Tough Decisions

When is the right time to go to a care home?

I realize that this question may shock many of you here, especially those who can still be relatively active despite their MS. If someone had mentioned the mere word 'care home' to me five years ago, I would have asked them whether they're crazy. Why would I ever want to even consider something like that? After all, I'm married and my wife is my main carer. Yes, my MS may be progressing and gradually robbing me of my independence. But I have my own home and can do as I like, obviously within the restrictions that the MS is placing upon me.

Being faced with the question for the first time

That was also my reaction two years ago, when my doctor mentioned the two words to us for the first time. Granted, three years on, I had lost a lot more of my physical abilities and was in need of much more care than before, which was becoming more challenging for my wife, who is not only my carer, but also has a quasi-full-time job (as money has to come in from somewhere after all).

I remember sitting in the doctor's office with my wife by my side, at first stumped at the audacity he had to suggest something as outrageous as this.

His argumentation was that he felt it was no longer safe for me to spend extended hours on my own during the day, without anyone there to look after me, or be at hand in case of an emergency. And that the burden on my wife may have become too much. But I didn't want to hear any of his 'silly arguments'. I went into a rage and called him names that are unfit to be printed.

Soon after that, I changed my doctor.

Deep inside of me, though, I knew that it had become very tough on my wife, and I saw that she was suffering. So a solution – at least temporary – had to be found. The initial idea was to find respite care for a couple of months, to give my wife some time off. Not that I was very keen on the idea as far as I myself was concerned. But I felt it was the only solution, though adamant that this was not going to be a 'test drive' in preparation for a permanent solution away from home, but just a short-term 'holiday', to allow my wife to recharge her batteries.

In the process, however, we couldn't find a suitable place that would either have taken me on a short-term basis, or within an acceptable distance for my wife to visit.

Temporary alternative solution

Luckily at that point, my in-laws stepped in. When they became aware of our dilemma, they offered me to stay with them for the summer. Granted, they live around 150 miles away, but we had lived with them before, about 20 years earlier, so they feel very close to me.

Some arrangements needed to be made – such as renting a medical bed or putting in ramps –, but they seemed very eager to help out. And it gave my wife the opportunity to visit them as well as me at most weekends.

After about two months, I returned home, and we resumed our regular routine, with my wife having recovered from the stress and fatigue she had been suffering from. Any idea of a care home had, at this point, been pushed far away. That was in 2016.

Getting more difficult

At the beginning of summer last year, when my wife again approached a burn-out state, and we knew something needed to be done, we had another talk with my in-laws, and soon enough we agreed that I would stay with them again for a couple of months.

But my MS hadn't stood still in the meantime. One year on, I needed more care. Earlier in the year I had undergone an ileostomy to take care of severe bowel problems I had been having, and the bag needed regular emptying and replacing. So my wife stayed with us for a week to train her mother on the new caregiver tasks.

After that, we entered a similar routine as the year before, which worked really well. But because there was no ceiling lift to transfer me from bed to wheelchair and back, they had to lift me each time. With my in-laws being almost 75 and 80 respectively at the time, and having ailments of their own, this was beginning to be a problem.

And towards the end of summer, when the time for my return approached, it also became apparent that I now needed regular care also during the day, which my wife would not be able to provide because of her job. Finding an external carer proved to be more difficult than anticipated and forced me to stay at my in-laws for one month longer than planned.

Difficult decisions ahead

Fast forward to 2018, and I have now been staying with my in-laws again for the last 2 months. But it has now become apparent that this would be the last time. In the meantime my father-in-law had developed a serious heart condition, which required triple-bypass surgery a few months ago. And while he has been recovering well, it's clear that he cannot do as much as before – such as lifting me. So that job now falls to my mother-in-law, who is still physically fitter and younger than him. But it's getting harder for her, too.

We are now again approaching the time for my return home in September, and sure enough, the question of whether it might be time to consider a care home has surfaced again.

Well aware of just how much my MS has progressed only in the last couple of years, I realise that I cannot just dismiss the idea as easily as last time anymore. My wife seems to think it's still too early (and she probably would think that, now that she feels refreshed after almost three months of not having to look after me). But what will we do next spring or summer, when she again is exhausted from the daily routine and needs a break, but my in-laws' house is no longer an option?

Wrestling with myself and my conscience

Do I want to go? Of course not!

Only just last month I turned 50, and I cannot imagine being confined to a care facility, away from my wife, fully dependent on nurses for my daily care. Only 50, for Chrissake! Likely to be surrounded by people in their 80s and 90s. What kind of a life would this be?

But at the same time, I'm asking myself what kind of a life my wife is having now. Spending two hours each morning getting me up, washing me, dressing me, helping me with the food. Rushing to work, while a carer comes to the house 3 times a day, 30 minutes at a time, to take care of my basic needs. Then rushing back home, taking care of the household and of me and sinking into bed totally exhausted at the end of the day, but then having to get up a couple of times during the night to turn me over or to change my ileostomy bag. And only for the same routine to start again the following day.

This disease is not fair. Not on those afflicted and not on their loved ones. It's not fair on anyone. Nobody deserves a life like this!

But while there is absolutely nothing I can do about my own condition, which is likely to only worsen further in the coming years, I can give my wife a better quality of life. It absolutely breaks my heart to think that after almost 25 years of marriage, we may have to live apart permanently, and all we will have left together will be short visits or perhaps some outings.

However, I feel that I owe it to her. Then again, it just seems way too early. It's a decision that will be irreversible. Once we have gone down that road, there will be no way back! And that scares me more than anything else.

What if we cannot manage to live apart from each other? If we miss each other so much that it breaks our hearts? I cannot just say, hey, let's just move back home and try again. It will be permanent. And that word is scaring me to death.

Should we try to get at least a few more years before deciding to do the inevitable? Should we try harder to find other temporary alternatives?

I'm definitely not ready for a care home. The mere thought of it totally freaks me out.

I don't know what to do. I'm torn over this, and my mind is going crazy.

Mind you, I'm not expecting anyone to present me with the perfect solution, because I think there isn't. But I would certainly value others' opinion, especially those perhaps in similar situations, with advanced MS, and possibly battling with the same questions.

Thanks for listening and sorry for being so wordy.

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