Before you take your loved one home from the hospital or care facility, there are things you can do in advance to help prepare them for their transition home, and prepare YOU for one of the most important roles in your life. Absolutely, if at all possible, spend a full few days and nights following your loved one through their routines so you can see what they are actually capable of, what their routines are, and what may be expected of you as their caregiver at home. Know that you will be burning your candle at both ends for an undetermined amount of time.
It will be important to create a notebook, binder, or file with important information that will be available to you without a lot of stress and searching. It may even be helpful to purchase a Planner that includes daily and monthly pages to include everything on. Make a typed or written list of the following:
- Medications needed and schedule of medications (what gets taken when)
- Names and numbers of providers to call with questions, appointment scheduling, or emergencies
- If your loved one has a traumatic brain injury, the name and number of the Brain Injury Association for your area, support groups available, their hours and location.
- Write down ALL questions as you think of them. You may have every intention of remembering them. However, I promise you – you will remember these questions at the most inopportune times if you don’t have them written down.
- Purchase one or more “white boards” with dry erase markers to hang up at home. These are very handy for keeping track of all kinds of things.
- Have a documented list of all medical equipment, supplies, toiletries, and assistive devices you may need at home for your loved one, BEFORE you bring your loved one home. Keep in mind there will ALWAYS be something you didn’t think of at the time, learn about after the fact, or discover in your advocacy for your loved one. That’s okay, don’t be hard on yourself.
- Have a support system in place for yourself. Counselor, social worker, therapist, other family members willing to help, home health agency, medical case manager, etc. Keeping yourself healthy first, will allow you to do your very best for your loved one.
So your loved one is ready to come home from the hospital. You may feel excited, nervous, impatient, and mostly prepared. Nothing can prepare you for all the dynamics and changes you are about to take on, other than first hand experience. Structure is imperative. Especially if your loved one has a traumatic brain injury. The first two weeks home will most likely be the toughest to adjust to. Don’t get caught up in the idea that they need a “break” and no routines, schedules, or therapies. Recovery is enhanced with structure and consistency.
You may have realized by the end of the first week that you are feeling exhausted and scattered. You may feel like maybe you weren’t ready to take this on at all. Who is this person you brought home? They are so different. They may be painful, irritable, demanding, and impatient. It may be hard not to take this personally. Your time is no longer your own and you are now responsible for every aspect of this person’s safety, health, and recovery process. You may become so focused on what you should be doing next to help with all the things that need to be done that you cannot sleep or slow down your thoughts. You may be feeling like you cannot do anything right….or perhaps you realize you are doing everything right, yet your loved one is not responding in the way you were anticipating they would. You may find yourself tiptoeing around them, being cautious of everything as each hurdle presents itself.
By the end of the second week, you are fully aware of the time commitment that is involved now. You may be losing track of time as your days now seem to run together. You may now be thinking of a thousand things you should have asked, learned about, or prepared for BEFORE your loved one came home. You may be feeling a bit overwhelmed and may even realize that you are not able to do EVERYTHING on your own. It’s okay, you are not alone in this realization. You also may actually be getting a better grasp of the schedule that is going to work the best for you to survive being a caregiver, while helping your loved one progress through their recovery at this point. You will most likely be beyond exhausted and unsure how you are going to be available to your loved one and still meet the demands, responsibilities, and obligations in your own life – that exist outside of your new caregiver role.
Your loved one has gotten used to certain schedules, expectations, routines, push to be independent and compelled to focus on their recovery in the hospital or rehab facility and will come home expecting those same things to be in place at home. They may feel distant, resistant, challenging, and develop unrealistic expectations about what you are able to accomplish for them both directly and indirectly.
Sometimes your loved one, if they have a traumatic brain injury, may have a skewed view of reality. They may have mood changes you are not used to dealing with, have difficulty adjusting to their “new normal”, and may have difficulty accepting the changes they are now facing every moment of every day. You may be having difficulty adjusting to the expansive and growing list of needs and accommodations they now require.
You may have become overprotective at this point. You may be able to anticipate your loved one’s needs before they even ask for it. You may micromanage every aspect of their day. You may also be doing things for them, that they are able to do for themselves with a little supervision or prodding. This is not not good for your loved one in the long term to have you doing EVERYTHING for them. It is imperative that you encourage independence as much as possible. Help them with what they need help with, of course. However, encourage them to do as much on their own as possible. This will take them out of their newfound “comfort zone” and will not always be successful in the first attempt. Don’t get angry if they attempt something and do not succeed, or if they are unable to complete something they have attempted. This effort may takes weeks, months, and in some cases years of consistent attempts for this to happen succesfully. For some caregivers, there is no mastering this aspect of the caregiving process. You may have a loved one who is incapable of independence. In that situation, set small goals for yourself, for them, and partner with providers to celebrate even the littlest victories or accomplishments. Sometimes just getting up for the day, getting bathed and dressed for the day is the best that can be accomplished that day.
It is imperative to eventually include your loved one in as many life activities as is possible. They may not be ready for this in the first few weeks home. Consider trying to take them on very brief, small outings with you a little at a time. Even if just to a convenience store and then back home, the library and back home. Perhaps even just a ride around the block after getting dressed for the day can be a huge accomplishment. You can build to other places, longer times, and more challenging things as time progresses and they are ready. Some things to consider when leaving the house with your loved one:
- Have a “travel bag” ready to go with you on each trip that includes their medications, a change of clothing (maybe two changes of clothing), items that help them cope, and notebook (with pen or pencils and higlighters in different colors)
- Have something for them to drink with you (bottled water, thermos, juice box, etc)
- Carry ear plugs, headphones, sunglasses, lap blanket, and any other things that may help your loved one when they are away from home based on their personal needs.
- Allow tons of extra time for getting ready to leave the house with your loved one. Allow extra time to make it to appointments on time. I would suggest at least an hour wiggle room. Folks with traumatic brain injuries have a real challenge with being rushed, given too many tasks at once, or last minute changes. Even though they may make many last minute changes in their level of participation, effort, and coping ability.
- Be prepared to turn around and go home. You loved one may have a meltdown, panic attack, behavioral outburst you are unable to manage safely away from home, or they may feel “flooded”or voice their desire to be home NOW. Sometimes, when they have a medical appointment, going home is not a possibility until after the appointment. Often times, going to a medical appointment will be the only outing they can do that day.
The largest part of recovery will take place within the first two years. However, this is not where recovery ends. Research continues to show that healing, strength, behavior, body changes, and rerouting of the brain continues – even years later.
It is common to feel sad, depressed, or disappointed if your loved one has not reached the recovery level you anticipated at the one or two year mark in their recovery. Your loved one also may be having some struggles around this time as well. They may have expected to be further along in their own recovery, or reliving the time of year their accident happened and comparing it to their life before their injuries. Families often misjudge the amount of time it will take for their loved one to recover or plateau ; especially if their obvious physical injuries/fractures have healed by this time and you are unable to “see” the traumatic brain injury.
[Potential Providers may include the following: physicians, physiatrist, nurses, physical therapists, occupational therapists, speech therapists, recreational therapists, respiratory therapists, counselors, psychologists, neuropsychologist, social worker, specialists, nurse’s aids, home health aids, medical case manager, family caregivers, volunteers, and/or clergy.]
~Compiled By: Caren Robinson