Over the last six weeks, mum and I have been going back and forth to the doctor’s surgery. Mum’s complaints included urine infections, a sty, fungal skin infections and suspected thrush.

All-Consuming Physical Discomfort

When mum has any physical symptoms, they are all-consuming. With dementia, as you lose the ability to store information, you become increasingly aware of sensations and feelings. Mum simply couldn’t be distracted from the itching, the stinging, the pain and a feeling of needing to go to the toilet constantly. There were also problems with bowel and urinary continence. She kept telling me about her symptoms and repeatedly asked to see a doctor. I responded as if she had asked for the first time, telling her what the doctor said, what treatment she was on, and so on. She was completely miserable.

Caring Takes its Toll

While mum needed more care, I needed more support. But the opposite happened: she had to come home early from the day centre and Saturday club, or skip them altogether. Sometimes she wasn’t up to going out with carers. Twice my caring shift lasted 48 hours, from 10pm on Saturday to 10pm on Monday, with just a two-hour break from a paid carer on Monday mornings.

Caring for mum means getting up frequently through the night, actively engaging her throughout the day, being sensitive to her moods, and responding calmly and creatively whenever she gets anxious or down. Mum has been getting up a lot more frequently through the night over the last six weeks and I’ve been feeling the strain.

Physical Complaints Better – Regular Anxieties Worse

Things are better now. Mum has recovered from all her ailments. However, it seems her regular anxieties have come back in force. Most days there is at least one occasion, sometimes several, where she becomes dominated by anxiety, and which can last over an hour.

On Sunday night mum became very uncomfortable about staying in the house. She didn’t recognise her bedroom, or for that matter any of the rooms in her home. She thought the house belonged to Colonel Llewelyn, the man her father worked for six decades earlier, and was worried he might return.

Mum looking up at the trees in Bryngarw Country Park yesterday.

This was new, and as ever I struggled to see things from mum’s perspective. I told her she owned the house. Then she was worried that she was inconveniencing her aunts by staying there, that they would have nowhere to go. I thought she would be reassured to know that her aunts were still at New Cottages (where they lived when they were alive) and this was her house. It didn’t work. She was clearly very worried.

Only after mum eventually settled, long past my bedtime, did I reflect on where mum was coming from. She didn’t recognise the house so she needed an explanation about why we were staying here, and reassurance that it was OK. Instead of insisting it was her house, perhaps I should have said, ‘The aunts are at New Cottages, and they are happy for us to stay here tonight!’

Husband Out Gambling

On Tuesday night mum asked where Haydn (her late husband) was. I said he was out gambling; the only convincing explanation I could think of as to why he was out so late. This opened old wounds and brought back bad memories from the time after they were first married. Now she was anxious and dejected.

Wanting to Go Home

Another evening, I was unable to reassure mum when she wanted to go home. It was bedtime and she was sure her parents were waiting for her. This happens often and having tried many different responses and approaches, I still don’t have a successful strategy to deal with it. I sent a quick tweet in desperation asking: ‘What do I say?’

The responses included kind words of support and concrete suggestions like:

“They have just phoned to say they have had a burst pipe and the house is full of water, can she stay with you tonight?”

@bikerwise a full-time care partner for her husband.

“The hardest thing when caring at home is PLWD [person living with dementia] wants to go home (ie that place where everything makes sense). If she’s agitated, distraction may not work until she’s in wellbeing. Is there anything she can help you with in meantime? Being needed is a rare treat in dementia.”

@Understandingdm – Understanding Dementia trains professional carers in dementia care.

“Try modifying some of the ideas laid out here in this blog post. Presenting two choices with the idea that she will chose the ‘lesser of the two evils’ – the one that you desire. This is definitely a hard one. Keep being creative.”

@theDAWNmethod – the DAWN Method helps families care for loved ones with dementia at home.

Advice for Myself

In the cold light of day, I have some advice for myself. Stop panicking for a minute. Really listen to and understand what is behind mum’s agitation. Remembering advice from Penny Garner, of Contented Dementia, I plan to spend more time noting mum’s questions, trying out different responses and evaluating what works.

I also need to get better at joining mum in her reality.

8 thoughts on “Caring in the Face of Physical Distress and Overwhelming Anxieties

  1. I can see your vicious circles here Julia and Mum. Just a few questions , are you winning ? (sorry but I’m ever the MH nurse) Do you have a district nurse or community nurse input? A plan ? Is the plan up to date to match the health needs you have listed? Do you have a intervention plan you feel trust in ? and in charge of ? Can you access community support from your local service?

    If you need a helping hand please ring me ok for Monday. I have children for a few days?
    Xx Lorraine

    Liked by 1 person

    1. Hi Lorraine, I must be doing something wrong as I have responded to this message three times and my response never appears. Perhaps gremlins! I do have a community nurse, and will follow up with her. She came out to meet me shortly after mum came home. No plan or intervention plan as far as I know apart from my own. Would love to chat and find out what I should expect if you are sure you have time. I could manage Thursday or Friday this week, if that’s any good for you. J x

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    1. Thank you for your confidence. I hope so. My mother experiences such pain and I’m sure it should be possible to help calm her and make her feel OK. I’m definitely not a natural at this. I get prickly which doesn’t help.

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  2. Wow. Amazing.
    Within this, I would respectfully venture the following comments.
    1. You are right. The key is being calm, patient and inventive. As your point with the house shows, white lies are better than the truth most times in moments of confusion. There will be a loop alot of the times so you can either hone in on one that works or repeat the one which is working.
    2. As per point 1, you need support as much as you can and as many breaks as you can get. In the early years I fed my mum but later used that as an excuse to get an hour break whilst the carer fed my mum. It was something which kept her occupied. I tried to be there only when someone wasn’t. I also learnt that sometimes there isn’t a point to being in the room during a meltdown situation and not to feel guilty. Being inventive in order to get micro breaks is a good idea.
    3. Am sure you know this already. But any routine which works and which she accepts is s godsend. I found non-verbal routine (I was the foot masseur-and movie time and short walks using the wheel chair) to be much less tiring.
    4. Don’t beat yourself up. Don’t feal guilty. As everyone attests, you are doing an amazing job, more than 99.9 percent of your peers. It is a shite disease which affects entire families. I am unsure that you have accepted that most times when your mother experiences pain or fear there is nothing you can do.

    Liked by 1 person

    1. Wow! As ever your comprehensive knowledge on this topic, from your years of caring for your mother, shows through. Yes, I completely agree about breaks. I’m getting sufficient as long as they all come off. Unfortunately mum is showing strong resistance to go to and being in day centres and her Saturday club. Sometimes I’m called early or mum refuses to go. My mother fears dementia, is conscious something is ‘wrong with her brain’, says she’s going ‘delally tat’ and I think that possibly being with other people who have dementia, confirms her worst fears. Yes, noting what works and using it continually. Hope you, your mum, and are and your family are well. Love J x

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