I am Tyra, mom of disabled child and retired nurse. I would like to share my experience with other parents. Caregiving for disabled people brings numerous and unique challenges for different types of disabilities. Caregivers and family members are there to provide understanding and support in the first place but to make sure a disabled person has everything they need to numb the pain or feel better.
Even though being a caregiver is endlessly humane, sometimes things get hard to bear. These are 7 pain points they face:
Communication can be an issue for millions of disabled people. Some don’t have the ability to communicate or this ability is limited, while others don’t have the motivation to speak. Thus, their caregivers should be truly patient with them and to accept they sometimes don’t want to cooperate.
However, if this situation lasts for a while, a caregiver may find it harder and harder. Wanting to help their beloved ones and facing rejection or having difficulties with understanding the other side may feel devastating.
Setting the limits
Some types of disabilities, such as certain mental disorders, autism, etc, make it hard for a disabled person to fully understand what their caregivers can take. Caregiving carries pressure and we all have our limits. Even though a disabled person wouldn’t want to hurt them, they may do that unintentionally.
It is hard to be firm with decisions when you know a person you are caring about is vulnerable, without hurting yourself in any way on the other side. If things get too hard to handle, it would be best to share the responsibility with another person.
Having social life
Being a caregiver usually means devoting most, if not all of your time, to a person in need. One shouldn’t forget to take care of themselves and their needs, social life, and mental health. Sometimes, a caregiver may start feeling anxious, overwhelmed, and depressed. If this happens, one should consult a doctor and take a small break.
The lack of requisite skills
If a family member is the main caregiver to a person in need, they would be expected to do this just as professional caregivers do. Yet, how do you make yourself trained and skilled when something happens all of a sudden?
You are qualified for your job, and then, you have to quit it and help a disabled person in wheelchair live their best life possible in that condition. It is so hard to know that your beloved one’s well being largely depends on how you do. The lack of training and mental preparation makes things really hard.
Expenses are high
What most people don’t know is that caring for a disabled person costs a lot of money. Either you will hire a professional caregiver or you will do this yourself. None of these two options is budget-friendly. Knowing how hard life is for your beloved one makes you want to give them the best care possible. You want to buy them all the medicines and devices, but these all cost a whole fortune. This can get even more challenging if you had to leave your job, caregiving for a person in need is everything you do, and there is no other family member involved.
It can get physically demanding
This is not the case always, but some disabled people weight 200 to 300 pounds. Helping them get up from wheelchair, use a toiler, or take a shower is physically demanding for a caregiver. Over time, their back starts hurting and caregivers who take care of obese people happen to face exhaustion more.
The health care system will make you lose your nerves thousands of times
One of the common situations caregivers face is being unable to get a proper response or help from medical workers when they need it. The health care system seems not to advocate for the condition of disabled people the way it should be, which makes many caregivers disappointed, even angry about it.
Even though a caregiver would be aware of the complexities of one’s condition, the system would respond to this differently. On top of their other numerous responsibilities, a caregiver has to fight for the rights, safety, and dignity of a disabled person they are caring for.
No caregiver would complain about what they do, even though this is indeed one of the most heartbreaking “jobs”. They always say caring for their beloved one makes them happy and satisfied, and society usually accepts it with no second thoughts.
What people don’t see is the struggle caregivers bear on their back. These were 7 paint points of caregiving for disabled people, but we should be aware of the fact each person is fighting their own battle, and different situations and challenges besides these seven may pop up daily. At the end I would like to share my good experience with blog loaids.com, because they helped me a lot with understanding disability.