Still able to do ADLS, make VERY simple food, etc. I need some suggestions as to what to have the caregiver do. Where is a good place to start with in-home assistance? I know the duties will change as the disease progresses. Sharing your experiences would be very helpful. Thanks!
Can he still be taken out? Like to an activity at the senior center, or to a movie, or a restaurant? They can do things together while he's still able. Of course the caregiver will help with hygiene care (showering, bathing) and will clean up after the client themselves (like doing their laundry, making or changing their bedding, etc...). The caregiver is not a housekeeper for the whole family though. Not that you would make the mistake in thinking so, but many people do make that mistake and think that our job is to be the housekeeper for everyone who lives in the home. It is not.
If the caregiver starts taking your husband on outingsand you give them cash to pay, have them save the receipts for whatever money is spent. Also, you can agree with them privately that you will pay for their lunch or movie or whatever because an agency-hired caregiver gets paid next to nothing and chances are she (or he) can't afford to join in on a lunch out or a movie with a client.
Dad's caregiver came in at 7 a.m., picking up the daily newspaper from the driveway, get Dad up for the morning, helped with showering and picking out clothes [without help Dad would wear stripes with checks], and helped him walk down the stairs. She would get breakfast ready, Dad was a cereal type of person so that was easy for her.
While Dad read the newspaper, his caregiver would do light household chores. The Agency had a 3-ring binder that she would check so she wouldn't be duplicating chores that were done by another caregiver's shift. Each shift would write what they did and how Dad was doing.
The caregiver would take Dad outside for a short walk with his walker. Usually Dad would nap afterwards. Caregiver would get lunch ready. Afterwards, if it was a nice day Dad liked to fuss with his garden and she would help. She enjoyed helping outdoors.
When need be, the caregiver would take Dad to his doctor appointments, and afterward would call me to let me know how it went. Usually doctor appointments were set an hour before lunch time, as Dad loved going to Burger King and he would treat the caregiver for lunch [otherwise, the Agency required their caregivers to bring their own meals for their shifts]. Dad liked this caregiver as they had the same background, both born and raised on a farm. And she had a good sense of humor as Dad was a punster.
Then the 2nd shift came in, the caregiver checked the 3-ring binder, and did what she/he thought needed to be done. The caregiver would get dinner ready. Dad liked TV dinners [yes, I know high in sodium] but at his age he might as well enjoy his meals. Usually the 2nd shift were much younger, so there wasn't the conversations that Dad had with the 1st shift.. Same with Dad's 3rd shift. Dad didn't mind those caregivers being on their cellphone, less awkwardness trying to get a conversation going.
When Dad sold his house, he moved into senior living. He was able to bring along his 1st shift caregiver and that gave him a routine as he started to journey through dementia.
The importance of engaging with the client, talking with them, discussing a show or book, going on a walk together etc tends by many to be overlooked, as some folks think of the caregiver as a housekeeper who should be constantly busy neglecting the more important need of companionship. If anything more than washing the dishes, wiping down the table and light laundry are needed then it will become necessary to hire a housekeeper if that isn’t something a family member is willing to do.
What planet are you living on? NO ONE who has an agency-hired caregiver is also going to hire a housekeeper.
I was an in-home caregiver for 25 years. Nearly 15 of those years were working for carw agencies. Then I went private duty working for myself. Most clients, families, and the homecare agencies they work for expect them to do the jobs of a full domestic staff as well as engage the client and provide companionship.
The agency will tell a caregiver they don't have to stand at a kitchen sink for 3 or 4 hours at a time washing a month's worth of dishes, but they do.
They say no one expects the caregiver to get down on their hands and knees and scrub a filthy floor that hasn't been cleaned since the Eisenhower administration, but really they do. Of course the caregiver can take a break to change a soiled pull-up, shower them, and work on the puzzle that every homecare agency commercial shows an old person doing with their caregiver.
Agency hired caregivers learn quick that if you don't cover everything you will see your hours greatly reduced. You will see no work at all coming in for you.
This is the reality of agency-employed caregivers. When you're making the good money in private care most people expect even more.
How many hours and how many days are the caregivers coming? Do you already have a cleaning person? That's where I started was with someone to clean my mom's areas, change her sheets, etc.
The caregivers I had for mom (before assisted living) did everything for mom when they were. here so that I could leave or tend my garden or just stay in my room alone and exercise, etc.
So, they came at 9 AM and made her breakfast, gave her her pills, cleaned up from breakfast, unloaded the dishwasher as needed, had her take her shower and get dressed, did her laundry, played games with her, did exercises with her, took her on outings sometimes, checked on her incontinence supplies, encouraged her to drink her water, etc etc. Everything I would have been doing if they weren't here.
Basically they had a balance of some chores and some time to chat and play cards, etc. It was nice for mom to have a buddy and someone to keep her on track since with her dementia she was often confused as to what she should be doing.
I'm not sure how your hubby is, but I also directed the caregivers to be assertive. If you want him to do X, Y, and Z or have XX for breakfast, then tell them that's what you want done. I told my gals not to ask mom what she wanted for breakfast cuz she wouldn't know or would always choose toast where I wanted her to have eggs or yogurt. Or she'd say no to almost everything. So instead of "Do you want to do some exercises now?" I learned that we had to say "OK, time to do your exercises". She could still resist but don't ask a yes/no question when the only acceptable answer is yes but you'll likely get a no or I don't know.
I'd also tell the caregiver that you're new at this and trying to figure it out yourself so if they have any suggestions, you're open to hearing them.
If you post with more details, you'll get more answers that are more helpful.
Whose experience am I going to speak from except my own? I worked for care agencies for 15 of the 25 years I have been in the field of homecare.
I have NEVER worked for a client (even hospice clients and ones who were chronic invalids who could do nothing for themselves) who in addition to their caregiver had a separate hired housekeeper. I have NEVER worked for a family that brought in a separate housekeeper to do the cleaning.
I never knew a caregiver in the field and I know everybody, who ever worked a homecare job where there was a separate person hired to clean the house. In cases where the client lived with family, they kept up on the cleaning and chores.
This is the real world of homecare. So please, don't knit-pick my language. The truth remains true even if the language used to tell it isn't poetic.
I currently own and operate a homecare agency. I went and opened a case last week which we turned down. An elderly woman's daughter called about getting some homecare for her mom who lives in a mobile home. She described the needs as being a bit of light housekeeping, make her mom lunch, supervise her with hygiene care, and remind her to take her meds because she's a little forgetful.
The reality was a mobile home so hoarded and filth that is should be condemned. An elder completely out of it with dementia to the point where she was clearly sitting in her own sh*t and could not tell me what day it was or her own address. I asked. After 25 years of service I can also tell when a person hasn't had a bath or shower in a very long time and if their clothes have been on them for weeks. I told the daughter I won't send one of my employees into conditions like this and that I was duty-bound by the laws of my state to report to APS on the living conditions.
People who hire caregivers don't unnderstand what 'light housekeeping' is. A 'little forgetful' is not completely out of it with dementia.
Homecare agencies only concern is putting a worker in the house and collecting the money. They don't care what they're sending them into. I do because I was that worker for a very long time.
There's an exception to that Homemaker comin in for light household chores and that's with folks who have a PCA and RN case mgr through County Waiver programs.
I had several on my caseload when and RN Case Mgr working for a hospital-affiliated Home Care and Hospice agency. We had a 50 mile radius service area, on call 24/7, a cadre of 12 RNs, about 10 LPNs, quite a number of CNAs, and Homemakers, all but the RNs had a scheduler to keep all the needs covered.
This was over 20 yrs ago and we know that healthcare isn't what it used to be. Even then, I had to pull teeth with the County case mgr to get allowance for the 1-2 monthly visits I needed to make for client assessment and staff supervision; my documentation was free to them.
I'd imagine that these days, many Home Care agencies choose not to take Waiver clients due to the low reimbursement for services, leaving only CNAs and Nurses who are not supposed to be doing any home-related duties.
We also declined to take some referrals when the elderly could not safely remain in the home with added services and those resulted in family making other arrangements. We also dropped a few clients due to unsafe situations in client's homes. But, we had a few rural clients where we went through cow gates and trod through manure to reach the homes!
As I see it with any progressive disease retaining independence is the most important thing.
Not only for confidence but, encouraging to move, live normal and learn new things.
EMERGENCY CONTACT Information.
If you are going to be leaving the house. Your cell phone number.
A second person to contact
The home number if there is a land line.
The address of the house.
Your full name
This sound ridiculous but in an emergency whoever is calling 911 should be able to give the full address, the name of the person needing help. And the dispatcher will ask for phone number in case the call is disconnected. (calls made from a cell phone may be bounced all over and not all areas have "enhanced 911")
If there is a POLST or DNR it should be visible
If the person getting care is on Hospice the phone number of Hospice should be plainly visible. (Hospice number is now the emergency call NOT 911)
Also include the patients doctors name and phone number (in case 911 responders need this info)
Also put together a basic First Aid Kit.
Flashlight
bandages
antiseptic ointment
hand sanitizer
Gloves
(I also put emergency contact info on the lid of the plastic box I put my First aid kit in)
The agency provides all the requisite disinfectant and gloves, etc, at least, the agency I worked for did so; we had a set up in the bathroom or near a kitchen sink of all those protective supplies.
Everything has gone in a downward spiral now, compared to the quality care we provided some 20 plus years ago.
Some caregivers were excellent but I had to let some go. Being a companion is part of their job! You will need to do drop ins to check activities or have cameras installed. We did both.
Good luck and you will feel a huge relief. Remember if your mom has complaints it may or may not be the truth.