It was a shock when Bruce had his first heart attack at 42.
I was a registered nurse and had never seen any symptoms.
But genetically Bruce was a timebomb, with both parents dying young of coronary artery disease.
All his family had smoked heavily, though Bruce had given up smoking years earlier.
He had been in the Air Force for over 26 years and always liked to be fit. He passed his annual fitness test easily.
Thirty years ago the health system didn't seem to be under the strain it is now, and Bruce almost immediately underwent coronary bypass surgery.
He recovered well, and returned to work and sport.
Then one morning when he was 54, he got up early to run on his treadmill.
After a few minutes I could hear that the treadmill sounded different, and called out to Bruce, but he didn't respond.
I found him slumped, unconscious, on the machine, which was valiantly trying to keep him running!
The next few minutes are a blur. I remember dragging him off the machine and starting CPR until his breathing returned, then calling the ambulance.
I knew Bruce had suffered a stroke, as there was a facial droop, and no movement on his left side.
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He spent several months in hospital and rehabilitated quite well.
His mobility returned to the extent that he could walk safely, though he did not regain movement in his left arm.
When he returned home, though, there was a tremendous change in our lives.
We had lost Bruce's good income, and he had to be taught to manage alone at home, as I was now the main wage earner.
The support from our two children, who were young adults, was fantastic.
Both had spent university holidays working at a private medical hospital, and had enjoyed the residents.
I had also managed a similar hospital, so we were all very used to people with needs like Bruce's.
My relationship with Bruce had always been based on humour, and as a family we had laughed a lot. So it wasn't all gloom and despondency now.
We still had lots of laughs while we coped with all the changes.
But there were dark days, too, when we realised this was going to be our life, and that we had ‘lost' a husband and a father.
Over the years Bruce's vascular disease progressed and he needed yet another coronary bypass.
I noticed he was starting to do things like vacuum the lounge without turning the machine on, or locking the house securely while he was inside and leaving it wide open if he went out.
His perception of events changed, and he often misinterpreted what was going on.
Bruce would get very irritated when I questioned what he was saying.
At times he would even look like he wanted to hit me, shaking his closed fist at me, but I was never frightened of him.
I'd dealt with too many challenging patients in the past.
It is hard being a nurse and knowing what dementia does to people. At the same time, knowing that this person was my husband and shouldn't be doing the things my patients did, I found it hard to see that
Bruce's behaviour was caused by loss of function rather than forgetting things he didn't want to remember.
It was becoming obvious that Bruce could no longer be alone at home.
He had a medical alarm which had a two way communication system, and I was regularly being called because he had fallen or couldn't get his jersey or his shoes on or off.
I was in the fortunate position of managing a hospital that specialised in dementia, so I knew how to access help.
Initially I brought Bruce to work with me so he could attend the hospital's day care programme, which was funded by the District Health Board. I was able to relax at work and not worry constantly about Bruce.
Over time though Bruce coped less well. He became paranoid and more confused.
I came to realise that we could not go on as we were. I wasn't getting enough sleep, Bruce was starting to get up a lot in the night, and if he wasn't, I was still listening out for him.
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He had started to wet the bed occasionally, and to fall over regularly.
Constantly having to plan my days around Bruce, trying to go out and shop in less than an hour in case he fell, missing out on seeing friends, and the constant repetitive answering of questions had led to my being short-tempered with Bruce all the time.
Then Bruce got a chest infection and I admitted him to the hospital.
The thought of bringing him home again filled me with dread. I knew the time had come for it to be permanent.
Making this decision, and completing all of the necessary paperwork, was a hurdle, but knowing Bruce was in a safe environment, receiving appropriate care, was such a relief.
I have often told relatives not to feel guilty about placing a loved one in care. You must be responsible and look after yourself too. It's destructive to be constantly in stress.
Recognising that Bruce had got to the stage where he was dependent for all his daily cares, coupled with the potential to fall and his increasing incontinence, means that I don't feel guilty.
I have also often told relatives not to be ashamed of the things their loved one gets up to while in care.
We professionals are used to it and can cope, but when it's your own loved one it's easier said than done!
But with time I am feeling better about it all.
Many years ago I felt that the spouses of people in care needed support. They often have to deal with very stressful conditions at home before admitting someone to care.
Others have a spouse admitted with very little warning after a stroke or some other catastrophe, and are suddenly coping alone.
Some women have never had to drive or manage finances. Some husbands have never run a house, or shopped, or cooked.
So Guardian at BeachHaven has set up a Spouse Support Group (I never imagined that I would be eligible to attend as a spouse!).
The aim was to get people together who were all in the same boat so they could socialise, meet and talk while visiting, and perhaps build friendships based on shared understanding of what each was going through.
We provide an afternoon tea and often have a speaker for part of the meeting.
We've had the Fire Service, which provided everyone with a fire alarm (and even went to homes and installed them).
The Community Constable talked about how to stay safe, a specialist dementia nurse explained the different types of dementia and why sufferers behave as they do, and we have had many other interesting speakers attend our meetings.
The groups have been very successful and meetings are much enjoyed by all who attend.
It is lovely to hear spouses swap recipes and share the funny aspects of their lives, learning and laughing together!
Signs that it may be time for long term care
- Disturbed nights
- Aggression towards you, or any violence
- Resisting behaviour - refusing to take medications, showering, dressing, eating etc
- Wandering unsafely from home (not being able to find their way home)
- Decreased mobility, falls, finding it difficult to manage physically
- Managing incontinence at home becomes a challenge
- Unsafe at home (fiddling with electrical equipment, running taps etc)
- When you know you are stressed, becoming impatient and irritated, feeling trapped, not being able to leave the house - social isolation, hard to have visitors etc
How you may feel after the move
- Guilty, because you can't care for your spouse any longer, or when you leave after visiting, or your reception when you arrive to visit, or not visiting as frequently as you ‘should'
- Anxious over the care he/she may be getting plus
- Managing affairs
- Financial concerns
- Being alone/scared at night
- Your own long term future - Embarrassed at others seeing behaviours you had concealed at home
- Transport difficulties/public transport/having to rely on others/distance/time
- Relieved that your time as a hands-on carer has come to an end
- Less stressed, more relaxed
- Improved sleep
- Keen to meet others in the same situation who understand how you feel
Talking to others can help
- Join a local support network like Alzheimers, Parkinson's, Stroke Foundation, etc (many non-
profits have their own local support groups and Field Officers) - Ask if your care facility hosts a spouse support group or start one yourself - the facility may
help by providing a room, refreshments, promotion to other relatives etc. To learn more
about Guardian at BeachHaven's group phone Gina on (09) 985 9712
(email gina.langlands@guardianhealthcare.co.nz) - Take the time to talk to other visiting spouses
- Get to know the staff who care for your spouse
- Remember that you need to get yourself ‘back' and make the effort to re-establish friendships that may have lapsed while you have been isolated ... make time just for you!