The following is written as my contribution to Blog Action Day. The theme this year is “The Power of We”. To register for Blog Action Day, you have to choose a category from available options for your blog. I chose “personal”.
So, personal it will be. It will also be brutally honest. You have been warned.
If you are a carer, I hope that something I say helps you realise that you are not alone. This post is dedicated to all People with MS and their carers and support groups specifically, and to individuals in similar situations in general. I shall be talking about caring with carers in mind, and from the perspective that one partner is taking care of the other, although it should be said that there are many variations on this theme.
I hope there is something in this post which will help you to stop and smell the roses – and actually enjoy the smell!
If you are a “survivor” who needs others to take care of you, do not feel bad when you read this. If it hurts to read what follows, talk to your carer and work it out!
A whole different ball game
Do not for one minute imagine that caring for someone who is terminally ill, or someone who is disabled, is like taking care of your spouse when they have the ‘flu, only more long term.
It is a whole different ball game. Completely different.
I am “a carer” of my partner, whose has relapsing-remitting Multiple Sclerosis (MS), which was finally diagnosed in 1996 after about four years of us travelling on the medical merry-go-round. And yes, it is scary. Why?
Because no matter how loving you may be as a carer, there is always a part of you that wishes things were different. You wish the illness would go away. You pray the illness will go away. You pray for superhuman powers to pull the disease out of your loved one’s body, like so many hairs clogging up the plug hole. You wish it were that simple.
The simple, hard truth is that nobody wants to be sick. Another simple, hard truth is that nobody really wants to take care of someone who is sick. Great, I am glad we have cleared that up right from the start.
Two halves of an orange
A few months after João was diagnosed, we attended a get-together of the Multiple Sclerosis Society of Zimbabwe. At that gathering, the husband of a PwMS (Person with MS – dry description, isn’t it?) said to me quite loudly over the heads of several people, “You do realise that you both have MS, don’t you?”
Having never met this man before, I dodged this big question at first by saying, “Well, you’re not very good at small talk, are you? We do have to thank him, though, for pushing through his own pain, and for reaching out to us.
Yes, you do. You both have whatever the illness is that neither of you want. You both have it.
Imagine that as a couple, you form an orange, say. A nice plump, bright, shiny, ripe orange. Okay, now cut that orange in half, still imagining that each half forms part of the whole orange. Pick up each half, one in each hand, and look at the juicy inside part of each. Do you see any difference between them – apart from the pip distribution? No? What did you expect? One half to be pink, and the other green? Of course not. They are the same. Whatever one half has, the other has too.
You may pick holes in my analogy if you like. But if you are a carer or a survivor, you would be better served coming up with an analogy of your own. Draw a picture, write a poem, make a clay sculpture. Do whatever you need to do to accept the fact that two of you, not one, has to deal with the dreaded dis-ease. It is best to do this together. Or you can do your own thing separately, and then have a “meeting” to talk about it together.
Cool. So far, no-one is crying.
“You both have MS.”
Well, that’s easy to remember, isn’t it? This means that you have to tell members of your family together. And you have to be prepared to have answers to all their questions. Very funny, very cruel joke. You haven’t a clue what is going to happen, neither do the doctors. No one can tell you much. Do not leave the telling up to the PwMS. They are in shock. You are in shock. The very least you can do is hold hands. It will give the illusion of strength that you need.
If you cannot stand the heat, get out of the kitchen – now!
I have heard many people say how dreadful it is that so-and-so left their husband or wife or partner, etc. when they first received the diagnosis of MS. Well, you know what I say to “the departed”? Well done, and good riddance!
Well done for recognising you cannot stand the heat, and well done for being honest enough to leave before things get really difficult. Good riddance, because no sick person needs a carer with a fur-ball of resentment stuck permanently in their throat to hang around. Let the person leave the relationship. Remember freedom? We all have it. And we all have to deal with our own [quick — what’s a euphemism for that messy stuff?] before we can effectively deal with someone else’s.
This may sound harsh in the extreme, and very unsympathetic of the PwMS, but try to put yourself in the carer’s shoes two or three decades later. Remember this is not the ‘flu, or salmonella, or appendicitis or pregnancy complications, or a broken leg or a bad case of wind. This is MS. Two great big scary capital letters: MS.
MS diagnosis can have the opposite effect: it can bring two people together. I know one couple who spent the better part of their honeymoon getting hyperbaric oxygen treatment for the MS sufferer. The rest is, as they say, history. Love is love. Their two sons are getting to the age where marriage will be in their air soon, so they had better keep a close eye on what their Greek grandmother is up to!
The permanent cast
Now that we have the permanent cast together, let’s get this show on the road.
As the carer of the PwMS you have to make, and affirm, a conscious choice. If you are altruistic by nature and bubbling over with can-do optimism, this initial phase will be a breeze, and may last years and years. Choices have consequences. Once you make the big choice – the commitment – the smaller choices are informed by the big choice, and often simply fall into place. But there is a lot of separating the wheat from the chaff before everything becomes as clear as mud, as it is intended to be. This normally involves a lot of talking, crying, screaming, shouting, talking, whispering, hugging, talking, and yes, and laughing.
So far all I have done is describe the mechanics to ensure an honest relationship between two people. This clarity is essential not only because it helps you weather the storms later, when the situation suddenly far outstrips your coping mechanisms; it is essential so that you have a united front with which to face the world.
The world. Ha! By “world”, I mean family, friends, curious onlookers, people from your local MS society, doctors, and a whole lot of people you have not yet met.
United we stand! (but sometimes we need to sit down)
United means the carer phones people at the last minute to say that you cannot attend their party. Oh, why? Erm, MS special at our place. Say no to invitations often enough or cancel at the last minute and pretty soon you will have no social life at all. This will not help alleviate the fatigue and depression – two recognised symptoms of MS. United means saying “don’t count on us, but love and support us anyway!”
Believe me, people generally do not think of the implications of what they suggest sometimes. Imagine you are phoning to say you cannot make it to a friend’s special dinner because your partner is having a bad few days. Your friend suggests, “Well, why don’t you leave her at home and come by yourself? We can always give you some food to take home for her.” Yes, like that. Your beloved has been reduced to “her” and has been reduced to the same category as “would you like to take the bones home for your doggy?”
Get your “telephone smile” act together, because there will be countless other attempts from various quarters to split you up. Some people think they are doing the carer a favour my making such suggestions. Well, like most puppies, I do not like having my nose rubbed in it, especially if I really do not hold myself accountable for the offending widdle in the first place! Do not succumb to these silly pressures. Stay together at home with your loved one. Enjoy each other’s company. You do not know when the MS “will get worse”. All you know is that eventually, it is inevitable that it will. The learning curve becomes a learning spiral, but to start with, it looks like a common or garden variety curve and navigation is not as problematic as all that.
United means living the maxim, “Love me, love my partner, love our dogs”. We had three pedigree Labradors once, two of which well-meaning folk advised us against getting as puppies because “João’s MS is getting worse”. Best two puppies we ever had. They only ever knew João with MS, and gave her much more unconditional love than I ever could. All the time. Good dogs!
The reason for the telephone smile is that everybody in your circle is learning. And family and friends do want to help. as the carer, you become a mediator. What do you and your partner want them to do to help you? You decide together. Then the carer closes the deal. In the early days, I could not have done without the help from my mother, and other friends, taking João to therapy once a week. Or the visits by various alternative medical people to our place instead of us having to go out. Or the many kindnesses which happened by surprise, out of the blue.
Help is a two-way street. First world countries normally have government or quasi-government institutions which provide help if you fill in all the correct forms. Here in Portugal, there is a special law dealing specifically with provisions for people with MS. Imagine that! João has been receiving Copaxone® injections at no cost to herself for the last three years. The actual cost of one month’s supply of the the drug is more than I typically earn in a month. She gets the benefit of the drug, and I get to become quite nifty at giving subcutaneous injections. Imagine that! (Yes, from time to time it does get a bit like The Rocky Horror Picture Show: I say “get on the slab, and I’ll give you a jab” to which João may respond, “oh, yeah, let’s do the time warp again”. She is a truly excellent “patient” and a very patient patient at that. She has me for a carer, after all.)
In Zimbabwe, help for people with MS came from the local MS Society, a registered charitable organisation. João and I were both members of the society, and served on the committee for a number of years. Suddenly, you become aware of all the other people in the same boat as you. Some of them are in a leakier boat. Some of them are actually boat builders who still cannot get used to the idea that they will never finish the boat they are “currently working on”. You get to know each other, and even like each other.
One of the fundraising activities was the production of Christmas cards for sale. This involved artwork. Oh, yay for a cooperative sister who is conveniently also an artist!, paper donation (Yay for contacts in the paper business!) envelopes (Yay for contacts in the wholesale stationery business!), money to have the cards printed (Yay, for one-man operation who printed my business card! And, Yay! for the head of Zimbabwe’s leading computer sales company, who remembered João with fondness as the only 20-year-old female in a little town in that country’s Eastern Highlands who rode a motorbike (back in 1977 in the height of the war), and for all the world looked like Janis Joplin, long hair, the works! He bought 1,000 cards straight off, without even seeing the two designs. And he called a few of his staff into his office and we all had a nice group prayer. As I have not mentioned before, things get a little crazy when you care for someone with MS.
If you think all of the above is fantastic, the best bit for me was the day I roped in as many people as I could to fold cards and pack into plastic sleeves of five cards and five envelopes each and seal with adhesive stickers (discount price, the lot). I watched my mother hit it off with a fellow committee member and mother of a person with MS. This was the beginning of a friendship, which took a life of its own and in many ways became independent of anything to do with MS. This was help for my mother, and help for a mother, and co-carer of another person with MS.
The embarrassing bits
This post is getting too long. We always used to bemoan how so very few “how to” manuals talk in depth about the embarrassing bits. In no particular order these would include problems with vision, tremors in the limbs and head, walking and falling down as if drunk, speech impairments, incontinence (bowel and bladder), developing quirky table manners and, of course, what we have all been waiting for, sex. Do not be alarmed, these things do not normally have to be dealt with all at once! I am not afraid to talk about them, and neither is João, but I should add that you also need to preserve the dignity of the person with MS, and your own, so I will not discuss the ins and outs of portable toilets in this public forum. Privately, of course, you have to talk to each other, and sometimes seek advice individually or together from others. You have to, from a practical point of view, if nothing else. Believe it or not, there are a range of options available to deal with all of these aspects. You are welcome to leave the name of your MS organisation or carer’s support group in the comments below, or your e-mail address with an “I need to talk” remark if that is what you need to do, or need pointing in the right direction. The Multiple Sclerosis International Foundation has a very well organised website. I am not a qualified counsellor, nor am I a member of any MS society at the moment, and perhaps I will soon be in need of help myself, but I have hit the heights and depths in all this scary caring stuff, and am happy to help if I can.
The shortcut to dealing with the embarrassing bits – and preparing meals, so I gather – is to take advice from the Beatles – “All you need is love. Love, love, love is all you need.” ♥
Allison, the scary carer.
The sequel to this blog can be found at a post oddly entitled The Scatterling series – 40–43, written on 20 February 2016.
© 2012–2016 Allison Wright