Dear Aunty S

In about six months time I will commence caring for my Mom full time in our family home; she is in the middle stage of Alzheimer’s.
I found your blog via your Orchard website recently when I googled a pudding steamer and up popped your site with a Cherry Pudding recipe.
It was such a coincidence as I have been visiting many Alzheimer’s websites seeking safety and equipment information and the more I read, the more I am confused.
You sound very practical and as you cared for your Mom for such a long time, it is obvious that the systems you had in place worked.
A bedroom to accommodate her is being built on shortly so any advice when it comes to the design would be appreciated and a list of equipment and safety advice.
Really just anything that will make life easier for us all.
Money is not a problem as my siblings and I want the best of care for Mom.
In our State, the nearest High-Quality Aged Care Facility to place her in, is way out of our price range and after much consideration, we are glad that we have come to the decision of Home Care for our Mom.
I am sure any information you can provide will also be picked up by others needing practical advice from someone who has walked the talk.
Also would you mind writing a simple explanation as to what Alzheimer’s is, as I have a relative who can’t grasp what is happening to Mom.
Many thanks.

M. D.

 

Aunty S Responds:

I am very pleased you found me, as I am only too happy to assist.
And always remember I am only an email/phone call away.
I can’t say a car drive as you are not on my side of the equator!

Below are the changes you will need to make to your house in order to comfortably accommodate your Mom.

– She needs her own bedroom, and bathroom with a walk in shower.
– A partially covered deck or verandah (for the latter stages).

My Mother was never bedridden during the day as a lounge wheelchair, which could be adjusted for comfort, was used and the deck/verandah was her favourite spot.
The birds, the wind, the flower fragrances… it was so lovely to see her respond to such stimuli.

– A small sunroom with her own TV and stereo (this is more for the latter stage) or for when she wants some peace and quiet away from the family.

I have sent you a private email with basic designs of a bedroom, bathroom, sunroom and a deck (verandah).

Now, here is a list of equipment, clothes etc. that I recommend as it made my life easier when caring for my Mother.

– Shower wheelchair.

– A low bed with a really good soft mattress (comfort is everything).

– Electric bed with sides & Softform mattress (latter stage).

– Duvets (never blankets).

– A gorgeous bedspread or quilt (something she will admire).

– Seat alarm (this alerts you if she decides to get up from sitting and wander through the house).

– Pressure floor mat alarm (can be placed anywhere you don’t want her to go).

– Height adjusted lounge chair (easy to get in and out of).

– Her own plates and cups in a bright colour (this encourages her to eat and
drink).

– Sipper cups (will require them at some stage).

– Food blender (puree her food as she will eventually choke if given whole food).

– Wheelchair for when you take her shopping (she will feel like a queen and you won’t have to worry about her walking off).

– Soft wheelchair pad (to avoid pressure sores).

– Lounge wheelchair (for the latter stage so as not to have her bedridden during the day).

– Hoist to get her out of bed (latter stage).

– Soft merino clothes.

– Baggy pants.

– Merino socks.

– Pullover bras.

– Mirrors throughout the house so she is reminded what she looks like.

– Jewellery box with trinkets.

– Stuffed toys or toy.

– Good fitting shoes and slippers (no scuffs).

– A good podiatrist (foot care is vital).

– Denture cleaner.

– Soft soaps & shower gels (anything that smells nice to make her happy).

– Childproof your backyard with outside sensors so you know if she is trying to get out.

– Plant out brightly coloured flowers/shrubs in a garden area beside a well padded chair in a gazebo type structure.

– Adult diapers (latter stage)

– Pressure socks (latter stage)

– Funny DVD’s

– Music DVD’s (Daniel O’Donnell type of music worked for my mother)

– Magazines ( a huge pile) and a subscription to at least two new ones a week)

– Baby monitor (this gave me peace of mind at night)

When Mother arrived she was obsessed with attempting to fill the electric kettle and turning it on, and also switching on the stove/range.
I had to have eyes in the back of my head, until I changed the electric kettle to a model she had never seen before and the range to a European style which had knobs in the front not at the top.
Both of these were completely foreign to her and she was simply amazed at how nice they were so when visitors would arrive, she would exclaim, “Look at Sandra’s new stove/jug. I don’t know how to work them”.
She never once attempted to touch or turn on either new appliance; problem solved.
She wasn’t upset, just fascinated.

– Make her bedroom pretty and inviting.

– Have a collection of small teddies or dolls on her dressing table.

– Put pretty pictures and family photos on the wall.

– Ensure she has a deck where she can sit out of the sun; it must have sides to avoid falls.

– Roll up all mats/rugs and put them into storage.

– Carpet all areas if possible.

– Remove all coffee tables and bookracks.

– Remove all clutter from rooms, as she will find a way to fall over something!

– Don’t leave china ornaments or valuables around the lounge as she will be keen on handling them and they will chip or shatter!

– Buy her a brightly coloured handbag; put little treasures inside such as a fancy notebook and pen, little
metal pillbox without pills, a tiny doll or a teddy bear or both, a silver mirror or anything else special.

– Arm and leg protectors (latter stage).

– Purchase an electronic toy such as a Furreal Friend. She will be fascinated by it and will believe it is “talking to her”.
Mum was no good with our cat as she would handle it too roughly; therefore the cat would scratch her.

I bought a newborn puppy for my Mother as it was small enough for her to have in her lap.

It would bark and move its head which gave her such happiness.
It was very endearing to watch.
Mum would tell me how it had woken or if she forgot to pat it awake, she would tell of how it was sleeping.

Make sure you don’t leave your laptop on the kitchen table, as she just may swoop past and catch it with her fingers; and yes it will fly quite a distance before coming into land!!
This happened to my son’s laptop within days of Mother’s arrival.
Thankfully his work was backed up.
Actually it was such a hilarious thing to watch; Mother growled at the then 15 year old Sam for being so clumsy!!!!
She then joined in laughing with us, totally oblivious to what she’d done.
Obviously I had a replacement for Sam by the end of the day.

One thing I must add; you may find some relatives/friends, critical of your decision to care for your mother.
The ability to deflect their negativity is vital as it can become very tiring and their comments may hurt you deeply.
I lost a few friends who were critical of our decision as “out of sight, out of mind” was the way they believed “Alzheimer’s” should be handled.
The loss of their friendship was actually a relief!!

A good subtle sarcastic comeback phrase when dealing with negative people is “Good to know”. One thing I have realised in my 58 years of living is, “Never argue with a fool”.

My approach to the repetitive comments and questions from Mother during the day, was quite often dealt with by, “Is that right my darling?”.
I simply defused any anxiety she may have had by a gentle approach.
She often spoke of her Father picking her up and taking her for a drive. “He’ll be here soon my Darling” I would say and she would smile and of course forget within the next minute.
You will become an expert liar but for all the right reasons.

I had always called Mother “Darling” and she loved it.

In the latter stage she would come out with amazing random memories. Examples are as follows:
“You always have called me darling, Sandra.”
“You said you wouldn’t put me in a Home Sandra.”
“You said we would buy bikinis and go to Hawaii one day Sandra.”

When I was in my twenties I promised my Mother that I would care for her if ever she got old and couldn’t care for herself.

She was greatly comforted by this as she was working in an Old Folks Home at the time and was frightened she could end up in one so that’s when I made her the promise.

She tussled my hair and told me she knew I would do that. A lovely memory for me.

It was 20 years prior when I joked with Mother about going to Hawaii. We never spoke of it again!!!!

………………………………………………………………………………………………..

Alzheimer’s – A Simple Explanation

Alzheimer’s disease is the most common cause of dementia.

It is not a normal part of ageing.

It is a slow and progressive disease of the brain for which there is no cure.

The person’s ability to remember, understand, communicate and reason will gradually decline.

Eventually, a person with Alzheimer’s will lose all memory and mental function.

Looking at Alzheimer’s in a series of Stages often can be helpful to the main Caregiver.

Some use the 3 Stage as a reference and others the 7 Stage.

But of course it is important to be aware that they are only a rough guide as some stages overlap or may not appear at all.
Then again, some appear earlier or later.

There are many websites that explain all the technical jargon.

I always knew Mother was going to die from the disease so I needed to remain focused on being positive and keeping her happy and well so I avoided “over reading” the subject.

Even when she could no longer speak she would follow me with her eyes and smile at the birds or beauty in general.

She was always “in there” right up to the very end.