See other posts in this series here.
We talked about discharge planning from the hospital. This is part of it, but it is wise for you to think about some of the differences/benefits/ downsides of each of these choices, specifically home health care and rehab. Often, there is no “right” choice across the board for a specific diagnosis. It depends on many factors for you and your loved one.
Some of the factors to think about when you are deciding whether to choose between home health care, short term residential rehab, outpatient rehab and other options are as follows:
- Which ones you qualify for…basic, but very important!
- Is there only one caregiver (you) with very little support system or does she have family or friends who can give her a break on occasion?
- How involved is the caregiving? Can she get out of the house for awhile to get groceries and do errands? Or does the person you are caring for need to be watched all the time due to confusion? or is he helpless and not ambulatory or handicapped in terms of balance/blindness/or some other way that makes it dangerous to leave him alone?
- Is the loved one in fragile health such as a diabetic whose blood sugar in likely to bounce up and down and need assistance with food or medication to keep it under control? Or does he have some other fragile health condition such as breathing problems, choking, frequent falls, etc.
- Is he difficult to manage such as being very uncooperative, combative, etc. Possibly with medication needed when things go downhill quickly?
- Is he able to manage all or most of his ADL’s (activities of daily living)? ADL is a common term in rehab for those things he can do with his personal care: getting himself dressed, taking a shower, brushing his teeth, feeding himself, toileting himself, etc. If he needs assistive deices to do them but is able to do them with those devices, it counts that he can do them. Being able to do a person’s ADL’s is very important to their independence. The fact that they are slow doing them unimportant in the overall picture. They need to be able to do these very important activities as long as possible. As caregivers, it is important for us to have them do those things as long as possible.
For the most part, it helps us in ways we don’t realize until they become totally dependent on us. But more than that, it helps them. Allow them to do for themselves as long as it is possible. By having a chair in the shower, they may be able to keep showering themselves longer. It helps them see themselves in a different way when they are doing for themselves vs. having everything done for them. Yes, sometimes they will fight you on doing for themselves. But in the long run, they will be much angrier once they get to the point where they can’t do anything for themselves., A large part of rehab has to do with helping them learn to be as independent as possible…as well as building up their strength.
Outpatient vs. Homecare options
Of course, you may not have a choice here. Not everyone qualifies for home health care, or residential care either. I think the rule of thumb for home health care is that the patient must be homebound, This means they can’t get out except for doctor appointments and certain treatments. The downside is that if you, the caregiver need to be there when home health comes, you may have a problem. Depending on the person providing care, you may not know very far ahead when they are coming. Sometimes they will call the day before to give you a 2 hour window. At others, you won’t know much in advance. That can be a disadvantage.
During a period when we had home health, we also had a lot of other follow up doctor appointments. It was very difficult for me to schedule everything because I had very few days that were completely open. I wanted to try physical therapy through home health, but they were not good about notifying me when they were going to come. So I cancelled it and went with our local Physical Therapist we had worked with before. Ron was ambulatory. It was good for him to get out of the house. But the same may not work well for you. Your loved one may not be ambulatory. These decisions are very individualized. That’s why you need to ask lots of questions beforehand. You can always try one thing and if it doesn’t work out, try the other.
But another decision you may need to make in the hospital is whether to have your loved one go into a short term residential rehab. If they qualify, you may be wise to take advantage of it. Will it be fun for them? Not always. Residential rehab is difficult. If they qualify for residential rehab, they have either a severe major issue or multiple issues that need to be addressed. Residential rehab does that because it reinforces the rehab training during the 24 hour period. At least that is the goal. There is a lot of retraining that is going on. It’s not just one thing happening.
A major focus of the residential rehab program is getting the patient to their optimal ability to perform ADL’s
A major focus of the residential rehab program is getting the patient to their optimal ability to perform ADL’s. This includes whatever assistive devices are needed. Think in terms of special spoons and forks for eating, elastic shoelaces so shoes can be pulled on, and so much more. The end result is to make it easier for you, the caregiver. If you know this, it will help you in asking questions during the rehab time, They will also be asking about what you have in your home to assist your loved one and may make suggestions regarding supplies you need to install in your home such as ramps, bars in the bathroom, etc.
Another large part of ADL goals has to do with toileting. Often, when patients get out of the hospital, they struggle with some incontinence for a variety of reasons. Or they have issues with constipation when they may not have before. During rehab, those issues get addressed, but not always perfectly. Often, there are accidents and messes. Patients don’t like it nor do their families. Actually, the staff doesn’t enjoy it much either. But it is all part of the recovery.
In residential rehab programs, the patient wears street clothes and is on a more regular schedule, not a hospital schedule. Many have a dining room where the meals are served family style. (Covid may have changed that for now.) As they get into a more normal routine, they tend to improve quickly. However, I have also seen families upset because their loved one isn’t happy. He can’t sleep in. He doesn’t want to go to therapy, etc.
They forget the long term goal which is to help him get back to functionality again. All they can think of is that their dad was very sick and they want him to be happy again. They don’t support what is being done. They encourage their dad or mom because they don’t want them to be unhappy.
In the long run, it doesn’t work out well for them or their loved one. Of course, minor adjustments can be made along the way to the long term goal, but in rehab, it is hard work with some fun sprinkled in. In the end, there is a feeling of accomplishment as short term goals are reached. While it is true that not every goal we would like to reach is met, keep in mind what the basic goals are. Happiness, especially short term happiness isn’t one of them. But complaints that relate to long term goals should very definitely be made and worked on with staff. They are very important!
Discharge from short term rehab
Once a person is in residential rehab, they will also have a certain number of days to be there. (It’s the same as for the Hospital.) Hopefully, that number of days will correspond to the time your family member has reached his discharge goals. Usually he will be discharged to go home with or with some form of out-patient rehab such as speech therapy, physical therapy, etc.
Occasionally, they will recommend discharge to long term residential care (commonly known as a nursing home.) They will usually tell you why. You can always ask. Of course, you don’t have to follow their recommendation. But they will have reasons to make it and this will be the second easiest way to move your loved one into a nursing home if it has been in the back of your mind. The first easiest is when they are discharged from the hospital.
Final words on understanding your own limitations
Listen to their recommendations and why they are making them. I say that because it is not to their benefit to discharge people to long term care. In fact, it is not good for their stats. If too many of a short term rehab’s patients are discharged to long term care, it looks bad for them. So if they are recommending it, they must have a pretty good reason. At least give them a good listen. If you still plan to take your loved one home, that is fine. Just be prepared for the fact that you might need help or added support.
Caregiving is not easy even when it is part-timeish. But the more full-time it becomes, the more demanding it is, the more you need to be aware of what you have bitten off. You may need someone to come in a day or two a week so you can have a break. If that is not financially possible, you may need to get creative.
It is not sustainable for a person to keep going day after day full time without support or assistance from others. Find ways to get help and get breaks here and there. You will be a better caregiver. And most of all, help your loved one to be as independent as he possibly can be for as long as possible. Keep him up and moving. Get him up and dressed everyday. Have a routine for him. If he is used to fixing small snacks for himself, keep it up for as long as possible.
Do not allow him to be abusive in his behavior toward you as much as is possible. When he is verbally or physically abusive, leave the room if possible, even if only for a couple of minutes. And of course, don’t be verbally abusive in return. This may sound like a comment that should be understood, but in the caregiving groups I am in, it isn’t uncommon for this to be part of the interactions. You aren’t being kind to tolerate this behavior whether it is new or not.
You need to be wise regarding their safety, but you also need to be wise regarding your safety. Abusive behavior is horrible for you. You do NOT need to tolerate it. As a nurse, we don’t tolerate it. We leave the room. You shouldn’t either. It may enter into your decision whether to put your loved one into long term care. It is not for the revenge of it, but for the damage that kind of thing does to your spirit and mind. It is no joke!
Usually, long term care can be provided by medicaid. It may take a bit to find the right nursing home, but it is possible. Don’t feel that unless you have given the person 15 chances, you must tolerate their behavior. That isn’t the case. God may call you to minister to them in this way, but don’t assume that a feeling of guilt is the same as God calling you to do something. It isn’t. God may be calling you to minister to a loved one by giving them care in your home, but He may be calling you to minister to them in a nursing home because their abusive behavior is more than your family is able to bear at this point in time. Ask Him to make it clear. He will. Some people, He guides to care for loved ones in their home, for others, not because the circumstances are very different.
And though the Lord give you the bread of adversity and the water of affliction,
yet your Teacher will not hide himself anymore, but your eyes shall see your Teacher.
And your ears shall hear a word behind you, saying,
“This is the way, walk in it,”
when you turn to the right or when you turn to the left.
Isaiah 30:20-21 ESV