Week Fifteen

Simon has gone to Uncle Peter’s funeral. I would have liked to be with him to say Goodbye. I should have liked to have been there in November too, for Peter’s wife’s funeral. This is one of the challenges of having Mammy here – that we can’t do things as a family, because Mum’s needs are so specific and respite needs to be booked long in advance.

When I went to wake her this morning she was already awake, half undressed, quilt piled up behind her, crying at the edge of the bed. It is a pitifully sad sight.

“Whatever is the matter?” I asked.

“I didn’t know where you were!” she snivelled.

“I was asleep in the next bedroom. I’m here now. Come and get dressed before you freeze.” I tried to reassure her, but I was simultaneously irritated by her and upset for her. I don’t feel that I have much more of myself to give, but she is needing ever more of me.

It is just after 2pm; the morning’s blue sky and strong smelling ultra-violet have covered over with dark grey and a snow gale is blowing. The Day-Centre has just made an early delivery of a very sorry looking Avril. They said she was very pale and unresponsive and that she wouldn’t eat her lunch, but just sat miserably in the corner.

She thought she ‘was too fat, so didn’t want any dinner…but it didn’t work. I’m just being mardy’, she confessed.

She doesn’t ‘want to be anywhere’ and doesn’t know what she wants.

She’s drinking a cuppa and gazing into the snow rushing horizontally past the window, but she can’t see it…

***

Mum’s dementia doctor rang this morning to offer Mum an appointment for tomorrow morning at 9am. We will take it. I just hope Conor and the traffic will allow us to make it on time.

Simon has devised an easier way to get Mum to take her evening tablets: he mixes them up in a Weetabix and spoon-feeds it quite rapidly into her. She still finds the tablets in the mixture, but does get them down quite with much less anxiety, so it’s a step forward for now. I don’t know what the ‘Respite’ home will do with them next week.

***

This morning was blessed. Conor was ready on time and, despite the traffic, we arrived at the hospital with 5 minutes to spare. Being the doctor’s first patients of the day meant that we had no waiting either. The dementia doctor was supportive and very attentive to Mammy. She is happy to see us again in 9 months. Investigations into the dementia are not deemed necessary. Again she stressed that she is more concerned with how well we are coping with the day-to-day. Mammy cried twice during the meeting. The doctor says that the steroids can make one weepy and down. She also said that we should persevere with the ‘Tegretol’. Apparently the ‘frontal lobe type’ dementia is otherwise known as ‘Picks’ dementia, so I will read up on that later.

No matter what the cause of Mum’s condition is, there is no medication or treatment that can help anyway. It feels strange and a little disappointing that after a year of investigations and appointments we have come to an accepted state of ‘no conclusions’.

Anyway, of all the descriptions and information given on the website, I do think that Alzheimer’s is the ‘best-fit’ for Mum’s symptoms.

[See Appendix 1 included at the end of this week’s piece for more interesting and official information]

It may be academic, but such things do affect prognosis for Mum and her daughters.

What happens next?

Part 2 Making a decision

Chapter 11

I became very anxious taking Mum into Broad Glade for respite. I was to pick Ana up later, as she offered to stay with the boys for the half-term week and allow Simon and I to have Thursday to Saturday away together.

Conor accompanied us and he felt Mum’s sadness and disappointment. She really hates me leaving her, despite often enjoying herself when she’s there. I distracted Conor from his grief afterwards, by booking some induction sessions at the gym before going to fetch Ana from the station.

***

Our Social Worker phoned on Monday morning to say that Broad Glade now have a permanent room available for Mum, if we should want it?

Do we?

We have to take it. My ears were humming and I felt like my head would explode.

Yes, please.

How do I tell Mammy? Will she ever forgive me?

The Social Worker says I must tell Mum before I go away, so I’ll have to go with her on Wednesday morning.

I mused silently until after the dentist and then told Ana and the boys. Conor was very understanding and feels that he has done his bit for Nana too. And she will be close enough to visit whenever we want to.

For the next two days my head was like a Ping-Pong. Relief, guilt, relief; prayer, fear, prayer; emotion, reason, emotion. I felt like she had died. Like she was gone forever.

On Wednesday I felt sick. The boys made sure I kept busy. I dropped them with Ana at their first Gym induction, and went over to Broad Glade. The Social Worker was there waiting for me and as soon as I saw her, the tears started to well up. It would perhaps have helped if I had cried earlier, but I hadn’t.

We had a chat and then went to find Mammy. She looked so beautiful. She had had her hair done and was wearing a pretty dress. She was eyeing us suspiciously as we led her back into her room.

The Social Worker began the conversation as discussed and reminded Mum how, when she first came down to Nottingham, we were planning to find her a place of her own, where she could be close to us. The Social Worker said how Mum now needs help with washing, dressing and making cups of tea etc and Mum looked surprised –

“No, I can do things like that” she claimed.

We told her that they now had a place available for her there, where she would be able to stay and be close by.

I could not have imagined a better response – she smiled with delight and said,

“That’s great! So we will be close again at last?”

As we talked, I realised that she had forgotten that she had spent the last 14 months living in my house. I could not have engineered that response in all my prayers and dreams. I felt so grateful. I explained to Mum that I would help her move into her new room and bring some more clothes and pictures. She was all smiles and affirmations. I took her through to lunch and left to collect the boys with such a spring in my step and praise on my lips.

I had no trouble packing that evening and was almost sad to be leaving the boys behind. But they are in safe hands.

Appendix 1

Early, Middle and late stages of Alzheimer’s (page 10 of Alzheimer’s At your Fingertips)

Early Symptoms: “Because the onset of the disease is gradual, it is difficult to identify exactly when it begins. The person may:

*show difficulties with language;

*experience significant memory loss – having particular problems with short-term memory;

*be disorientated in time;

*become lost in familiar places;

*display difficulty in making decisions;

*lack initiative and motivation;

*show signs of depression and aggression;

*show a loss of interest in hobbies and activities.

Middle Symptoms: “As the disease progresses, problems become more evident and restricting. The person with Alzheimer’s disease has difficulty with day-to-day living, and:

*may become very forgetful – especially of recent events and people’s names;

*can no longer manage to live alone without problems;

*is unable to cook, clean or shop;

*may become extremely dependent;needs assistance with personal hygiene, including visiting the toilet, bathing and washing;

*needs help with dressing;

*has increased difficulty with speech;

*wanders and sometimes gets lost;

*shows various behavioural abnormalities, such as unprovoked aggression or constantly following the carer around the house;

*may experience hallucinations.

Late Symptoms:This stage is one of total dependence and inactivity. Memory disturbances are very serious and the physical side of the disease becomes more obvious. The person may:

*have difficulty eating;

*not recognise relatives, friends and familiar objects;

*have difficulty understanding and interpreting events;

*be unable to find his or her way around in the home;

*have difficulty walking;

*suffer bladder and bowel incontinence;

*display inappropriate behaviour in public;

  • be confined to a wheelchair or bed.

Other useful information about Alzheimer’s:

Signs and symptoms

Alzheimer’s disease — a progressive, degenerative brain disease — causes more than simple forgetfulness. It may start with slight memory loss and confusion, but it eventually leads to irreversible mental impairment that destroys a person’s ability to remember, reason, learn and imagine.

Most people with Alzheimer’s share certain signs and symptoms of the disease. These may include:

Increasing and persistent forgetfulness. At its onset, Alzheimer’s disease is marked by periods of forgetfulness, especially of recent events or simple directions. But what begins as mild forgetfulness persists and worsens. People with Alzheimer’s may repeat things and forget conversations or appointments. They routinely misplace things, often putting them in illogical locations. They frequently forget names, and eventually, they may forget the names of family members and everyday objects.

Difficulties with abstract thinking. People with Alzheimer’s may initially have trouble balancing their checkbook, a problem that progresses to trouble recognizing and dealing with numbers.

Difficulty finding the right word. It may be a challenge for those with Alzheimer’s to find the right words to express thoughts or even follow conversations. Eventually, reading and writing also are affected.

Disorientation. People with Alzheimer’s often lose their sense of time and dates, and may find themselves lost in familiar surroundings.

Loss of judgment. Solving everyday problems, such as knowing what to do if food on the stove is burning, becomes increasingly difficult, eventually impossible. Alzheimer’s is characterized by greater difficulty in doing things that require planning, decision making and judgment.

Difficulty performing familiar tasks. Once-routine tasks that require sequential steps, such as cooking, become a struggle as the disease progresses. Eventually, people with advanced Alzheimer’s may forget how to do even the most basic things.

Personality changes. People with Alzheimer’s may exhibit mood swings. They may express distrust in others, show increased stubbornness and withdraw socially. Early on, this may be a response to the frustration they feel as they notice uncontrollable changes in their memory. Depression often coexists with Alzheimer’s disease. Restlessness also is a common sign. As the disease progresses, people with Alzheimer’s may become anxious or aggressive and behave inappropriately.

Because early Alzheimer’s symptoms progress slowly, diagnosis is often delayed. People developing the condition may be frighteningly aware of their problems — but careful to keep them hidden, refusing to see a doctor. As a result, even their families may fail to see what’s going on. When the signs and symptoms are too obvious to miss, those closest to the person often realize that similar — but less severe — difficulties have been present for years.

The disease’s course varies from person to person. Eight years is the average length of time from diagnosis of Alzheimer’s to death. Survival begins to decline three years after diagnosis, but some people live more than a decade with the disease.

Treatment

There is currently no medication that can cure the disease or slow its progression. Treatment therefore focuses on helping people manage their symptoms, and treating problems such as mood changes that may contribute to the difficulties that people experience.

Research in dementia takes place all over the world and more and more is becoming known about each of the different types of dementia. As our knowledge continues to increase, the hope is that we will be able to design treatments that will help combat the symptoms and signs of dementia, and eventually hopefully cure it.

From ‘Dementia’ by Dr Jonathan Rohrer, Dementia Research Centre