My mother was diagnosed about 3 years ago and had reached full paralysis about 8 months into the disease. My father had religiously been taking care of my mother's EVERY need as well as going to work full-time (for the past 3 years). In Canada, we only get 15hrs a week of Personal Support Worker help and that definitely is not enough. We always thought of a live-in caregiver but it seemed my mother was not comfortable as she felt she wanted to spend the last few moments of her life with her husband.
Unfortunately, the help was not enough. My father eventually drained himself and died of a sudden heart attack at the young age of 59 last month. He did not smoke, zero alcohol, and no health problems besides stress from caregiving. We all knew he was drained and just needed rest, but the opportunity was just never there for him since he stuck to only two duties - caring for her, and working 40hrs at his job.
Even I must admit, I didn't do half the duty my father was doing in caring for her. However, we realized a little too late how crucial it was to get professional help. My father was just too sincere and loyal to his wife and respected her every wish, even if he knew it would put a lot of stress on him. Also, my father was very quiet who never asked for any help.
If you are older and are a caregiver, please do not over exert yourself and please carry a balanced lifestyle with the caregiving and your other daily activities.
I would suggest the following for caregivers:
1) Exercise and keep yourself healthy. Involve yourself in activities to reduce stress.
2) Don't forget about your own health
3) If there are others around you to help, ask for their help. BUT, keep in mind everyone has their own lives to live. HIRE A PSW/NURSE/CAREGIVER if you can. Hire 2 if possible (day shift, night shift).
4) If your spouse is not the ALS patient, do not forget them.
5) If you are not the primary caregiver, invest more time in helping the primary caregiver. Set daily schedules and split hours between families. Sleep in some nights with patients.
6) Get any equipment you can to help the patient because ultimately it will help you too.
7) Write instructions on how to care for the patient, because if you go, someone will need to takeover that sudden instance.
Since my father passed, my entire remaining family has been caring for my mom. We still do not understand how he did so much for 3 years. It's exhausting, physically draining, and definitely affects your daily life. We are lucky to be able to hire 2 nurses and this has been the biggest help for us. That way the time we do have with my mom are memories that we can actually cherish.
Thanks for reading and please excuse typos/grammatical errors.
Unfortunately, the help was not enough. My father eventually drained himself and died of a sudden heart attack at the young age of 59 last month. He did not smoke, zero alcohol, and no health problems besides stress from caregiving. We all knew he was drained and just needed rest, but the opportunity was just never there for him since he stuck to only two duties - caring for her, and working 40hrs at his job.
Even I must admit, I didn't do half the duty my father was doing in caring for her. However, we realized a little too late how crucial it was to get professional help. My father was just too sincere and loyal to his wife and respected her every wish, even if he knew it would put a lot of stress on him. Also, my father was very quiet who never asked for any help.
If you are older and are a caregiver, please do not over exert yourself and please carry a balanced lifestyle with the caregiving and your other daily activities.
I would suggest the following for caregivers:
1) Exercise and keep yourself healthy. Involve yourself in activities to reduce stress.
2) Don't forget about your own health
3) If there are others around you to help, ask for their help. BUT, keep in mind everyone has their own lives to live. HIRE A PSW/NURSE/CAREGIVER if you can. Hire 2 if possible (day shift, night shift).
4) If your spouse is not the ALS patient, do not forget them.
5) If you are not the primary caregiver, invest more time in helping the primary caregiver. Set daily schedules and split hours between families. Sleep in some nights with patients.
6) Get any equipment you can to help the patient because ultimately it will help you too.
7) Write instructions on how to care for the patient, because if you go, someone will need to takeover that sudden instance.
Since my father passed, my entire remaining family has been caring for my mom. We still do not understand how he did so much for 3 years. It's exhausting, physically draining, and definitely affects your daily life. We are lucky to be able to hire 2 nurses and this has been the biggest help for us. That way the time we do have with my mom are memories that we can actually cherish.
Thanks for reading and please excuse typos/grammatical errors.
