I wrote in March 2022 “As yet my wife’s dementia is undiagnosed but the future looks bleak: vehement denial, anxiety-inducing delusions, no close friends, total reliance on me (often completely unacknowledged), a poor opinion of medics and fearful of medication. The only positive I can see is that the inevitable anguish and extreme stress she will experience as time progresses will be mitigated by the disease – she will forget rather than dwell on traumatic events.”
Situation at July 2022
Over the last 2 weeks, my wife first developed a heavy cold which seems to have developed into a chest infection – fits of coughing with phlegm.
Simultaneously her dementia symptoms have worsened with more confusion and disorientation. She has had occasional high temperature, persistent tiredness, frequent anxiety related palpitations (heart rate <=120 p/m) at any time of day or night and significant loss of appetite (3 kilos weight loss in 4 weeks). She is now a little stooped, less steady on her feet and walking slowly.
Visit to the GP on July 4th resulted in additional antibiotics, dietary supplements (Ensure+) and referral for chest X-ray.
October 2022
A lot has happened in the last 3 months. Chest infection cleared up, appetite returned and weight almost back to normal. Dr from Memory Clinic assessed her memory skills (non-existent) and organised ECG and Brain Scan – I told her it was a routine X-Ray. GP prescribed Sertraline and Lorazepam. My wife is slightly more calm as a result of the medication and I’m becoming better at dealing with her mood swings, but she steadfastly remains in denial. However, her general awareness of events has diminished further, making her more compliant with medication and less persistent about driving.
Social Services have helped with carer’s assessment for me and provided vouchers for care visits. I’m relieved that we’re now “in the system” with support on offer – challenge for me is to navigate the system in the best interests of my wife and myself. I’ve been told multiple times to make sure I look after myself, create time for myself, and be “more selfish”. This is easier said than done.
Main stressful issues for me now are how to fill her day and how to deal with the daily sundowning which generally begins in late afternoon. Local walks used to be a favourite activity but she now walks more slowly and doesn’t enjoy walks as much now. And places we’ve happily visited for decades are less attractive for her e.g NT properties. So trips to the city in the car are her preferred option– shopping and lunches at nice restaurants.
The sundowning is invariably about going home to see her “parents”, an idea she becomes very anxious about. I’ve never been able to establish who these parents are – she often acknowledges that they are not her real parents but has no idea of where exactly they live, their telephone number and even their names. Rather than challenge her (“How can we possibly find them if we don’t know their name, address and phone number?), I turn the focus on them (They’ve never contacted us, no phone calls and no Christmas cards...). This often works well, with agreement that we won’t bother to contact them. But with no STM there is a similar routine a few minutes later or the next day.
January 2023
In late October 22, systematically increasing dosages of memantine were prescribed and this has certainly had a stabilising effect. For some time now she has been readily accepting medication, memantine and sertraline daily and lorazapam when anxious and aspirin for headaches (which may be a side effect of memantine, although there were pre-memantine headaches). The confusion is more evident more often but sometimes more insight and acceptance of my observations rather than ‘stubbornly’ delusional. Generally she is very grateful for what I do for her – profuse thanks and affection expressed but can become difficult to deal with when sundowning – angry, anxious and occasionally shouting and abusive which may be sometimes worsened if I show exasperation...
Read yesterday that 42 percent of people can’t remember when they last laughed out loud. Cheered me up given that we laugh out loud many times each day – making her laugh is incredibly beneficial to both of us.
She is more accepting of visiting carers and typically pleased to see them as long as I dont tell her in advance – if I told her of a carer visiting she would react against it, becoming anxious and insisting she is happy on her own. The partner of a golfer friend is amazingly supportive, visiting once or twice per week and spending 3 hours with my wife while I play golf. The private carers take her out for walks and coffee, very helpful because she is unhappy staying in the house – which is why community-care vouchers for a sit-in service are not being used.
Such is my wife’s dependence, I cannot leave her alone – if I’m out of sight for 5 minutes she becomes distressed. In early Feb 23 she was not well enough to accompany me to a funeral, so I left a white-board message about where I was and when I’d be back. When I got home 2 hours later, she had been walking the neighbourhood for the entire time {the note would have been instantly forgotten when out of her sight} and was at this stage attempting to unlock her car with house keys. A reminder that it is not safe to leave her alone...
And it’s not safe for me to be inattentive for a moment when we’re out. Late January, she went to a department store toilet whilst I waited outside – a moment’s lapse of attention and she was gone. Two hours later police located her at a carpark at the other end of town – always used by her when she was driving. Note: She had left her handbag containing a GPS tracker at home....
It’s vital for me to acknowledge my wife’s dementia at all times and to remember that my memory, long and short, is intact and quite reliable. When she says we’re not married, it’s not her fault. When she wants desperately to go home and see her (departed) parents, brothers, aunties and uncles, it shows how devastating her memory loss is, how the last 50 years or so are a complete blank for her. A big problem is that I can’t just fill in the blanks for her, as she is beyond being convinced by facts and logic. Even if she accepts the unpalatable fact that her parents couldn’t possibly be still alive in 2023, she will have no memory of that ‘insight’ a short time later (seconds).
Wanting to go home to the family is a very powerful feeling she has. Dementia means that she’s often very confused, upset, tearful, angry, and scared of what’s happening to her, and the reaction to this nightmare of confusion is a yearning for home as it used to be, the home she used to return to regularly and enjoy the comfort and warmth of the family. Telling her however gently that this family home no longer exists is very upsetting for her. Once when I was questioned by her about her mother, and I eventually told her that she died more than 40 years ago, she angrily exclaimed, “Why didn’t anyone tell me!!” I then had to explain that she was the only family member with her mother when she died.
