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There’s a stranger in my home: adjusting to home care

November 6, 2011

Ok, so I know I said I wasn’t going to write much this weekend, and here I am writing again already. Why? A subject came up on twitter today: what to expect when you get a home health care aide/personal support worker/personal care attendant/etc. They (we) go by many names, varying levels of training, but all have the same goals: To keep you at home instead of in a long term care facility (nursing home), to ensure your safety and overall well-being, and to help you maintain and if at all possible build on your independence. The main goal of a home health care worker is to help their client not need them anymore whenever possible. I know that sounds a bit odd at first, the goal of the job being to make their job obsolete, but it makes sense when you really think about it.

Personally, I have not had a professional home health care assistant. I have been one for two years, with the bulk of my experience being in home care. Right now, I have family members helping me with things like housework, running errands, etc. because I am struggling to maintain both my grades and my home. Anyone facing a chronic illness or short term disabilities will tell you that accepting help or asking for help is not easy. That is a major understatement. It can be a huge blow to your self esteem, it can be absolutely terrifying, and takes a lot of adjusting to get used to. So, in an attempt to help my kick-ass MSers, I am writing this entry to help ease anxieties for those that have recently had home support set up and aren’t sure what to expect. If you have any questions at all, please feel free to ask and I will do my best to answer them. Please keep in mind that scope of practice varies depending on the area and company policies. The easiest way I can think of to write this is in a Q&A format, so here we go:

1. What will happen during the first time the assistant visits?

Usually the first visit starts out like a meet and greet sort of situation. The assistant or their company will call you to let you know what date and time they will be visiting. You may have a discussion with a nurse prior to the first visit (either in person or on the phone) about your preference in a worker and the environment they will be working in. Would you rather a male or female worker? Do you or someone you live with smoke in your home? (some companies will try to set you up with a worker that smokes if you do, or doesn’t mind smoke). Do you have any pets in the home? (so they can avoid sending a worker that is allergic to your pet). If you have a particularly lively animal (say, a large, excitable dog), you may have to put them in a crate or in a separate room when the worker comes over. You may be asked if there are any weapons (ex: guns) in the home. You may also be asked at this point if you mind having a student. You are under no obligation at all to accept a student into your home (more on this one later one). The nurse should also go through your needs with you and set up a care plan. This will dictate what the attendant is to help you with.

So, you’ve gotten the call, you have your date set up. Now what? You may get a second call the day of or the day before your first visit, just to confirm that the date and time are still good for you. It’s the day of your visit, the doorbell rings/there is a knock at the door. They’re here.

Like I mentioned, the first visit is usually more meet and greet than full care. Once they are let in, you’ll usually sit and have a little chat first to get to know each other and to help set up a routine for future visits. This is always a very anxious moment for both parties. No matter how long they have been a care attendant, they will be nervous. You might not be able to tell, but trust me they are. The fear that comes up the first time you meet a patient never goes away. They are just as scared as you are.

At this time you can go over your care plan together (this is usually kept in a binder in your home, and usually on top of the fridge or somewhere very accessible). If there are any things in particular that you are concerned about, speak up, it will be appreciated, trust me. If your care plan says that you will be getting help with light housework, but there is a particular chore that you want to do yourself or help with to maintain some independence, tell your worker. They are not there to do everything for you and treat you like a baby, a worker should never make you feel helpless. Depending on the length of this visit, you may also get to cover some or all of the things on your care plan that day. It is very important that you tell them what you are capable of doing in regards to your care plan during this first visit, and anytime there is any change in what you can do.

2. What can they help me with?

This one varies depending on the company and the attendant’s training. All of this will be covered in your first visit with your assistant or with the setup meeting with the nurse (you will usually get a printed out list as well). Generally though, they can help you with light housework (dishes, laundry, tidying up, sweeping, etc. Usually things that involve standing on a ladder are forbidden due to safety and insurance reasons, so sorry, but no cleaning the gutters). They can also help you with what is referred to as ADLs. ADL stands for activities of daily living. In normal language: every day tasks. Showering, getting dressed, doing your hair (and makeup), transfers (getting in and out of bed, in and out of a wheelchair, etc), that sort of thing. That one is a very sensitive topic so I will go into further detail about that one in a minute. They may also be able to help you with errands such as grocery shopping (this may require extra paperwork if their company allows it, just for insurance reasons). They can help you organize your appointments, prepare meals, provide emotional support, and if their training and their company allows it can assist with organizing and taking medications (ex: they can double check to make sure you have the right doses. If you have a hard time opening pill bottles, they can open it for you and put the right dose in your hand so you can take it. Injections however are a big no-no).

3. Do they have to see me naked?

This one is a huge source of anxiety. If you can safely and effectively take a shower yourself and get dressed, then no they absolutely do not have to see you naked. If you have mild mobility difficulties, vision problems, history of seizures, etc then they will likely stay close to the door or inside the room with their back turned just so they are nearby incase you need help. If you cannot get into the shower on your own but can wash yourself, then they will help you get into the tub or shower and let you wash yourself. If you can shower on your own but have difficulty feeling extremes in temperatures, they can turn on the water for you to make sure it is a safe and comfortable temperature. If you can do it on your own, they do not need to watch you wash yourself. If you can wash yourself but have a hard time opening bottles and such, they can put the soap onto a cloth for you and hand it to you. A care attendant should NEVER wash your body with their bare hands. This is completely unacceptable. They should ALWAYS be wearing gloves anytime they wash your private areas, and should always use a washcloth or loofah when they are washing your skin.  If you seem shy or embarassed you will likely hear them say “don’t worry you don’t have anything I haven’t seen before” or “it’s ok, we have the same parts” (if they are the same gender as you). While it’s true, I’m really not sure how much that helps. For some people it does, for some it doesn’t. But it is true; they are not there to ogle you or judge your body, they are only there to help you. If they see you naked, they are not thinking “oo la la” or “ewww”. Care workers have a mental switch. Once they put on their uniform, they are in care mode. There is no sex in care mode. If they make any comments that make you uncomfortable (ex: if they are trying to joke and lighten the mood, or if you feel that they are hitting on you), tell them that you are uncomfortable with the comment or behaviour. If they do not let up, it’s time to report them to the nurse and get a new worker.

4. Do they have to watch me go to the bathroom?

Another very sensitive topic. Like the last one, this one varies depending on your needs. If you have a hard time getting say from a wheelchair onto the toilet or a commode, then they can help you get on to it. If you can pull your pants down while they keep you steady and standing, then they will let you do that, there is no need for them to yank your pants down in a case like that. Once you are ready to go, they should either leave the room and stay near the door or turn their back to give you some privacy, let you clean up if you can, then help you back into your chair. If you need help cleaning up after going to the bathroom, they’ll put on a pair of gloves and do that for you. If you are in a wheelchair, they will likely quickly check your skin around your tailbone at this point to make sure you aren’t developing bedsores. No checking out your bum for the sake of checking you out, just looking out for your well being. Don’t be shocked if they ask you not to flush before they see what is in the bowl. Again, they are just looking out for your well being. A lot can be said about your health by the state and colour of your feces and urine. They’re checking to make sure you aren’t constipated, dehydrated, etc.

5. Will I have the same attendant every time?

You will have the same attendant whenever possible. So, if you do not get along with your attendant for whatever reason, let the supervisor (the nurse) know and they will send someone else over. Do not feel guilty about this. Not everyone can get along, sometimes its just a clash of personalities. This person is there to help you and make your life easier, and if you don’t get along and dread their visits, that’s not really helping you. If a new attendant will be coming over because your regular person is sick or on holidays, they will call you to let you know this. Usually the replacement attendant will call you a day or two before your regularly scheduled visit to let you know who they are, when they are coming, and to confirm if this is alright with you. They may also call again the day of the visit to make sure that you still want care that day. When you find yourself looking forward to your attendant coming to visit and it starts to feel like a friend coming over, you know you’ve got yourself a good one. When you start to feel that way, I guarantee the attendant feels that way as well. The bond that can build up over time between a home care assistant and a client is something really special. I’m getting myself all choked up now thinking about some of the people I’ve had the pleasure of working for so let’s move on to the next question!

6. Can I change the day I receive a visit?

Absolutely. Say your scheduled visit is for a Tuesday morning. You have to be somewhere else that day. What do you do? You call up the company and tell them you need to change the day of your visit for that week. That simple. You can also tell the attendant ahead of time and they can take care of the change for you. So, if they are over on Tuesday, and you know that next Tuesday you will be out of town or at an event or whatever, let them know while they are there.

7. I’m not feeling well. Today is the day I normally have a visit, the attendant is coming over, but I do not want to or cannot get out of bed. Normally I have a shower during my visit, does this mean I won’t get any care today?

You can still receive your care, it’ll just be done a bit differently so you don’t have to get out of bed. They can help you get washed up in bed, bring you a cup and whatnot so you can brush your teeth without getting out of bed, wash your hair in bed (yes, it can be done without getting the bed wet!) let you get some extra rest while they do some housework, check to see if you are running a fever, call the nurse to come check up on you if you are really sick, etc. If you have anything that might be contagious, they should be using extra personal protective equipment. They may wear a mask and goggles if you have a cough, a gown, etc. If you aren’t sick but they show up wearing a mask, it is to protect you from getting an infection they have that is spread through coughing and sneezing. If you can, make sure you call the company before the visit to let them know that you are not feeling well. It may also help to have someone else come over so they can answer the door for you when the attendant gets there. Some companies will let clients give their attendant a copy of their house key (extra paperwork involved, of course), but you are never required to do this.

8. I don’t like people wearing shoes in my home. Do they have to wear shoes?

Yes, they do. They have to wear closed toed, closed heeled shoes to protect their feet. They will either change their shoes as soon as they get in the door or put a pair of slip on booties over their shoes or both. The shoes that they wear inside your home are never worn outdoors, so they won’t track in any debris from outside.

9. Am I allowed to see my care plan?

Absolutely! It is often kept in a binder with the company’s logo on it inside your home. You will decide with your attendant where to keep it so you both know where it is.

10. My family/friends/neighbours are nosey. If they ask the attendant for details about my care, can they tell them?

NO. This is a MASSIVE violation of confidentiality and can cost them their job. If a relative/friend/neighbour happens to pop over to your house during your visit and they ask the attendant how you are doing, they can give a vague answer that does not give away anything they do not already know. They  CANNOT discuss details about your health without your consent unless it is with their nurse supervisor and in regards to an improvement or decline in your health. So if you’re just having a bad day and feeling grumpy, then ringing up the nurse and complaining to them that about what a horrible mood you are in is unbelievably unprofessional, completely unnecessary, and grounds for a complaint to be filed against them. If they notice that you have been showing signs of depression  that does not seem to be improving or is getting worse throughout several visits, then calling the nurse to express concern about it is part of their responsibility. If they are reason to suspect you are being abused in any way (physically, psychologically, sexually, financially), they have to report it to their supervisor and can help you set the wheels in motion to get away from the abuse.

11. Am I allowed to have someone else come over during the visit?

You sure can! The more the merrier! If you are anxious about being alone with this new person in your home, it is completely understandable. I can’t think of a single first time visit I have ever gone to where the patient did not have someone else with them. They will not however, be able to let this person into the room when they are doing your care unless you say it is ok. If they for some reason need that other person to come in to the room during your care (ex: they see a wound that you don’t remember getting and want to ask the other person if they know how you got it, need help lifting you, etc) then they have to ask for your permission first. If you want that person in the room with you and the attendant doesn’t have a reason to ask for them to be allowed in, just let the attendant know that you want that person with you and they will call them into the room for you.

12. I like my attendant, but they are going to be teaching a student, and I do not want a student in my home. What is going to happen?

You won’t have a student in your home. It’s really that simple. Any time a care attendant signs up to help teach a student, they are required to ask the permission of every single one of their clients before bringing a student to that client. This may be bypassed completely by having it stated in your care plan that you will not accept a student. All that happens is the student merely stays at their home during that time. You can agree to have the student come over, but not do your personal care as well. So, if you are alright with them being in your home but not doing your personal care, your attendant will help you with getting washed and dressed while the student does some light housework.

13. My attendant keeps using terms I don’t understand/I don’t understand the terms listed on the care plan. What do they mean?

Some common terms that you’ll hear or see are:

ADL: activities of daily living. Also known as personal care (bathing, grooming, etc)

Partial bath/bed bath: this does not necessarily have to be done in bed. You may not have to get a shower every single visit, but usually there is a minimum number of showers per week that they have to make sure that you get (where I am, it is 2 full showers per week). A partial bath is washing your face, hands, pericare, and usually feet as well.

Pericare: washing the genitals and rear end. Sounds much more gentle as “pericare” huh?

Skin care: this is more common for people with troubles with numbness and/or are in a wheelchair or bedridden. It’s simply checking certain areas of the body to make sure bedsores aren’t developing, putting on protective creams in certain areas like the tailbone to make sure they don’t develop, and applying lotion to help prevent skin from getting dry.

14. Are they just going to walk right into my home?

No. They have to knock or ring the doorbell and either wait for someone to answer or say “come in” unless you tell them “don’t bother knocking from now on, you can just come in.”

Ok, well now that I’ve passed the 3000 word count I’m starting to dry blanks. If you have any questions at all that you want to see added to the list, feel free to send them to me via a comment or tweet @Mausicle and I will gladly add them to the list and do my best to answer them.

One thing to always keep in mind when you are dealing with your care worker is they same thing they should always have in mind as well:

D.I.P.P.S.

Dignity.

Independence.

Privacy.

Preferences.

Safety.

That is their job. They are there to safeguard all of those for you and never to violate them.

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From → Journal

3 Comments
  1. chuck permalink

    This is an impressive article..super helpful..thanks. Great read. I have far less anxiety now and better prepared. Can’t thank you enough. Will make my transition smoother. Wish you the best in all endeavors and health. 😉

  2. softballmel permalink

    Thanks for this, although I’m not needing home care yet (and have experience working as a support worker like you) I did need the wake up call to ask for help. I’ve been staunchly denying i need any help for a long time. Getting Fredley (my cane) a few weeks ago was a step towards accepting help, I need to do some thinking on this but you’ve made me think about it and admit I’m not managing as well as I could be living alone. x

  3. Chuck: I’m so glad it’s helped. I’ve gotten so used to how visits go that I take for granted how scary it can be to be on the receiving end, writing this helped me too not only as a care giver but also preparing myself mentally for eventually receiving care myself. I know there were a few things I missed and I’m still having a hard time remembering what they were, but I will do a second writeup about this topic, probably more on legal things and personal safety for both the care giver and the person receiving care. Also a bit more on the emotional side of it (like what happens if you’re having a bad day and you just end up breaking down and crying in front of them).

    Mel: I think care givers might have a harder time accepting that they need help, it’s not easier to make the switch from giver to receiver. I remember the first time I hauled myself onto my shower chair and thought “I’ve helped how many people do this and now I could probably do with some help getting this done myself?” It’s quite a blow. It’s really, really hard to deal with at first but once you get some help and see how it benefits your independence it’s a lot easier to accept. I was really resentful about having to have family help me with housework at first, but now that I have help doing that I can spend the energy I would have spent on housework doing actual work earning so money. So in the end, it hurt a bit to ask for help, but because I did it’s allowing me to support myself financially, which feels pretty damn good 🙂

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