Having a Parent Care for Me

By Anna Samson

2 min read

I was 21 years old when my AS started getting bad. It's been almost two years since my condition has worsened. I've found some treatments that keep my condition more stable, so it doesn't get any worse but it hasn't been getting any better either. This means that I need a lot of help doing things. I live with my mom and she helps me a lot.

Bathing

More often than not, my mom helps me shower. I've got a shower that helps prevent worsening pain and fatigue, but it can still be exhausting to wash my hair and body in one go. My mom usually helps me wash my hair. On days when she can't or she's at work, I wash my hair and body separately (sometimes even on separate days depending on my pain and energy levels). At first, it was really hard for me to ask my mom for help. It made me feel really vulnerable and ashamed to need her to help me. Especially since she works full-time at a physically intensive job and it would make me feel like I am taking time to rest away from her. However, she has been more than willing to help me and has never made me feel bad about it.

Cooking

Another way my mom helps me is by cooking. I don't have the energy to stand and cook. I've tried getting a little kitchen stool to help with this but it proved ineffective. I would have to keep getting up to get things from all over the kitchen. I've tried gathering all the materials beforehand and then cooking while sitting but the gathering often tires me out. Another aspect of cooking that makes it difficult for me is that it is time sensitive. I need regular breaks of varying length depending on my pain and energy levels and it is hard to coordinate that with recipe times. So my mom does the cooking.

She will also bring me breakfast in bed. This used to make me feel really guilty and ashamed because it is usually considered a luxury or a treat. Because of AS, my morning stiffness is really bad. I basically cannot move much for the first hour and a half after waking. So, I can't get to the kitchen and even if I could, I wouldn't be able to get something to eat. Before my condition worsened, I would grab myself something for breakfast. Or have breakfast with the family. But since my condition has worsened, my mom has been bringing me breakfast in bed everyday. I am so grateful for it because otherwise I would regularly miss breakfast.

Finances

My mom will also drive me to doctor's appointments and financially helps me as well. Sometimes it breaks my heart that she came to Canada and worked so hard, hoping that one day her kids would take care of her. But now, even as she gets older, she takes care of me. It's hard not to get wrapped up in thinking like that. But I know it's not my fault that I have chronic pain and my mom knows this too. I wish she didn't have to help me so much so she could take care of herself more but I truly appreciate everything she does for me.

Do you have a parent that helps care for you? What has your experience been like?

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Lisa Marie Basile Moderator & Contributor
She sounds lovely - don’t feel shame! I don’t really have parents that can help me (I’m also 37), but it’s lovely you do. I do have a partner who is very sweet to me when I need it but I’m lucky to have and be able to fight for a lot of independence even though some days are very rough. Wishing you all the best. 
1. Anna Samson Moderator & Contributor
 <inline-mention username="Lisa Marie Basile" user-id="2108259"/> Hi Lisa! Thanks for saying that! A lot of the time I do feel shame about it but it's nice to hear that it's not something to feel bad about. I'm so glad you've got a partner who supports you, but I hear you about fighting to stay independent.
Julie Vallortigara Moderator & Contributor
<inline-mention username="Anna Samson" user-id="4164139"/> Hi! I think you are doing your best and you have an amazing Mum!! I do relate to the cooking issue, being tiring and time consuming, and I try to manage that by having very easy and quick made meals 😉 And I am always happy to go back to France for holidays and stay at my Mum who takes care of me, cooks for me and land me her car! So yes, we are lucky to have parents who can look after us when we need. Take care, Julie.
1. Anna Samson Moderator & Contributor
 <inline-mention username="Julie Vallortigara" user-id="2107984"/> Thanks so much! Yes having helpful and caring parents is such a blessing. I'm glad you have your mom to care for you as well.
James Hollens Moderator & Contributor
Hi <inline-mention username="Anna Samson" user-id="4164139"/> , Wow what a true hero your mum really is! I moved back in with my mum for a while when I was first diagnosed and am very fortunate that she was willing to help me with a lot of these things too. I can definitely relate to these feelings of guilt too, but you are so right that we must try not to get caught up over things that are not our fault and can not be controlled. I'm sure our mums know that if the shoe was on the other foot we would do the same for them and I suppose all we can do is show our appreciation and care for them in other ways that our body allow us to! Wishing you all the best, James (Community Member)
1. Anna Samson Moderator & Contributor
 <inline-mention username="James Hollens" user-id="2107776"/> Hi James! I'm glad your mom has been there for you too! Having support is so important. I agree, all we can really do is show them how much we appreciate them.