Should my LO go to a care facility or live at home? This is one of the hardest decisions to make and it is also a personal decision as no one else can make this decision for you. Here is a list of things to think about as you worry, fret, and beat yourself up while deciding:
Assess your spouse’s needs / what was the stroke’s impact
Severity of the stroke: How severe was the stroke and what were its effects? What are the survivors’ physical impairments? Were they left with cognitive issues such as problems with memory or speech? Are there behavioral changes like problems controlling impulse, depression, anger etc?
Level of assistance needed: How much help will your spouse need and can you provide that help or afford to hire people to help? Can they cook, self-feed, shower, toilet, dress, entertain themselves? Are they mobile? Can they communicate effectively?
Assess your caregiver capacity
Physical and emotional demands: Caring for a stroke survivor can be physically and emotionally demanding. Spousal caregivers often experience loneliness, sadness and guilt for feeling ways they think they should not feel (hint: it’s ok to feel all your feels). Physically it can be challenging as well depending on the level of care. Personally I find it very difficult to move my husbands paralyzed arm and leg because he is so much bigger than me. I have a device to help if he falls but before that purchase I would have no way of helping him up should he have fallen (which he has).
Time commitment: Providing care can be a full-time commitment, and you may need to learn new skills and, as I have had to do, adapt your home environment to be safe and accommodate your loved ones needs..
Support system: Assess whether you have family, friends, or community resources that can help share the caregiving responsibilities. The less outside support you have, the more difficult the task of becoming the caregiver will be.
Self-care: Remember that prioritizing your own health and well-being is crucial to being an effective caregiver. You will probably find it almost impossible for self-care depending on how much of yourself you need to give to be the caregiver. The more organized you can be, and the more time you can spend on taking care of yourself, the better you will be. You need to stay healthy to be a good caregiver, it’s as simple as that.
Food for thought:
The benefits of caring for your loved one at home: the home is a familiar, it will be more nurturing and provide more physical and emotional comfort and can lead to a sense of normalcy where they can develop routines and get more personal attention. Their are drawbacks, though. Having your loved one at home is most likely going to be overwhelming and lead to caregiver stress and burnout. It is often expensive to modify a home to suit a stroke survivor.
Sometimes a loved one requires too much care and needs to be placed somewhere where they can get 24 hour support, medical care and structured rehabilitation while having complex medical needs met. In this situation they can become stressed and depressed, requiring more visits from you and constant reassurance that at the moment, this is the best thing for their needs. Let them know that with time and patience the goal is for them to return home.
Keep in mind that people recovering from a stroke are constantly changing (albeit in some ways slowly). What is not working one day may start working. There is nothing static in recovering from a stroke. What used to work may no longer be effective. You will need to constantly adapt to find the best way forward for you and your stroke survivor.
