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Many caregivers are spouses or adult children and they are taking on all of the responsibilities for their pALS alone. That can have a devastating effect both on their mental and physical health. There is help out there, but you need to be willing to ask and accept the help. That can be very challenging, especially when your needs and the needs of your pALS are constantly changing. Do you have a difficult time asking for help? Do you ask for assistance when you need a break? How much help, and in what form is the best for you?
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My partner has been diagnosed for about 2 1/2 years. Early on I felt I could do everything. As the disease progressed and he lost the use of his arms and legs, it became apparent that I was burning out and feared I would start making mistakes with his care. Fortunately for us he is a military veteran and the services provided to both of us are awesome. We have family therapy once a month, private as needed, his ALS nurse and the entire ALS team in the hospital continue to be wonderful. I do not feel I am here alone. I need something, reach out to the VA and they are there. We have also hired two Aides. One has become his personal friend and I think a family member. The other one is learning and we hope she decides to stay. Finally, the family has been insisting I take respite. I have trouble detaching but have finally rented a house down the NJ shore and in October my dog and I are going away for a week. Jon has been very supportive I hope to mentally heal a bit a sleep a few extra hours a day.
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