He has Parkinson’s palsy, diabetes, and vascular dementia. I have a caregiver for my husband 5 days a week, from 9 am to 3 pm. He sleeps between breakfast and lunch then again lunch to dinner. I’ve stressed myself out trying to do everything and just can’t push anymore. So, what should I expect from a caregiver?
We also would have caregivers take Mom outside on a little walk mid morning and after lunch.
Since your husband sleeps most of the day is the caregiver getting him up to check to see if he is wet or soiled? She or he should be.
Is the caregiver making sure that he is repositioned at least every 2 hours? (can easily coincide with getting him up to change him.)
What time does your husband go to bed? Do you go to bed at the same time?
If he stays up later because he has napped maybe having the caregiver do a 12 to 6 pm so that she can get him ready for bed. Or even a start later and stay later.
You should not be stressing yourself trying to do everything, that is why you have help. I do hope that at least 1 or 2 days the caregiver is there you leave the house for several hours to get some time for yourself.
I do not expect them to do anything. Actually the don’t have to, my husband is perfectly capable of taking meds, dress himself, go to toilet.
I was pleasantly surprised when one lady did dishes!
Realize they are not maids so why would they clean up or do laundry which usually will be for entire household.
If I want housekeeping done then I hire maid, cleaner and I can tell them exactly what needs to be done.
Recently I paid $500.00 for deep cleaning after moving out of our house.
It is simply not fair to expect people to do both housekeeping and caregiving.
I cannot drive anymore. My caregiver takes me where I need to go, we use my car. I can take care of my own bodily needs . She makes my bed, does my cooking, I hate to cook and it hurts my back to stand for long periods. She makes my bed and keeps the floor clean. I use Instacart for groceries, she puts them away and takes out my trash. I have a cleaning lady that comes once a month to deep clean my apartment. I hired my caregiver through a service. it is expensive, but if Yolanda cannot make it they are the ones who find a replacement for me. Also, she has workman's comp and other insurance.
clean himself: shower/bath, hair, teeth
groom: comb/brush hair, shave, put on deodorant, cologne
help him dress
help him toilet: transfer to and from commode, wipe afterwards, clean hands
meals: prepare his plate of food, light cooking only, feed, clean up dishes afterwards
remind him to take his medications - only a nurse can dispense medications
check his blood glucose - you will need to give insulin
socialize - talk to him, help him with hobby/activity
light housework - straighten up room, clean up messes made by hubby at the time it happens, empty garbage can when full, wipe counter/table after meal/activity
Many CNA's are medication certified these days and can give the clients their meds.
You're spot on about everything else.
I am not sure if I understand your question well. However, in my view, you have to decide who is the main caregiver, you or the hired hand? The roles must be well defined, and you have to provide proper supervision to make sure everything goes as you have planned it.
I was 65 years old when my wife was diagnosed with FTD. I knew that I was not going to be able to care for her alone. That is why I got started with hiring and training aides to provide proper care for my wife at home. I chose the more difficult alternative of hiring directly rather than choosing the service providers route because I thought I could manage the process more effectively.
I quote a few paragraphs of my recent book "Dementia Care Companion", available from Amazon which I consider related to your question:
Do Your Due Diligence
Remember that you are inviting this person into the inner sanctum of your home and entrusting them with the care of someone extremely vulnerable. As much as you may be eager to get started, do not lose sight of the fact that a bad match can be a lot harder to undo than you might expect.
· Ask the applicants about their previous work experience. Ask for references and contact them to get their views about the applicants and their abilities, personality, and work ethic.
· When you find a suitable applicant, do a background check to make sure everything is as it appears and there are no hidden issues or unpleasant surprises down the road.
Prepare and Sign a Formal Contract
· Write up a job description and go through it in detail with the candidate. Discuss work hours, what needs to be done for and with the patient, any cooking or cleaning, and so on. This job description must be flexible so it can be updated as needed over time.
· With the help of your legal advisor, prepare a contract spelling out working conditions, responsibilities, compensation, justified and unjustified absences, the existence of a monitoring device such as a closed-circuit television (CCTV), and so on.
· Have the contract signed by both you and the applicant, and witnessed by at least one impartial body, before having the applicant come to work.
Train the New Staff Properly
The training period for a new aide will vary according to the complexity of the work. Caregiving is delicate work and learning to do it safely cannot be rushed. Take the time to make sure the new aide learns the nuances of care, such as the intricacies of how to handle, move, and feed the patient.
· Before you leave a new aide alone with your loved one, make sure that they know what their duties are and can perform them well.
· Train the new aide in emergency procedures, such as falls and fires. Periodically review the procedures with everyone to make sure they know what to do in case of an emergency.
Provide Clear Supervision
An experienced aide understands the caregiving needs of dementia patients and is familiar with most of the issues that are part and parcel of this condition. However, even experienced staff need proper supervision to make sure that everyone is pulling in the same direction, and everything is done according to the broader roadmap.
· Have a single person in charge of supervision and management of hired staff. Do not let friends and family members bombard a new aide with a request here and a critique there.
· Let everyone know that all suggestions or comments regarding the care process should go through a single individual tasked with supervision and management of the hired staff.
Stay Vigilant
· Use closed-circuit television (CCTV) in the rooms frequented by the patient and the aides. Let the new aide know that you have a monitoring system installed, and preferably, state this fact in their contract. Unfortunately, patient abuse is a reality and people with dementia may be unable to report such cases to anyone.
· Keep expensive items, jewelry, and cash in a secure place. will help gi
Still plugging the book, huh?
Here's the fool-proof simplified way to hire a private caregiver who will be the right fit for the job.
Advertise on a caregiver website EXACTLY what you're looking for.
1) Put it right in your advertisement that any caregivers applying for the position must bring their own police backround check and it must go back five years.
2) Anyone applying must produce at least three homecare work references that you can personally, literally speak to on the phone. Then ask these references about the caregiver and what kind of work they did for the client.
3) Insist on a clean drug test (the potential hire supplies this) that was done within the last 90 days.
When you're doing the interviewing don't beat around the bush about what you're willing to pay or what the work is going to be.
Don't tell the caregiver that the client is a little 'forgetful' and has the ocassional 'accident' when in fact the client is completely out-of-it with dementia and totally incontinent.
If you're expecting full housekeeping services, don't tell the caregiver they will be doing a bit of light cleaning up.
Be totally honest about what the job is actually going to be, what you're looking for, and what you're paying.
You will get the right person for the job providing you're willing to pay enough.
So much of the time I am told by wives to NOT take care of hubby, but there had to be some reason that he got all these hours of care ok'd by the VA. I am sure the wife didn't say I'm just gonna have her come in here and clean the house because that would not be a legit reason to get home health. We are to do LIGHT housekeeping... We don't come in and clean the whole house. We don't come in and clean kitchens and bathrooms and other areas of the house that are filthy. What we do is this: We are to clean up after ourselves, We clean up what we have used, messed up while taking care of our patient. We don't make meals for everybody. We don't do everybody's laundry. We are not to clean up after everybody's messes, including their dishes and the kitchen or anything else the family does. We do not make meals for everybody in the household And we do not go get fast food for everybody in the family. We are not housekeepers. Please do not take advantage of aides.
Yes , There are care plans on every patient but I have families much of the time claim that what I tell them is on the care plan is not what they said they asked for!!!
Just to let you know-- I have been doing this for thirty years and I am now 71 years old. I'm still working doing this and they still try to get me to do things they have to know that we're not supposed to be doing??? . It is sad. And caregivers get abused. And by the way , I have also been a nurse and if they end up finding out, they try to get me to do nursing duties.
You should have refused all of it. If you were hired to do personal care for the husband and light housekeeping then that is what you do.
I myself did this line of work for 25 years in the field (both agency-hired and private-duty) and now have my own homecar agency.
If you are working through a homecar agency, you do only what is outlined in the agency careplan. That is all. I never deviated from what was on the careplan when I worked for homecare agencies. The job pays minimum wage usually or just above.
You think I was ever got up on a ladder and clean a chandelier? Or mow a lawn?
Fat chance.
Often the caregiver has to explain to a client's family what our job actually is. We are not a domestic servant available to the whole family.
Private care is different. The caregiver basically designs their own job. I'd do all kinds of work if a client and their family met my price, but not if they didn't.
Ours is from an agency and I was allowed input to the care plan which included light housekeeping even though only my husband needs personal care. If he begins sleeping most of the day away, I would expect a caregiver to help with other duties.
Since my husband is not bed bound, my expectation is if nothing else is done I want him supervised to avoid falls, assist with toileting, etc. Our caregivers have often offered to vacuum, has helped me change sheets on the bed, clean bathroom mishaps, empty trash cans and other things that need to be done. In fact, one told me not to make the bed before she came because it gave her a bit to do!
It has been said a caregiver is there only to help with the area that the patient uses.... his bathroom, his bed, etc. Well, we share a bathroom and a bed! I had one caregiver ask me... doesn't he use the whole house? I don't expect a caregiver to clean my personal clutter, etc. or do heavy duty cleaning and agree a housekeeper should be hired when I get to that point. But I would expect... at least hope all caregivers would offer to lend a hand especially if the patient is sleeping most of the day.
It really is a personal thing. I have one caregiver that does such a great job with my husband for his personal needs and wants, I don't mind, if some days she does nothing else. It gives me more freedom to work on projects or run errands. However, I am glad to now have the suggestions given here how I can appropriately delegate without feeling like I expect a housekeeper.
You should also have an information packet which explains about different kinds of caregivers and who does what.
CNA (Certified Nurse's Assistants) caregivers are the people who do personal care (bathing, washing, incontinence care, personal hygiene, and some even handle and administer medications if they are specially certified). Some CNA's will throw in a load of laundry or make a light meal for a client. These people are not housekeepers, cooks, or drivers. Their job is the personal care of the client they are hired for.
Homemaker/Companion - These people do not do any hands-on personal care for the client. Their job is LIGHT housekeeping (vacuuming, dusting, mop floors, change bed). They also do laundry (foor the client only). They shop, run errands, cook, and drive, and accompany the client to doctor's appointments or other outings. They work for the client only.
The caregiver is not a full staff of domestic servants for the whole family in the form of one person. Many people make the mistake in thinking they are.
It is not any hired caregiver's job to clean a home that requires heavy duty professional cleaning or to do for the other family members.
Many clients are beyond the scope of practice of a CNA or a homemaker/companion. If such is the case they need a higher level of care.
You have heard the saying 'You get what you pay for' right?
Let me clarify a couple of things for you being as I did this line of work for 25 years and own my own homecare agency.
These agency-hired caregivers you sent away because you felt they weren't earning their salary don't get paid a salary. They are hourly workers. The pay for a homecare worker is minimum wage or just above and almost always no benefits like health insurance, paid sick time, or vacation time.
You claim to not know how to organize or communicate your needs, but at the same time feel the caregivers weren't earning their money.
Let me ask you something.
How hard were you willing to work for minimum wage with no benefits?
I drop fussy, unreasonable client like you from my service every day. Your business is not worth the hoops my employees and myself have to go through to get it. As for hiring private care. Well I did that too for many years, and guess what?
You're paying a fortune for private-duty caregivers and because we work for ourselves, we have no one but ourselves to answer to. So expect to be told to go pound sand and have your help walk away.
If you don't know how to organize and delegate to the caregivers, you need to learn before you start criticizing about them not earning their money.
Now if you are paying for help for both of you, she should be doing for you too. As listed below, she should be doing laundry, dishes, shopping and light housekeeping. And also helping both of you with physical help.
The homecare agency supplies a careplan that the caregiver follows. There's supposed to be a meeting with the client and/or their representative to discuss what the caregiver's duties will be.
I go on these kinds meetings all the time int he client's home. I check out a place and people before I even consider sending one of my caregivers in.
I get people all the time who write down what they want and expect from the caregiver. They have all the plans laid out in black and white.
Then they get told, I don't think so. The caregiver for the client in the home is who gets the help. We are not coming to clean out your basement or wash a week's worth of dishes or cook you and your family gourmet meals. If you expect a full staff of domestic servants all in one person, you don't understand what homecare is or how it works.
* Don't take 'yes' as an answer.
* Ask them how they worked with people with these needs. Ask for examples.
(Critical thinking is required; they have to be able to think on their feet - and this comes with experience. How much experience do they have in these specific areas?
* Can they support / lift as needed?
You write down exactly what you want the caregiver to do.
Create a list of 'to do's' and go over it with her or him.
When in writing, it should be clear what your expectations are.
If you/r husband is sleeping or doesn't need care-giving at times, you find 'choices' that you want done, i.e.,
- wash the dishes
- do laundry
- shopping
* Do NOT allow a person to 'seat there' and be on their phone. Give them a break as needed although caregiving should be more than 'sitting' and waiting.
* If you need a SPLIT SHIFT, ask them if then can do.
* Find things for the person to do when 'direct' interaction is not required.
You check references (ask for them).
You ask for a copy of their driver's license and insurance.
Most facilities require yearly TB tests. You can ask for TB testing and/or Covid testing results if you want.
* You ask for a criminal records check (fingerprinting) at their expense.
This is required at many elder care communities / facilities.
You create an Agreement, in writing, that both of you sign.
"I understand the above requirements and agree to them."
* You offer a two week trial period to see how it is going and review the list - with them - and access how they are doing. This is a business.
You either hire independent contractors directly or through an agency.
If you go through an agency, they will do - or should do - the pre-screening.
Gena / Touch Matters
Check out: https://www.strutherspn.com/front-page
The agency we use has been certified by this organization in a special training to provide to their caregivers.
The main thing to remind caregivers is that every PD patient is unique with similar symptoms.
Changing bedding
Cleaning the bathroom, in general light housekeeping is normal for a caregiver.
Changing your husband when he is wet or soiled.
Just having someone there so you can run to the store.
Having someone there so you can go have lunch with friends, attend a Support Group, get your hair done....
And maybe get your husband out for a walk (only if it is safe to do so. He could be pushed in a wheelchair, or if using a walker make sure your husband has a Gait Belt on to make it safer for him and the caregiver)
I used to fix my husbands lunch and the caregiver would heat it up and give him lunch when I was out. I would make a LOT of soups and freeze them in pint jars and take a few out and thaw them in the fridge, the caregiver would pull one out, heat it up. Easy lunch.
The caregiver can also be tasked with giving your husband a shower a few times a week. That is one less stressful thing you have to do.
(sometimes caregivers are a lot better at giving showers than a family member is.)
What does dh need, precisely, when it comes to toileting, feeding, bathing and transferring? What isn’t your caregiver doing regarding these?