We’ve recently amended our vows a bit.
Instead of the usual “in sickness and in health” we have amended it to – “in sickness and in health, unless you become a zombie, in which case I promise to shoot you in the head”. Because guys, you never know. The zombie apocalypse is totes legit and is there anything worse than seeing your partner desperately wanting to eat your brains? I’m not sure.
Bad jokes aside, you’ve probably noticed that the subject of marriage has been on my mind for a while now and the feedback from the couple of posts that I have written on the topic, it’s clearly on your mind too – thank you for commenting and sharing your stories!
Mostly we’ve discussed how hard it can be to sustain the love that brought you together and to make sure that both of us are aware of the work that it takes to stay this way, despite being in relatively good health. But what happens when your commitment gets challenged? What happens when “in sickness and in health” becomes a reality?
I’ve spoken about it a couple of times over the years, so some of you may be aware of our family history. If you’re not, here’s the lowdown. My Dad developed Muscular Dystrophy soon after he turned 50. The effects of this were that his muscles slowly degenerated over time and he went from being an active father and husband to not being able to walk and eventually to having everything done for him before passing away a couple of years ago at the age of 66.
Throughout this time, despite the ups and downs that it brought with it, my Mom was there. She was committed to him as she said she would be. And it’s only now, two years after his death, that I am able to sit here and not only reflect on the effect it had on me, but what it must have been like having your marriage tested like that. Wondering if I could do the same if we were in the same position.
Instead of speculating the range of emotions that you could experience in a situation like this, we obviously had to go to the source. I asked my Mom if I could interview her on what it was like having her relationship change so much.
Thanks Mom for agreeing to do this – you’re the best and a true example to me of what being a great wife is.
* Let’s start at the beginning. How did you meet Dad and how did you know that he would be the one that you would spend your life with?
I met him at a Bible study our church had. He was staying with his mom at the time and she brought him to a braai and movie night – “Chariots of Fire”. I was about to move from Bible Institute where I had been working, into a flat in Wynberg and his mom ‘kindly’ volunteered his services to help me move. I had borrowed a truck, which turned out to be a little bakkie and we had to make many trips. One time we stopped on a slight hill and the brakes weren’t holding. He went round the front and held the bakkie firm. I was amazed at his strength and ironically, his muscles!
We went on a few dates from there, he was working night duty at the Abattoirs as a night watchman (he was a recovering alcoholic and was just getting back on his feet) so our dates were very basic – early evening braai at Noordhoek on his night off or a visit to the Masque Theatre in Muizenberg with his mom. etc. Nothing fancy. Roly had a lovely sense of humour, although weird at times – which fitted my sense of humour. He was handsome and kind. We got engaged after 3 months and married in the first year of going out.
* After getting married you had children quite quickly – (that’s me yay!). How did that affect your marriage?
We were very excited when I discovered I was pregnant, but apprehensive. I was 32 then and he was 38, so quite “old” in those days to start a family. How did affect our marriage? Well, we learnt new things about each other, Dad wasn’t squeamish about mopping up vomit spewed down the passage. He would calmly take a bucket and wash it up. He would rock you to sleep walking up and down our little passage so I could get some sleep. The birth of Shane 16.5 months later was the same. A “real hands” on dad. Our babies drew us closer. We did practically everything together.
* Usually after falling madly in love, getting hitched and having babies, things tend to calm down and you find yourself with a bit of extra time on your hands. What kinds of hobbies were you and Dad involved in?
We were very involved with our church in many ways. Roly led an Alcoholics Victorious group at St Timothy’s. We were both in the choir, you were both old enough to come and play while we practiced. We still tried to do everything together as a family. Roly was very talented in making things. The garage was his sacred space – everything had it’s place and he’d spend many hours in there making all kinds of things. He made me a cupboard out of an huge wooden packing box that we used for years, two big wooden desks that you could use as tables, but if you flipped them on the side, they were rocking chairs too and even a pergola out the back. A Barbie bed for you, I made all the bedding. And quite a few wooden cars and things for Shane. Phew so many things, if we talked about it he could make it, and he did. I attended sewing classes with his sister, Jenny, for quite a few years and made many outfits for you both and a few shirts for Rols and some jackets and clothes for myself.
* If you could describe your relationship pre-diagnosis, what would you say about it?
Our relationship was great, the normal ups and downs of marriage of course but we always had a pretty good relationship.
* When you both started noticing that Dad may have a problem, how did it make you feel to know that there might be something wrong?
It all started quite subtly and slowly, he would trip on stairs and stub his toes and they would bruise. We thought there was something not right but we were not thinking it was anything really serious. By that stage he was running his own tiling company and was battling to get up of the floor after a days work. A friend suggested that it was probably more than getting on in years and that we should get it checked out. We were quite devastated when we were told it could be one of three things – Motor Neuron Disease, Polymyositis or Inclusion Body Myositis. It was quite a while before we got any official diagnosis. Lots of tests, including shock treatment, with his feet in a bucket of cold water and needles in him. Not nice at all. Eventually a biopsy confirmed that it was Inclusion Body Myositis. A pretty rare disease that not much was known about. Affects men over 50 and he was like 1 in a million affected. In the end he knew more about it than the local doctors, as he did extensive reading on it whenever he could find anything on the topic.
* When you got the official diagnosis, what kinds of conversations did you have together about the future? Was it awkward to talk about?
It was awkward at times. We weren’t sure just how fast the progression would be so you didn’t want to talk about the worst when we were still at the beginning stages. We went to see about moving into a Retirement Home and were told that we would probably be separated as Roly would need frail care eventually. I remember we went to a cafe for lunch and we discussed this. One of the things he said was that he never wanted to go into frail care. That immediately put pressure on me from the start and that was before the official diagnosis, so it was always at the back of my mind. We were still young – well, relatively, he was 53 I was 47.
How would this affect our future? We would try and make good of our future together. No-one knew what the prognosis would be – his disease may just stop or it may progress, didn’t know what rate it would go. The Wimpy then became our place to talk, it was funny we always ended up there at Kenilworth Centre and discussed things.
* I remember Dad having to take quite a few experimental meds in the early phase of trying to stop the progression of the MD and the effect that it had on him. And even after he stopped taking the meds, the seriousness and finality of it all was hard to bare for him and this obviously had a knock on effect for all of us. It affected my relationship with him in many ways as I’m sure it did yours. What was it like adjusting to this “new” personality in your husband?
Before the eventual diagnosis he was put on 13 Prednisone (cortisone) a day. His personality changed. He got VERY moody and could literally chew paint off the walls in his anger and frustration. He also developed a “buffalo hump” I think they called it, on his neck which was uncomfortable for him. This was a very different person to the one we all knew and loved. It was a difficult period in all our lives. We all suffered in our own way and reacted in our own ways. I have never really been a ‘confrontist’ person, so just kind of internalized it all and just tried to do my best to keep up a normal home.
When he was diagnosed he then had to wean himself off the tablets as they had no good effect on him at all. It was a rough period and we all tried to do our best to help him to get through it in our own different ways. How can you lose your cool when someone can’t help what is happening to them? His cheerful personality did come back, he always had a sense of humour and tried to make light of things. I can just say it wasn’t easy for any of us, Roly mostly.
* As the years went by, the more you had to take on his behalf, helping him eat, pushing the wheel chair, getting him in and out of bed etc. How did you feel about your role changing slightly from being his wife into more of a caregiver?
We had always held hands when we walked / shopped / sat on the couch but now he had progressed from using a stick to a manual wheelchair – can’t hold hands doing that. It was one of the things that I really missed the most and makes me want to cry now when I think about it. It was a very important part in our relationship that had kept us very close. Fortunately it was a gradual change, took about 7 years till he was permanently in a chair, but then it sped up a bit. By then he was in a motorized chair which gave him a bit more freedom but also sped up the wastage of his muscles.
By this time he needed help with everything. Just getting a good nights sleep meant that I often needed to help him turn over as he could no longer do it himself, which meant that he slept better although I didn’t. Getting him in and out of bed meant hooking him up to the hoist, pumping it up and then carefully moving the bulky contraption over to the couch he always sat in. Even eating became too hard in the end, when he only really had the movement of one arm, but even then couldn’t really get it all the way up to his lips.
So slowly the relationship changed from wife/lover to wife/carer/breadwinner. I tried to do the bed/bath/toilet story for a long as I could but it was affecting me too as I had a full time job. It made such a difference having a wonderful boss, sometimes I would get a call from Dad and say, “Roly needs me” and he would say, ”What are you doing here?”. We lived about 8 minutes away so I could rush home help him onto the loo, with the aid of a patient hoist, get him back into his chair and then get back to work quite quickly. It took its toll on me as I also battle with back problems. We managed to get a day carer in during the week and one to help to bed bath on the weekends. Dora and Jenny were absolute stars and helped me with my sanity.
• You mentioned that it took a toll on you physically, but do you think this took a toll emotionally too? One of the many things that I had to get used to was getting a call from you or Dad and not expecting it to be about a sudden progression in his condition – I’d always get tense before taking the call. I had to keep telling myself that a call could just be a call.
Yes definitely. I never knew what a call could mean, always answered expecting the worst I guess. Like.. “I’ve just fallen again”. My ears got very attuned to the different sounds around the house so I knew if anything was wrong and would rush to see what had happened. So much so that if colleague at work who had had polio and often tripped – I would be in his office like a shot as I knew THAT kind of sound.
We set up everything for emergencies, a cell phone, a panic button round his neck, Skype, but one day the worst did happen. He bent down to get his tablet from his desk and his hands got trapped under his chest and against the desk and he sat with his head and chest bent over on the desk from about 10 am till I got home about 5. He was bruised and caked with salt from the sweat from trying to get to all the “emergency” things which all failed in the end. I then got a camera for my computer at work so I could see through Skype just how things were with him at any time. Very scary.
It was after that that we got the day carer. My Rescue tablets were never far away, he got 2 and I took 2 and sometimes you got two got 2 as well, every time something happened. I did tend to live on tenterhooks as I never knew what would happen next. About 6 months before he passed away I did go to the Dr for some Happy Pills and they made a tremendous difference to me as I WAS battling to cope emotionally and physically. Seeing your lifetime partner just fading away from the strong, agile, capable man he had been, to having to have EVERYTHING done for him, was terrible. We would have been married 30 years in the December if he had not had pneumonia which his body just couldn’t fight.
* How did your love for him change during this time?
Of course love changes as life goes on. It matures and you love your partner for who he is right now. Remember we all change. He had to put up with my changes and mood swings every month, haha, and didn’t give up on his promises he made to me and before our loving God. Of course I didn’t feel the same way I had when we first got married, had children and then our beloved grandchildren. I still loved him and had empathy for him and what he was going through. How hard it is to face the future when you know that even the muscles in that one finger that you can still use, might be gone soon and then no more FB or blog communications with the outside world (Roly was an avid blogger, so it runs in the genes)!
I had to daily put myself into his shoes to try and cope. It wasn’t easy and my family and friends know how I battled at times. Tiredness, stress, anxiety, frustration, impatience, pity, all played its part in my life at different times. I tried to be patient and loving, but didn’t always manage it but he knew that I was doing my best and appreciated everything I could do for him.
* What was the most difficult thing that you had to adjust to as time passed?
Not being able to just go somewhere together. It was always quite a mission to get the chair into the Kangoo and out again. The worst part for him was that he got car sick on long journeys so he opted out of going places. Even to church, it was just too much for him. He also had difficulty swallowing in the last few years so it was embarrassing for him to eat in public as he would choke very often. So ja the most difficult thing was not going out together anymore as a couple. That was hard.
Now that he’s not with us anymore, the hardest thing is coming home and not being able to talk to him about my day or fill him in on what happened at church or the person that I bumped into at KC. I keep thinking that I must tell Rols that and when I can’t it is sad. But I swallow it up and tell my dogs instead, but they just don’t seem as interested some how. 😉
• Do you have anything to say to other women who may find themselves in a similar situation?
It’s not easy. But we had committed our lives to each other, and before God, and we didn’t take that lightly. For better or worse, in sickness and in health, for richer and for poorer. All these applied to us. Maybe that’s why some write their own vows now and leave that out??
Having said that, your spouse is your spouse – we are all different personalities and react differently, but remember the love that you had for each other at the beginning. No, it’s not the same, it is different, but underneath all the heartache and pain – on both sides, let’s face it everyone suffers, and the kids as much, if not more in different ways. But you can get through it by actively working out those promises. It is very humiliating for the partner to ask anyone to help do those essential things that need to be done. Help them understand that you love them no matter what. You will get tired and irritated, and they understand that, they can see every day the effect it has on you. Try and make light of a situation where you can, in a way that won’t offend.
You do still have a life to live, curtailed though it may be. Keep up your sense of humour. Dress nicely, keep yourself to your normal standards. Treat yourself, if you can, to a massage or something relaxing. Keep up with your friends. You need that contact and it is very important. Have a few good friends that don’t mind if you unload on them at times, they care for you and want to help you, which helps you and your spouse in the long run. I am very grateful for my friends.
Don’t be scared to ask people for help. People sometimes want to help, but we think we are the only ones that can do it!! I have news for you!! If you can’t scrape enough together, or can’t afford it, try and get some outside assistance, it will help you and in doing so, help your partner, as he/she won’t feel like they are dragging you down. Remember that they are suffering from their illness/disease, but also from seeing you having to do everything and suffering in your own way.
Don’t be afraid to seek medical help. The stigmas that happy pills have is just silly. There are some prescriptions that are mild enough to help you and not have any lasting dependency. I stopped after Roly passed away – obviously in the prescribed way, not just stopped, but it made such a worthwhile change to me while I needed it.
I want to say that I could never have coped with it all without the love and strength from the Lord Jesus, from my children, family, church family and friends, and all Roly’s facebook friends who helped raise funds for his own wheelchair, and the Muscular Dystrophy Foundation who had lent us wheelchairs through the years.
Thank you Mom for sharing your story, I hope that it has been as encouraging to you reading this as it was for me.