Life with Pam

My wife, Pam, was diagnosed with MS in her mid-30s, after bouts of double-vision and “clumsiness.” For the first year or two, I sort of pretended like it wasn’t that big of a deal. However, she fairly quickly became dependent on a wheelchair and eventually lost all function except some use of her right hand. Now she needs round-the-clock care. Our three boys are grown up and moved out—one recently diagnosed with MS—and Pam and I both really want her to keep living at home. So far she is able to do so with in-home care and me: her husband and family caregiver.

For the past 15 years, our days have gone like this: I get up at 6:00 a.m. and help Pam out of bed with the lift. I take care of her restroom needs, then wash her and get her into her wheelchair. Then the certified nurse assistant (CNA) arrives so I can leave for work. Pam’s CNA feeds her breakfast, lunch and dinner, and manages her other needs including positioning to avoid pressure sores. Pam can be in her wheelchair for four hours at a time, and then she must be on the alternating-air mattress on her hospital bed (in our living room). After I get home from work we watch TV and talk; I scratch her nose for her or smooth her hair until bedtime. It may sound repetitive or leaden, and sometimes it is tough. But people get used to things—we’ve been doing this for a long time. Pam and I wouldn’t have it any other way.

My parents are now in their 90s and recently moved into a full-time care facility. They live a six-hour drive away from Pam and me. We’ve visited them occasionally over the years, but when I travel with Pam we have the Hoyer lift, shower chair, alternating air mattress, and much, much more. Working with the lift in hotel rooms has become impossible since hotel beds no longer have frames to slide the lift under. We have to get a suite in order to have enough space… it’s all very expensive. Plus, when we get there, I spend most of my time caring for Pam and not visiting with my parents.

I decided that if I was going to visit my parents again, I’d need to visit on my own. I researched Pam staying temporarily in a nursing home—I was told that nursing homes don’t like temporary placements. We can’t afford a CNA around the clock, and Medicaid will only pay for 16 hours per every 24. It felt impossible... until about a year ago, when through my volunteer work with the Society, I heard about a program that could fill the gaps in Pam’s Medicaid-paid care for up to three full consecutive days. Pam could have the support she needs and I could visit my parents! We applied and were approved for the vouchers, and I traveled to see my parents this summer. It was wonderful to see them, and my siblings, too, and wouldn’t have been possible without the Virginia Lifespan Respite Voucher Program.

After nearly 40 years of marriage, I really consider us to be “lucky”—if you have to face MS. Pam’s unable to do anything physically, but has very little cognitive disability. I am proud to call myself a family caregiver and I cherish every day I spend with Pam. People say to me, “I don’t think I could do what you do.” I say, “Anybody can. You do what you have to do.”

-Ray Heron

Since 2009, Lifespan Respite grants have supported better coordination and delivery of services to family caregivers like Ray in 30 states and the District of Columbia. Vouchers to help family caregivers pay for respite are—or will soon be—available in a few other states, and the program needs ongoing funding. In honor of last month (November) being National Family Caregivers Month and as Congress wraps up its Fiscal Year 2014 budget, MS activists urge continued funding of the Lifespan Respite Care Program. Our nation’s more than 60 million family caregivers save our government $450 billion annually and—more importantly—enable loved ones like Pam to stay at home surrounded by their support networks and connected to their communities.
Tags Activism & Advocacy, Caregiving      12 Appreciate this
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  • Michelle   Dec 9, 2013 10:53 AM
    You are an "ANGEL" sent from God above!!
  • sadmom   Dec 9, 2013 10:55 AM
    Thank you for this comment. I'm going to print it for my family to read. They never think there is anything wrong, and laugh when I am tipsy. Thank you from the bottom of my heart.
  • Jennifer   Dec 9, 2013 10:57 AM
    Thank you for sharing your story. I am also a caregiver to my 60 year old husband. He was also diagnosed about 30 years ago as well. Not easy but would not change it for anything he is my best friend. It is nice to know there is a program out there to give us some help at important times. Best of luck to both of you.
  • Dorothy Anderson   Dec 9, 2013 10:57 AM
    What a beautiful love story, and also information on ways to get he
  • Kathie Frattarelli   Dec 9, 2013 11:00 AM
    What a wonderful story! Reminds me so much of my parents. They have been married for 45 years. My mother was diagnosed when she was in her late 20 s. it has progressively gotten worse and she cannot walk or use her hands, but her mind is good. My dads amazing with her and they have a wonderful marriage. Reading this story of what a wonderful husband and caretaker that Ray and my dad are show they are true angels:)
  • Dorothy Anderson   Dec 9, 2013 11:00 AM
    Trying one more time...What a beautiful love story, and also information on ways to get needed.
  • Tammie Marshall   Dec 9, 2013 11:04 AM
    My BF also has MS...diagnosed in 2003. He was taking the shot every two days, but is now taking Gilenya the pill every day and has clearer vision, not as much stumbling....try this!
  • angie   Dec 9, 2013 11:08 AM
    I have work in long term care for 25 years. if your wife has Medicaid she does qualify for long term care short term. ask about "respite" careusually they will cover up to 7 days in a skilled facility.
  • Lisa   Dec 9, 2013 11:12 AM
    Happy to know you got some help! My dad cares for my mom, who was Dx in 1980. Since then, I & two of my sisters have also been Dx. My dad does for my mom things I could never have imagined. Bless you both!
  • carolyn   Dec 9, 2013 11:29 AM
    beautiful. a true love story.
  • Melissa   Dec 9, 2013 11:32 AM
    Bless you for your love you give everyday. My husband was diagnosed two years ago and so far it is only numbness now and again. My prayer is that this is all that will happen, but I know we might face more obstacles with MS in the future. As I sit in the hospital waiting room for his annual MRI, I pray that we can find a cure. Happy holidays to you!
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    Jon Chandonnet  Dec 9, 2013 11:33 AM

    Your story of love and devotion with Pam is an inspiration. Thank you for sharing.

  • Dawn   Dec 9, 2013 11:36 AM
    Thanks so much for posting this! My husband Carl is my caregiver and is truly wonderful. Unlike your wife, I'm still pretty high functioning but need help with laundry, cooking, showers and dressing. I'm pretty much home bound and I would be so lost without him. I'm so grateful for him as I'm sure your wife is for you! You are a wonderful man! God has blessed us with people like you!
  • Tiffany   Dec 9, 2013 11:49 AM
    You are truly an angel, you two are very lucky to have each other. Keep the love going and I am so glad to heapre that you got help. Respite care is a great thing to have for amazing people like you!
  • Pamela   Dec 9, 2013 11:51 AM
    From one Pam to another, we are so blessed to have a living angel in the form of a loving husband. I have not progressed so much as your wife, but my life would be unimaginable without the support of my husband. Thank you so very much for taking the time to post this. I know that you don't do what you do everyday for accolades or recognition, but please accept my HURRAHs!! on behalf of all of the caregivers who are unsung heroes.
  • sherry   Dec 9, 2013 11:52 AM
    im a c/o leader of a MS group here in Killeen tx. I like to know where you live ? I have MS for 8 years.
  • Tracy Hively   Dec 9, 2013 11:58 AM
    I was diagnosed with MS when I was 21. Had my first symptom of numbness at the age of 15. I am 36 now and am still able to do things for myself. Although, walking is a challenge. Walls are my BFF. LOL Thank God for caregivers. Blessed are the ones who take care of others. Happy Holidays!! I love this magical time of year and love this inspirational love story. You are a hero in my eyes.
  • francyn   Dec 9, 2013 12:09 PM
    The job you are doing is so hard. It's taxing on you, it's tiresome's blessed. You are a blessed man, with the heart of gold. Caretakers are incredible people, and you, are a relentless soldier. God will bless you, and I want you to know how much I admire you.
  • Amy   Dec 9, 2013 12:10 PM
    I'm so glad they are people like you in this world! I have MS and I have no use of my left arm/hand and walk with a brace for foot drop on left side. I depend on my children and husband for help. GOD Bless u sir!
  • Debbie   Dec 9, 2013 12:32 PM
    God Bless you and Pam. Your's is a very inspirational story!
  • Sherry   Dec 9, 2013 12:40 PM
    I was dx'd in put a smile on my face to see the care you give your wife, Pam. She is a very lucky lady to have such a devoted husband, and it sounds as though you have a wonderful relationship.
    I am still able to get around myself, and do other things that I feel very fortunate and thankful. But when you read stories like this it makes me want to say how proud of you that I am, and what you have done to make your wife's life more comfortable.
    I have been a home health aide myself and I know what it takes to do the things you do. And I know your wife, Pam is proud, too!
  • Avatar
    Kim  Dec 9, 2013 12:48 PM
    Ray - Great post! Thank you for sharing the practicalities of daily living.
  • Nikki goodall   Dec 9, 2013 12:56 PM
    Lovely story my dad cares for my mum who has ms and has done for nearly 30 years so I know how tough it must be. God bless you, your an angel xxx I bet your wife adores your kind heart xx
  • Desi Justis   Dec 9, 2013 1:06 PM
    I'm honored to know you! God's blessings on you and your wife.
  • Jenn   Dec 9, 2013 2:15 PM
    That is true love! What a blessing that she has you!! Model of a great marriage!!
  • J.Campbell   Dec 9, 2013 3:21 PM
    What you are doing is great. Hang in there and stay head strong. Your time is preciously spent. May the good Lord continue to Bless you both.
  • Tina   Dec 9, 2013 3:38 PM
    SO VERY GRATEFUL, to all spouses who are caretakers! I was diagnosed with PPMS in 1994 and have to take what comes. This is made so much easier to take since I know I am married to another angel like you Ray. The indignity of some tasks are easier to endure when you know, the person taking care is a person who loves you! But I am also grateful for the information that there is help out there for emergencies. I wish you many more years to enjoy each other.
  • Sarah   Dec 9, 2013 4:14 PM
    What a beautiful story. My husband was diagnosed about 1.5 years ago at the age of 30. I know there's a long future ahead of us, and I'm never leaving his side. He means the world to me "in sickness and in health"
  • Scott   Dec 9, 2013 5:05 PM
    Well done, Ray. No one will give Pam better care than you.
  • James Boundy   Dec 9, 2013 5:28 PM
    I met my wife/ex-wife/soon to be wife again/best friend/ Pam 3 years ago. She told me when we met she was diagnosed with R/R MS in 2005. I have been with her every step of the way since we met, but 3 months ago she divorced me because she didn't want to be a "burden" to me. I was the hardest time we have went through yet in our relationship. Now, after discussing this she realized she could never be a "burden" to me. I love her with all my heart and will always be there for her no matter what happens. We are planning on getting re-married on Valentines day. Thank you for your story Ray, and the valuable information you have shared. Through love and commitment we can at least give them comfort while we wait diligently for some kind of a cure.
  • Patricia Bumgardner   Dec 9, 2013 6:40 PM
    Thank you so much. My husband was diagnosed about 2 years ago. I love him so much. He told me then if you want to go please go now. I would never leave him and on some days it is hard to make sure he is reassured that he will never be left alone on this terrible journey.
    I know this is not true for everyone and I hate to think about those people left on there own heart broken and physically broken.
    I love your story. It is Beautiful.
    I hope you have many, many more wonderful years with Pam.
  • Sarah   Dec 9, 2013 8:14 PM
    Thanks Ray for sharing such a wonderful story!! My husband Brian, got diagnosed with relapsing-remitting MS in 1998. We met in 2003 and married in 2005 and I wouldn't ask for anyone different. Let's fight for a cure!!
  • Carol   Dec 9, 2013 11:12 PM
    I was diagnosed in my late 20's I have an amazing husband who helps me every time I need him. I am still able to care for myself for the most part but my eyesight is going and the fatigue. I appreciate you Ray and telling your story. God bless you both
  • Charlie   Dec 9, 2013 11:57 PM
    I read your story and could appreciate your devotion. My sister has MS and her husband is my hero he does most everything imaginable and more to ensure her comfort. As my brother is blessed so are you, and as I pray for him I will also keep you in my prayers.
  • Sherry   Dec 10, 2013 7:32 AM
    As someone with MS I think that is wonderful! Right now I can pretty much take care of myself, but it may not be this way always. But it is so wonderful tp read loving stories like yours, my husband said to me the other day, " it's me and you babe, we gonna make it". I told him that "we sure will".
  • Patti Brennan   Dec 10, 2013 9:22 AM
    God sent you to Pam for a reason. Pam was my friend in high school and it is so hard to see what MS has done to her body.
  • michelepairgin  Dec 10, 2013 9:39 AM
    I think you are a true ANGEL and I have hopr for the future My husband left me 8 months after my DX and lives in Arizona while I am in Michigan trying to figure out how to get money to divorce him and have him help support me because SSI doen't get it. Thank you for restoring my faithin marrige <3
  • Terri (Kirk) Watson   Dec 10, 2013 11:13 AM
    What a beautiful story for sure - you and your family should be so proud of the care you have given over the years and continue to do so. We have a few friends who also suffer from MS - they are in our daily prayers and we will keep you in our prayers as well.
  • Gerri Ballas   Dec 10, 2013 12:47 PM
    What a beautiful tribute to his wife and the obvious love that they share. My husband is my rock, and keeps me grounded and focused. Without his caring and love, I could not function as well as I do.
  • June Moore   Dec 10, 2013 7:30 PM
    I have been living with MS for over 25 years. My husband Doug, has been my caregiver. Like you, he does a lot for me. In January, we will be married for 50 years, and even this was not the life we planned for us, it is a life we have together. Thank you for sharing you and Pam's story.
  • Avatar
    babygirl18  Dec 11, 2013 12:55 PM
    That is so sweet and a wonderful story!
  • cassie kephart   Dec 12, 2013 10:05 AM
    Reading what you wront touched me. I was diagnosed with ms December of 2013 on the 23 to be exact. Merry Christmas to me but I did not let that stop me from having a wonderful Christmas with my husband and very2 wonderful daughters willow 5 and brook 2.
  • cassie kephart   Dec 12, 2013 10:21 AM
    Reading what you wront touched me. I was diagnosed with ms December of 2013 on the 23 to be exact. Merry Christmas to me but I did not let that stop me from having a wonderful Christmas with my husband and v2 wonderful daughters willow 5 and brook 2. So it's been almost a year since I got diagnosed and it's been rough have missed a lot of work down to part.time 3 days a week now. I work graveyard as a stocker at a general store we all know as walmart! Been doing that shift 3 and half years now so we don't have to put the girls in daycare. So as part of that on the night's I work I only sleep from 5pm to 9pm that only 4 hours sleep! But since I we t to part time 3 days its been ok. So.e days I feel like it's hard to wAlk. My feet feel like I wAlking on bone and it's exhausting. But I think of myself as a tough little farm girl how I was raised and I will not let this beat me. I need to keep going till I can no longer go and that's whAt I will do.
    My husband Chris is amazing. I am doing the once a week shot avonex and I so don't do needles so yep Chris does it for me! He is my everything and I am his. I just know that if things turn for the worst or where ever the road leads us he will be right there by my side. Its truly amazeing how two people stick together for life. Thank you for sharing your story it truly touched me.
  • BOB   Jan 26, 2014 4:03 AM
    Well done!!
    However I feel really guilty ... I have looked after my wife who has PPMS for 20 years, the last 6 of which she is bedridden can only move her head. But I've had enough and I'm leaving her. I will make sure care is in place before i go but I feel I need to think about my life, I'm 56 years old and don't want to live this life anymore. I have also fallen in love with a lovely person, someone I want to spend the rest of my days with. I will always be a part of my wife's life and will visit her regularly, I will never tell of about the other person because she doesn't need anymore stress or upset in her life. We have been married for 28 years have two grown children. I need my life back. I know people will make comments about how cruel I am but dont we (carers) need a life too! I dont want to leave my wife by dying prematurely which I fear will be the case if I carry on like this.
  • William Mcelley   Oct 2, 2017 8:58 PM
    I love pam cassaro with my whole heart and i would take care of her for ever it hurts me seeing her like this when is it going to really kick in so we can go on a cruise s and hawitt