Partner has become severely disabled

[Thomas]

Hi There,

I'd be very grateful of advice or contact with people who have a similar experience to myself - so far it seems unique enough that it is quite difficult to find people in a similar situation and most marriage / christian materials never really cover the issues.

I got married to my wife nearly 10 years ago and during that time she has developed Multiple Sclerosis that has become progressively worse over the years. Nowerdays she is basically paralysed from the waste down, has poor coordination of her hands and is doubly incontinent. Furthermore she has developed some quite severe cognative disabilities, which I am told are right at the worst end of what can happen with MS.

Over the years I've taken her to hospitals, moved house twice to find a suitable house, bought expensive equipment, struggled to find adequate care and support. We live in an area well away from family.

We are heavily dependent on care, but it is difficult to find carers and even when we do, my wife is consistently agressive against them to the point that they end up leaving (The same goes for me when I do the care, only I can't leave). Each week and month I'm not sure if we will get enough care support

My wife has become very close to her family in Germany/USA to the point of obsessiveness; typically she calls them 8-10 times per day for long periods of time. They are the number one priority in her life and the emotional impact on me is similar to if she were having an affair. Although her family telephone often, they provide almost no practical support except for regular sums of money. Often, she spends her time complaining about me to them. I have attempted to discuss this issue with her but got nowhere; communication is very difficult.

She is also obsessed with studying in a university and getting a career, which is unfortunately just about impossible due to her significant physical and mental disabilities. I have tried to support her many times in trying to study over the years, but she is not able to multiply one digit numbers easily, forget PhD study.

Currently, we are lucky to have a very committed christian carer, she is also finding it hard going and tells me she can only do the job because of her faith and the fact that she is only here 3 days/week.

Partially because of the care situation and her cognitive disabilities, my wife has become quite stubborn and lost most sense of personal responsibility. She is not able to do anything herself unsupervised. I have to take care with money, as she will spend significant sums on things she does not need without thinking, with her use of the internet and phone etc. She has long since stopped valuing my support for her.

I am a committed christian and take the importance of the marriage covenant seriously. Unfortunately my wife has indicated to me recently that she feels that she can do what she likes as I am bound by oath to her. I do not want to paint her in too bad a light; she has a christian faith (although it seems to have declined with the onset of her cognative disabilities). Communication with her is strained and difficult due to her poor short term memory and concentration skills.

I have asked for advice in the church (a large Anglican student church with ~1000 members) but found it unsatisfactory; they indicated to me how marriage is for life and I have no way out but then just left me too it. They are not able to offer more than 4 counselling sessions due to demand. They offered me some marriage tips/material, but it deals with mainstream problems; talking about communication skills, children and taking walks in the park is all rather meaningless. No-one ever offers any practical help. My wife consistently makes up accounts of our situation to the church which are untrue (I think partially cognative issues and partially not facing the truth) which they seem to take at face value; I do not want to contradict her and hence find it difficult to integrate inoto the chuirch. Since the church is mostly students or young families we have drifted to the sidelines (In fact nowerdays on Sundays I feel too tired to go most of the time)

After many years of this I feel burned out and without the help of the current super christian carer I don't know how I'd cope; however carers always move on. There is a constant danger of ending up with no care support due to the severe shortage of carers in our area. I've considered residential care for my wife, although I fear I would be neglecting my duties towards her and abandoning her.

The only person who really understands the situation is a friend who spent 10 years caring for her grandmother with whom I have e-mail contact and who lives in a different country. However she is a single female of my age and although she is a committed christian, I feel concerned about becoming too intimate with her.

So... does anyone have similar experiences ? Is there such a thing as christian help or advice for young christian married couples facing severe disability ?

[Liz]

Dear Thomas

I am not in your situation but I lived as neighbour to a couple who were in a similar situation. The wife was diagnosed with MS soon after they married in their 20s and ended up totally dependent on her husband. Fortunately this lady did not have the cognitative problems that your wife faces and so the issues they had to face were different. Knowing something of what they went through until the lady died a few years ago, my heart goes out to you.

I know too that members of the church however caring can struggle to know how to support you and often fail to realise how much consisitent, long term support is needed. Many of us are overwhelmed by the enormity of what you face and fail to realise that we don't have to do everything but that by being there for couples like you even in a small way, we can make the journey a little easier.

It seems that there is huge pain in you because of the way your wife is responding to you and the hurt and bitterness she seems to express. I think that few of us can comprehend how hard it is to come to term with such a horrible illness. In addition the very nature of the disease means that it can effect brain function as you have found.

In the first instance can I encourage you to look for support further afield if necessary. Sad though it may be, you may need to seek help beyond your church. The MS Society (http://www.mssociety.org.uk/) has lots of information about the disease and support for carers. You need support to help you continue, so please seek it out. Another organisation that helps with those dealing with disability is Through the Roof (http://www.throughtheroof.org/). Perhaps some of their materials might help your church to uderstand more of the situation. Have you considered making an appointment to see one of your pastoral leadesr and sharing what you have written in your posting with them? I know you don't want to contradict your wife, but it is importnant for the leaders of the church to know what you are facing too.

You are right that their are few resources that offer support for those facing chronic illness and disability in marriage. There are a number of organisations that offer enrichment courses at venues accessible to those with disabilties, but these would not address the particular issues that you face. However an improvement in your communication would impact all the other areas of your relationship provided your wife was able and willing to participate in any course.

However, you seem to be saying that your wife does not seem able or willing to address these issues with you at the moment, which is why I would encourage you to seek help for yourself to enable you to face each day as it comes. If your church can only offer a short course of counselling, then look further afield. You could try some of the Christian Counsellors listed here (http://www.2-in-2-1.co.uk/images/mr/mrdirectory.pdf). Do your best to make space for yourself to get refreshment and exercise whenever you can.

I know these snippets of advice are only scratching the surface for you, but I am aware of the huge cost that your continued care and commitment to your wife involves from watching my friends go through it. It is hard to go on loving when a loved one doesn't seem to appreciate what you are doing or going through, but the Lord understands - many of us treat him like that much of the time. He also knows that we can come to the end of our own resources. I pray that He will give you the grace to go on at such times and new people around you who can support you.

Keep in touch

Liz

[hamfist]

Thomas, If you're still around on this forum, please email me at brshop"at"ntlworld.com. There are many similarities in our situations.
Alan