Sunday, May 13, 2012

I’ve Decided To Bring Him Home

On Thursday morning there was a special morning tea at the nursing home because the CEO of the Company was visiting. We were seated next to another published author, a lady who had written a memoir of her youth in India — interesting to me because my Mum grew up there. She ended up lending me a copy of her book. My Dear Husband wasn’t interested; just begged, ‘You’ve got to get me out of here!’ I told him the Manager had promised me he’d soon be moving into his own room, where he could have a TV and his laptop.

‘I don’t want my own room,’ he said. I was surprised. 

‘You want to stay in this one?’ (a shared room).

‘I don’t want to be here at all,’ he growled.

He told me of trying to catch a taxi home, ‘but no bugger would let me’.

On Thursday afternoon I went to the Housing Department and told them the situation, and got yet more forms to fill in. A friend drove me; I was afraid of crying too much to be able to drive. She made cheerful conversation, just what I needed, and I didn’t cry, except briefly when talking to the lady from the Department. Then I came home and sobbed my heart out all night. ‘Am I making the greatest mistake of my life?’ I asked on facebook. Friends reassured me I wasn’t.

One friend privately asked me tough questions, to make sure I wasn’t being self-destructive:

‘Do you really think you can care for him? How will his life improve? How long before you resent giving up everything for him?’ I answered:

‘He would be with me and the cats, especially in bed at night. He would have access to the material for his autobiography, and could continue to play with the idea of writing it. He could phone his kids and old friends. He would feel less disempowered than he does now. He would not be surrounded by a whole lot of people with dementia far more advanced than his own, with whom he can't converse. Instead he would have one-on-one in-home respite carers with interesting conversation about books and movies.

Maybe he's more important to me than the other things! I could still write, blog, network, run WordsFlow, read, exercise, watch TV and DVDs, look after my garden, see my friends.’

She said in that case I should go for it. I was still torn and undecided. After all, when everyone tells you that you’re acting for the best....

Yesterday (Friday) I went to the writers’ group. I am the facilitator, so I thought I’d better get back to it after missing the first two of the term. Everyone was affectionate and welcoming, and we had a pleasant afternoon. 

Then I went and had tea with DH at the nursing home. I knew my friends Al and Mo had visited him that morning. I’d asked Mo, a former social worker and palliative care volunteer, to see what she thought about me taking him back home. He told me he’d had a good visit with them, and added, 

‘Mo said she can’t see any reason why I couldn’t go home.’

‘For a visit or for good?’ I asked.

‘For good.’

I knew this was very likely not what she’d said. (I was correct, as I found out later; she meant visits). Nevertheless I felt huge relief and joy. I told him enthusiastically that I’d organise it right away. He stared at me.

‘At last you agree with me!’

I gave him a hug and assured him there was nothing I’d wanted more. Then I went to find the Admissions Officer but she’d left for the weekend; so had the Manager. The Assistant Manager was still there, and the first thing she asked was, ‘But will you be able to manage?’ 

‘I’ll make certain of it!’ I replied.

‘Well,’ she said, ‘It’s your decision. I’m just writing an email to the Manager now, so I’ll add this. You’ll need to contact the Admissions Officer first thing Monday morning and she’ll sort out all the details with you.’ 

I hope I’m not making her sound unsympathetic. Far from that, she was concerned and understanding. She urged me to take advantage of the temporary respite opportunities and I said I would. Then I went back to him, jubilant. Of course he wanted to leave immediately, so I explained that there were a few things to organise and it’d have to be Monday. (I had already made arrangements to take him home for a lunch visit on Monday.) I felt a lot better than I had the previous night.

I announced it on facebook, and all the people who had previously said I was doing the right thing and had no choice now cheered and applauded! (I understand that they were committed to supporting me whichever way I went.)

This morning when I went to see him, he was still in bed in his pyjamas, and had nodded off over a book. He woke a few minutes later when morning tea arrived, saw me and said, 

‘Oh there you are’.

I was surprised to find him somewhat like a lost child mentally — a very soft, sweet child. He told me he had been in another place that was really awful. He sought for words to describe it, but in the end just said, ‘I cant explain’. 

He said, ‘I went to your place but I couldn’t find you. There was a big room with a bed and you weren’t there.’ [The nurses have mentioned that he goes looking for me sometimes.] He asked me very humbly if he could come home for a visit. That wrung my heart. I said he could, but didn’t immediately remind him he’d be coming home to live.

I almost had second thoughts about taking him home for keeps, seeing him so deep in dementia. It seemed as if he might ‘settle’, as they call it, after all. And I became very aware of how much attention he needs now. In the recent past I could go out for a 20-minute walk, or duck down by car to the local general store. Not any more.

‘Where do you go at night?’ he asked. I told him that I go to our home, and asked playfully, ‘Where do you go?’

He looked down at the bed. ‘I guess I’m pretty much here.’ 

‘Where would you like to be? I asked.

‘With you.’

That was enough for me. I promised he would be, and soon.

He brightened up and agreed to go and have a shower, after first saying he didn’t feel like one. When the lovely young South Korean nurse brought him back and started straightening his bed, he began making conversation with her.

I decided to stay for lunch there. It was a staff member's birthday, and one of the others encouraged us all to sing Happy Birthday. After it was over, DH chimed in clearly with, ‘Hip, hip! ...’ and we all cheered.

Then I came home and made phone calls. The lady who administered the EACH package I had (domestic help and in-home respite) answered her mobile, said she’d already discharged us as requested, but thought maybe she could help.‘Leave it with me!’ she said.

Our handyman mate Flip, who used to be an aged care nurse, came round to help me decide what’s needed to make the house safer. I told him I’ll hire him in addition to the EACH package; if he was here two hours a day every day of the week, it’d still be cheaper than the nursing home fees — even their concessional fees. In fact, I won’t need him anywhere near as often as that. He can come in and give DH a shower and shave, and that will give me the maximum hours of in-home respite from the EACH package. The package could include that service too, but it would encroach into the other time.

I am going to have to lock all the doors, just as they do at the nursing home, for his safety. This means I’ll need to install a cat door. I’ll have to ask the Housing Department for permission, but I don’t think it’ll be a problem.

Flip, in his handyman capacity, will build a ramp that will fit over the back steps. As it won’t be a structural alteration, we won’t need to ask permission. And on Monday I’ll go to the palliative care storage sheds in search of a light, folding wheelchair for occasions when the wheely walker isn’t enough. 

It is clear to me that I will not be able to write, read, network etc, as easily as all that. He MUST be my main focus. I will have to drop some activities and rearrange my life. Well, he's worth it!

Tomorrow is Mother’s Day. The nursing home is having a special morning tea to which I’m invited. The next day — home!


  1. I admire your decision; I hope it works out the best it can and you are both safe.


    1. I am scared too, but I know not to try and lift him if he should fall. As the professionals keep telling me, he could fall anywhere; the only advantage of doing it in the nursing home is that there would be a lot more people around to help. But the local ambulance officers are very good if it comes to that.

  2. There's a saying which I love which resonates for me from what you are describing.
    'True faith is not assurance, but the readiness to go forward experimentally, without assurance. It is a sensitivity to things not yet known.'
    Warmest wishes to you both in your next steps together. Catrin

    1. Wow, great quote. Thank you. Going forward experimentally certainly sums it up!

  3. Hoping everything works out for both of you. It can't be an easy decision but it sounds like you made it very mindfully.

    Thanks for sharing on 6WS.

  4. Yes, I missed seeing this blog was around.

    Glad you can have him close to you for longer. It's good that you can adapt.

    The nurses and staff have been thru this sort of thing hundreds of times.

    It is good he's good humoured. With Alzheimer's, as my neighbour's wife, my father, my grandmother's school mate sometimes personality unstitches gradually and by bursts.

    Thinking of you and your journey (hugs)

  5. Yes, the geriatrician always asks, 'How is his mood?' I can only say that, considering he is often in extreme physical pain, he is extraordinarily brave and patient.


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