Caring for a loved one: why it’s so hard

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We spent a couple hours on Easter with my grandmother and grandfather (pictured with me), although I’m there every day of the week to help grandmom. Grandad sees me all the time, but doesn’t get to see Tim much, so we usually spend some time together with him and grandmom on Sundays. My grandfather loves my husband. I don’t know what it is, but he lights up when Tim walks in the room. I think it’s the fact that they have a similar sense of humor… and that Tim always tries to sneak him dessert or his favorite fried chicken from Royal Farms.

For those who don’t know, my grandfather has Parkinson’s disease. Often people assume this means that they just shake all the time, but that’s not necessarily true. As with a lot of diseases, every case is different. My grandfather, while plagued by the physical side of Parkinson’s, has also been majorly affected by the mental side of things. He’s confused all the time, has trouble thinking, talking, or making decisions of any kind. He is rarely able to say what he means and both grandmom and I have become accustomed to translating what he says into what he means. Sometimes he’ll ask for the phone, but that really means he just needs to use the restroom.

He is also extremely shaky and unstable and can’t be left alone for long because he tries to get up and do things and ends up falling (which has happened on numerous occasions). He has basically 24 hour care. For the past 8 months or so, I have been there every weekday from 10-2 helping my grandmother care for him and taking care of household chores so that she doesn’t have to try to be in two places at once. She has another nurse come in from 2-6 and then a night nurse comes in around 10 or 11 to help him get in bed (and stay with him through the night).

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Grandmom & grandad on Easter

So why am I telling you all this? In hopes that you’ll have a better idea of what I’m talking about when I explain what it’s like to care for him. I come home from her house so mentally and emotionally drained after spending the day with him, and sometimes its hard for me to explain why. It’s difficult to think of things to keep him engaged and uplifted. Half the time he doesn’t even want to talk, so you just have to sit there and watch him. You can’t get distracted by anything because the moment that you do, he’s trying to get up and won’t tell you what he needs or let you help him. I’m convinced that this is because I’m his granddaughter. He knows that at least, and I definitely see a difference in the way he interacts with me vs the other nurses. It’s frustrating because I’m put in a spot that demands that I take authority over and be responsible for someone that is a relative and so many years my senior. This is a difficult place to be in because I don’t feel like I can tell him what to do; yet at the same time I have to assert myself or he will keep trying to do things without my help and may end up hurting himself. The hardest part for me is finding a happy medium between independence and safety. It’s difficult to give him the independence that he needs without sacrificing safety, especially because he often refuses to let me help him anyway. This is one of the reasons I come home so drained (even though its only 2 in the afternoon). I think this is because a loved one or relative will never see you as a caregiver/helper – only as their relative.

This is not to draw attention or pity for me, because truly it comes down to him. It hurts to see him struggling the way that he does (physically, mentally, and emotionally). I wish there was something I could do and the one thing that I can do, he won’t let me. Those of you who have had to care for a loved one know the struggle it is to see your loved one suffering and be unable to change it. When you see this every day, it definitely wears on you and I see evidence of that in my grandmother as well (although she’ll never admit it). She’s such a strong woman and I look up to her in so many ways.

I finally decided to take some time off; not totally, just partially. So instead of every weekday, I will only be there Tuesday, Wednesday, and Thursday. While I know she still needs the help every day, I decided that with school, pregnancy, and everything else I have going on, I need the time home. As much as I love both of them and want to help, I also know that I need to take care of myself for my baby; being stressed out and overwhelmed all the time won’t help me, baby, or anyone else. I’ve already noticed how helpful it is just having two extra weekdays home. This gives me a 3 days on, 4 days off work schedule that is working well so far. I’m able to devote more time to my studies, house work, and healthy meals, and the extra days off help me to come to grandmom’s refreshed and remain patient with grandad when he is making it difficult to help him.

When it comes down to it, no matter how hard it gets, I’m thankful. Thankful for the fact that I get to spend all this time with them when most of my family hardly ever sees them. Thankful for each day that I get there and he is awake, alert, and able to converse at all. Thankful for both him and my grandmother, who has been a huge source of support for me throughout my life. Most of all, I’m thankful for an opportunity to help and support them.

It’s always worth it,

Madeline

11 Comments

  1. April 4, 2018 / 8:12 pm

    This must be so difficult for you, especially as your expecting. My mum had parkinsons and i have a really good friend whos husband has had it for 20 years. She is often so exhausted. Your being a really good grandaughter but dont forget to look after yourself .

    • April 4, 2018 / 8:15 pm

      It is definitely difficult! And I’m so sorry to hear that – it’s such an awful disease. I appreciate the encouragement! I do take care of myself – it’s easier to prioritize myself now that I’m pregnant and have someone else to watch out for.

  2. April 6, 2018 / 5:18 am

    Madeline, you are incredibly fortunate to have your grandparents around. And giving of your time to help and support them makes you a superstar! ⭐️

  3. April 17, 2018 / 5:51 am

    You are so blessed to have them in your life.
    I am sure your visits, help and companionship, is the highlight of their lives.
    Stay blessed.

    • April 17, 2018 / 12:23 pm

      I truly am! Thank you for the read and for your encouragement.❤️

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