8 Things Caregivers Need

I remember not long ago a man confided in me that his wife had left him. He had Parkinson’s disease. Thirty years of marriage. Now, I’m not saying she left because he had PD, but whatever the reason(s), she left. You could say, just when he needed her most.

It’s not uncommon at all for spouses to decide to leave when the other one gets sick (so much for “in sickness and in health”). I think it could be a matter of ‘having it up to here‘ and then finding out the one you’ve ‘put up with‘ for ever so long now has a condition that will not only made their life more difficult, but the caregiver’s life as well.

Parkinson’s does that to a married couple. To a father-son relationship. To the bonds between mother and daughter. To friends. It comes in and subtlety takes away the ties which once bound these relationships together by a tight knot. What may have been a relationship tied together like loose shoe laces, is now dangling by a thread, if not completely torn apart already.

The PD patient changes. They are physically familiar, but mentally, emotionally – they’re not the same and the caregiver is left struggling with how to deal with their new lot in life – taking care of someone else while taking care of themselves.

If you are a caregiver to anyone, first of all, thank you for your commitment and sacrifice. You might get hit, have to change yet another big girl or boy diaper, clean up another spill, wash another naked body, but we – your charges – appreciate you more than we might be able to say or show..

And now, here are eight little things you can do as a caregiver to, hopefully, make your role a little bit easier….

  • Breathe deeply and when you get one free minute (or two), please do one thing  (or two) that puts a smile on your face. Go out to the garden and breathe in the fragrance of a rose. Put on encouraging music. Read a short devotional. Fix a cup of tea.  And then scream.
  • Don’t focus on the what-ifs. They’ll defeat you most every time. Do focus on now. Things may seem like a tremendous struggle at the moment, but you have to admit that things really could be worse. Today is just one of the harder days, but when the clock strikes twelve, it’s a new day and something wonderful could be ahead that may just make it easier (the patent may turn into a pumpkin!). Don’t lose hope.
  • If you don’t have one already (and most likely what you’re going through is causing you to find one), get a sense of humor. Without one, you’ll often despair. Find something funny in every day. If there really isn’t anything you can find, read or watch something funny. You need to laugh.

  • Get yourself into a support group locally or online. You may not think you need it yet (or ever), but you do. Especially as the road becomes bumpier. And it will get bumpier. Get some support in place now, as it will make things easier to deal with later.
  • You need your friends. Don’t alienate them by thinking “you’ve got this“. Accept their invitation of help. Accept their giving you an hour off, washing the dishes, picking up some groceries, dropping the kids off at practice, cooking your family a meal. Give yourself some slack and let your friends feel needed, because if they are offering to help before you have even asked, they may be able to see your need better than you do.
  • Try to think ahead. Your loved one’s mental faculties may not be so great anymore. A daily schedule may be useful with a reminder for doctor appointments, visitors, special occasions, etc. They have white boards that have permanent monthly calendars that you can easily change for each different month and activities. This reduces stress in many ways  – for everyone.

  • Don’t beat yourself up. There will be good days and bad days. That’s what life is made of, only now your good days and bad days have had a debilitating disease thrown into the mix. You may have more ‘bad’ days now due to your new, unwanted role. And because this is admittedly, an unwanted role, you hate it. You loathe it. You feel like your life has been stolen along with the one you’re caring for. You have thoughts of packing it in. Giving  up. Throwing in the towel. Leaving the patient to fend for him/herself and walking away. You’re tired, weary, spent, worn out. You want it to end and you feel guilty for thinking and feeling the way you do.  And it’s okay. It’s normal. Your caring for the one you’re grieving over while you’re grieving over what you’ve both lost already and could very well lose still. It’s okay to be frustrated, to go outside for a reprieve and scream. It’s okay to let the tears flow. Just remember: the one you love is in this fight with you, not against you. They are just not able to fight as they once did. Try to remember them as who they were 10, 15, 20 years ago when you laughed together and went for walks together and… you know, those things.
  • Try to remember… if your loved one could get out and mow the lawn again, he’d do it in a heartbeat – if he could. If the wife you care for could brush her own teeth and tie her own shoes, you’d both be ecstatic that you weren’t needed for that anymore. Whatever you’re losing, they are losing as well and have been internally dreading these days coming with a vengeance. If they could, they’d take this bitter cup from you faster than you think.  And remember, the cup will be dry one day, so enjoy it now while there is still some juice left – even if at times it may be sour.

We don’t mean to be a pain. Trust me. I know.

Helping Them Help Us

As I sit here and wonder what it will be like in ten years, fighting the fight against Parkinson's disease since the age of 32, I wonder: What will it be like – for me? For those who may have to care for me?

I don't want to go there – to think about that. But you do think about that. You can't help not think about that when you live with a chronic disease.

As I sit outside on my porch now, I watch the birds and butterflies, the dragonflies, bees, and more. I call them 'my' birds. I suppose I should clarify, they are not my birds per se, merely a gift to enjoy. However, since I feed them, I claim a sense of ownership. They flit and they flutter, and they float and they fly. Chickadees and hummingbirds, finches, Monarchs, and more. They build their nests in the trees, on my porch, in the birdhouses along the fence, and they eat the seed and the suet set out for them. As I sit here, I think about a time when I may not have the energy – the ability – to feed them. And so, not to be morbid, not to be cynical, but being realistic, I tell my husband that if and when there comes the time that I cannot feed them or otherwise, or even ask for him to do it for me, please will you place me on the porch so that I may still enjoy the birds and the butterflies?

Do I like to have to think about such things? I've yet to meet anyone who would answer yes to that question. But when you live with a chronic illness, or care for someone with a chronic illness, you inevitably will find yourself thinking about what ifs.

Sometimes we think we know another person well, but sometimes we don't know everything about them – things that might help them care for us better or things that may enable them to make their job easier, if only they knew. Does my husband know how much I enjoy the birds? Of course he does, but in the throws of caring for another person, the caregiver may not be thinking about wheeling the caregivee out to the porch to listen to birds chirping and watch butterflies floating on the tiny tips of their wings. A caregiver can be too consumed with thinking about how many pills they need to doll out for this hour, which pills, and how to get their charge to take those pills, and just how weary they have become from (amongst other things) picking up the pills because their caregivee's hands started shaking and they couldn't hold onto those little boogers.

And so, as I have sat in this chair many times over, I have thought – why not make it easier on my 'future' caregiver now? Why not begin to create a bucket list of likes? A list of what I enjoy – or think I might enjoy. A list of a few of my favorite things that might not naturally come to someone else's mind who may have to care for me. And perhaps this could also be a list of ideas to shake up the routine a bit for my caregiver(s).

Here is a list of things I came up with that you could start with to provide for your caregiver when the time comes that it may be needed or useful:

  • Audio books – as a PD patient (or other person who may need help/care) who will most likely need one on one help in the future , go so far as to state your favorite books or authors. Begin making a list of the books you've loved reading, along with your favorite authors. Don't worry if you've already read them. I tend to think by the time I'm in that place, I will have forgotten what I've read and they will all seem like new stories. Besides, if it was a really good book, it's probable you'll have read it more than once and welcome reading it again or having it read to you.
  • Bird watching is something a person, well or not, can do in a chair, left unattended. Purchasing a CD of bird songs for the patient to listen to inside on rainy, birdless days would be soothing for the patient. Renting or buying the old Hitchcock movie “The Birds” may not be a great idea for someone at this stage. 🙂
  • Make a list of your favorite movies/actors. Make a list of movies you really don't care for.
  • If you are not able to read anymore, would you want someone to come in and read to you? Is there a grandchild you'd enjoy haivng sit beside you and read aloud to you? A young person at church or in the neighborhood? It would be good experience for the younger person and a great help/break for the caregiver.
  • People with chronic illnesses often experience a good amount of pain that could be alleviated to some degree through touch. By this I mean, a foot rub or applying lotion/oil to the legs and spending some time gently rubbing it in. This will help loosen the stiffness they are possibly dealing with and give some relief while at the same time making them feel they are deeply cared for. Nothing can replace that personal, gentle, human touch when it comes to caring for someone and making them not only feel loved, but that they still have value to someone.
  • Who hasn't enjoyed a quality haircut? And one reason is – you get a great scalp massage. However, many times, a caregiver can be a person who has lost strength in their hands due to arthritis and more and this isn't possible. As a little girl (and before there were carseats for kids or mandatory seat belts for anyone), when our family went on long car rides, I would often stand on the floor in back of my dad as he drove and 'do his hair'. I would comb it, put barrettes and bobby pins in it, redo it and do it some more. He loved it and will still, at the age of 78, talk about those car rides and how he loved when I'd mess with his hair. Not because he liked pink barrettes and ponytail holders, but because it felt good.

Talk to a person who has cared for someone with PD or a person with PD who is further along in the disease than you are and ask what suggestions they might have to make the job of caregiving easier. It's better to let your caregiver-to-be know what your likes are now so you don't get stuck watching reruns of Gilligan's Island when you never really cared for the millionaire and his wife in the first place. Now, how boring would that be?

[p.s. – I love Gilligan.]

Got a suggestion? I'd love to hear it!

Book Review: A Caregiver? Me?

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A Caregiver? Me? by Lynda Bush
Format: Kindle, paperback, hardcover
Publisher: WestBow Press A Division of Thomas Nelson
Publication date: 11/26/2012
Pages: 108
Available: Amazon

*I was given a complimentary copy of this book in lieu of an honest review.

I chose to review this particular book for the reason that I felt someone out there who is caring for a loved one with PD (or any other illness) might hopefully benefit from it and after reading it, I’m sure they most definitely will
.

A very quick read, Lynda Bush’s book, “A Caregiver? Me?” (West Bow Press, 2012), is a great companion and resource for anyone on the journey of being a caregiver to someone they love.

Lynda speaks of her own personal journey as caregiver to a spouse, but anyone in that role would greatly benefit from her insightful experience and practical advice.

Stressing the importance of humor throughout her journey of one of the most difficult roles in life, Lynda does not make light of the harsh reality of where the role of a caregiver leads – that of letting go of the one you love – the one you have cared for, and for some – for so very long.

At first it seemed Lynda was going to write this ebook as an instruction manual but that quickly faded into a personal account of what transpired and suggestions on how to make the reader’s experience ‘easier’.

Broken into eleven easy and quick read chapters, Lynda takes her assuming caregiver reader personally from how they came to be in this role as caregiver, taking care of yourself as a caregiver, surviving your role, legal matters that need immediate attention, to preparing for the funeral and death itself, talking about death, and the final weeks. She also spends an invaluable chapter on tips for the caregiver and another chapter on tips for friends and families.

A mere 108 pages, this book is loaded with great advice and comfort and hope that if you find yourself in a caregiving role, there’s someone who has truly been there and has written about it to help you navigate that hard road.