Caring for Two

Hi @onlychild, Have you considered that maybe it is time for them to go in assisted living? That is an awful lot for you to handle on your own. You can still take them to appointments and such, but have time for you. With doing so much I'm concerned for your health and well-being. It's just something to consider.
JoDee

Hello @onlychild Nice to e-meet you here! I am Scott and while I did not have two patients, I was the primary caregiver for my wife during her 14+ year war with brain cancer. I know whereof you speak! The demands and the pressures of caregiving are second to none!

It is good to hear you still have your job! I was fired from mine by a new boss who didn't want a staff member 'who wasn't 100% focused on the job all the time'. Like anyone is! 🙂

I also worked for the Alzheimer's Association for some years for their research work and can say that actually, as far as the medical professionals and researchers know, very few types of dementia are genetically passed on, so I wouldn't waste any precious energy worrying about something this is unlikely as well as beyond anyone's control. Easy to say, but hard to do, I know!

Chronic disease and the resultant caregiving takes a toll on every family. I lost years of earnings opportunities and now find employers balking at my 'employment gap'. Plus it takes its toll on other family members too. Such is the nature of the often overwhelming demands of caregiving.

You are to be applauded for your hard work and commitment to your parents!

I send you strength, courage, and peace!

Hi, the life style you described sounds very challenging. I hope you can find some better balance somehow. Maybe it’s time to consider new options or consider how long you can sustain this current one. I quit my job to care for husband and after 4 years I really regret doing that. In hindsight, that was a big mistake for me. Now I’m having such difficulty getting back to work to bring in much needed income. Talk to new people, assisted age care, get information to help make better decisions for your future and their future. I have been told repeatedly to put my self care first, for without it , I will be no good to others. Why do us Carers think we are superhuman? I’ve pushed myself way past what is healthy, I can’t do it anymore. Now I hold onto that word Sustainability. Life is short in a healthy world, I lost touch and got busy doing and felt like it wasn’t enough, so I did more. That’s was the error on my part. I had to get honest and ask myself how long can I keep going like this. I needed to make some big changes in small ways, many small ways. I thought if I didn’t care this way, the world would fall apart. But it didn’t. I hope you find a better way to start making some small changes or big changes that are sustainable for your health and well being. Carers are people too.:)

JoDee, thank you for your concern. I am not sure that my parents would qualify for assisted living as they need quite a bit of hands on care - not to mention the resistance my mother has to leaving our home. You are right that I do need to consider the options.

I am sorry to hear about the challenges that you have experienced as well. I will accept all the strength, courage and peace that you can send my way!

Mina, I think that I need to read this post every day for a while! You are right that I feel that it is never enough and I do more. It is hard to actually take care of myself. My mother, in particular, comes right out and says that I shouldn't have any leisure activities when she is unable to do so herself. That is a tough one to deal with. She cries sometimes when I leave her with a caregiver just to go to work and gets angry when I leave her with a caregiver for a pleasurable activity. My dad with Alzheimer's is actually the easier one to deal with although it is heartbreaking to see him as he is.

I find at times, my husband would respond like a child, demanding and so very self absorbed. I understand he couldn’t help it, it was part of his illness. But that did not give me permission to not take care of myself or my needs, I had to be responsible for my own sanity and well being. It was like dealing with a child. In a kind way, I had to take care of myself. I had to accept that my husband was changing into a different person, one who didn’t think of me. Illness can wrap some people up. Now that we have moved back into the city, he has more contact with other people, more activity’s through associations that provide support. I learned to accept his childlike behaviour, at times, and still act as the adult, responsible for my life, and my well being. Every day I have to think, how is my caring today going to affect me? Did I set aside time to do something that lifts me, aside from sleep! This year, I finally got to my own medical appointments and I’m making time to see friends. I’m more tired but it’s worth it. Taking care of myself was and is the hardest part for me. I had to be trained by regularly speaking with a Carers support group and counsler and I’ve gotten much better than I use to be. I can now see the forest from the trees. Getting regular support made a huge difference as I learned to Let Go in a healthy and appropriate way. Wishing you a day of peace and self care.

Just wanted to thank you for your suggestions and kind thoughts

Oh boy can words sting !!!!

you know that old saying that goes sticks and stones will break my bones but names will never hurt me

this is what I say b.s, not true Sticks and Stones can hurt you and they will bruise you and they will Mark you but you will heal!

But words will never leave you!
they live inside of you and they live with you and people can never take them back!
I so I totally understand the pain and hurt
that's why I tell people be very careful what you say because you can't take it back.

Take it from somebody who knows keep going out to work keep going to the special activities or the leisure activities because trust me if you don't when you get to a few years from now you're going to regret it you can do about it you can't change and you won't be able to go back those times and hours and minutes and events so please do that if that means that you hire caregivers then so be it!
Curly

Thanks Curly. It is helpful to just hear someone else say that it is important to have leisure activities. Life is short and I feel it slipping it away.