Family

Everyone in a family is affected by dementia. How they deal with it is very revealing. My husband has a son. He is very good about the big things ( a cane to help his Dad walking, a message centre) but what he isn't good at is contact. Phone calls are sporadic, maybe twice a week and that is something I don't understand especially given that when he was young and in the custody of his father, he had only to ask and his Dad would drop everything and be there. Calls don't have to be long. His father doesn't have the stamina for that anymore and I probably wouldn't think too much about it but you see I have a sister.
Not a day goes by that she doesn't call even if it is just to say How are you and what are you up to?. The contact makes me feel connected, knows that she cares about me and that makes the day much better.  She's never too busy to think of me. Do you how loved that makes me feel?

Wandering

this weekend for the first time in six years my husband went wandering. He chose the middle of a church service to leave the choir loft and head off to greener pastures. I had come to believe I would be spared this particular idiosyncratic behaviour but now it appears not. It is such a frightening experience! We live in the country with woods surrounding on us pretty much all sides so it means being even more attentive about where he is at all times.

Depressed state

How do you know when enough is enough?  How can you decide that you can no longer manage this person whom you love at home? This has been a particularly trying weekend and by the end of it I am a spent force physically, emotionally and just about every other which way. I berate myself and say " Surely you can do better than this?" but I am not so sure. His moments of clariy are becoming so few and the anxiety and endless questioning almost unbearable. Today we had a problem with something in the house. He would just go to the hotel desk and get them to fix it. Don't I wish.

imbalance

I was having a conversation with an acupuncturist who talked about acupuncture restoring the balance to your system. Tai chi often talks about the same things. Balancing is very difficult when you deal with someone with dementia. I try to excercise so I will keep my energy level up but how much is too much. You only find out really when you've crossed the line or maybe I am not good at reading the signals my body sends out.  I only know that when the end of the day comes and I put my head down I realize how tired I actually am. I think the pressures often are more unseen than see although that is hard to believe. For me at any rate the energy required to stay patient for a whole day is phenomenal and many days I just don't have it.

A reminder

Today was one of those days. You think you have a handle on things and then it happens; a day with a thousand frustrations, a temper that is frayed and an impatience that can't be concealed. You think " How can I behave this way?" You feel guilty but that is one thing I have learned. You can't be patient, loving and caring all the time. Sometimes you do feel out of sorts. Luckily tomorrow is another day. It has to get better right?

That sinking feeling

This morning was a difficult morning. I asked him to go to the sink so I could shave him ( he was already in the bathroom ) Which is the sink? he asked. Sometimes this disease makes you want to weep. This was a man who could quote almost every soliloquy from Hamlet as well as the best of Shakespeare's sonnets. He wrote his own sonnets which were well above the everyday standard. The trick is don't focus too long on what was, but steadfastly remind yourself that here is a man deserving of love and respect whatever his state and didn't you promise to love and honour in sickness and in healt?. I know he would do the same if the situation were reversed.

Respite

At the beginning I resisted putting my husband in the Daycare program. I thought the games and things they play would not keep his interest and he would become agitated. How wrong I was. These people are amazing. They make him feel special. They make him laugh. His brain gets engaged. By three o'clock he is tired and ready for me to pick him up and missing me at that point. The freedom of those few hours without worrying about where he is or the constant questioning gives me respite that has no measure and I am sure gives him a rest from me. We are so lucky that in our small town there is no difficulty in accessing this service as I understand in bigger centres there is a waiting list. And oh yes, the cost 16.00 a day. Priceless I say.

Unexpected side effects

I have found that there is an upside to dealing with dementia and that is the early bedtime. He likes to be tucked in by 9.00 and is unsettled if I am not there beside him. However going to sleep at 9.00 is not something I could ever achieve so I have taken to reading from 9.00 to 10.30. It is a wonderful time and I have gone through a huge number of books. Thank goodness for the public library and for the wonderful staff who locate titles for me. I haven't done this much reading in years and it is an unexpected pleasure.

Being contented

Early on in this process I was given a book called Contented Dementia written by a woman in England who was dealing with her mother's illness. She makes a lot of great points and the book is worth the read. I find the only time aggressiveness appears is if he is made to feel inadequate. For example if I get upset because something has been put where it doesn't belong he gets aggressive because of the implied criticism and perhaps rightly so because in the larger scheme of things what does it matter. The disease certainly points up what is important in life and what isn't.

The Unexpected

Yesterday I took a trip to see a musical. I congratulated myself on having thought of everything: someone dependable to look after him, supper in the fridge, medications left out in a box in their correct order, pyjamas on the bed in case I was late. What I forgot was that in his present state my husband is always worried about someone breaking into the house so that he locks all of the doors. That wouldn't be so bad except I have no spare key anywhere outside. Luckily for me the caregiver was resourceful and had a great sense of humor so things worked ot okay. Dementia comes with surprises some good, some not so good. What matters is how we handle them!

A Shavian riddle

Do you suppose there is any organ in the body we know less about than the brain? Dementia has taken so much of my husband and yet there is still this ability with words. A friend was coming to visit and was seeking directions. " Tell them we live at the George Bernard Shaw place." 
"How is that " I ask. "Well, we have a mail box with a pig on it. That makes us Pigmailion."
On my best days I wouldn't think of that so how does a man who puts milk in the dishwasher come up with such things.

Always the gentleman

I find it amazing what stays within the brain and what leaves.Some days I am his mother, others I am his sister. However what never leaves him are the good manners that were inculcated in the days of his youth. He always walks on the outside on any sidewalk ( that way if cars splash he gets it not me ), always opens doos and is unfailingly polite to the other clients at the Daycare so much so that one little old lady ( 93 ) is completely taken with him and his charming ways. Her face lights up when he enters the room. It makes me think of the movie Away from Her with Julie Christie and Gordon Pinsent. However I don't think I have been replaced in his affections, not yet anyway.

Diversification

People tend to lump all Alzheimer's sufferers together but the disease can take many forms.  In our case it is dementia with Lewey bodies. That means he sees things that aren't really there but they are definitely real to him. The gang of boys by the mailbox, the kids playing in the pool ( which is closed for the winter ) and the people having a picnic across the road. The neurologist told me of a woman who cooked a complete dinner for eight people that only she could see. Thank God he's not a chef.

Twilight time

People with dementia often have what they term sundown disorder in that symptoms are exacerbated in the evening. When my husband was in pilot training they used to talk about the various gradations of twilight and some wag inserted " blooding insulting twilight". That is how it is with this disease. The obsessive behaviour is more pronouced. There is an anability to settle. Doors get checked a thousand times. He looks to make sure his bike is still in the garage and he wants all noise to cease including that of the television in case it wakes his son ( who, incidentally lives a long way away and is 42 years old ). You begin to understand why nursing homes often medicate because if you have several patients with this disorder it would be all you could do to hang on to your sanity.

Another Day, Different attitude

The frustrating thing and also good thing about dementia is that every day is a new beginning. He doesn't remember the frustrations of the day before ( although I do ) and so we start with a clean slate.  I find the hardest thing is the endless repetition of questions. It is a bit like having a very young child but at an age when patience is harder to come by. My favourite piece of Scripture has become " let me run with patience the race set before me. " I just wish I had a better idea of the finish line.

Mind and matter

I have a husband with advanced dementia that I am looking after at home. This disease is called the Long Goodbye for a very good reason. I used to think at the beginning that people were just weak when they said it was too difficult to cope but have I learned my lesson. The toll it takes on the care giver is profound both physically, mentally and spiritually. You lose contact with friends. You become housebound. You deal with a sense of failure and depression. You may go for weeks thinking it is much better, you are coping much better and then it hits and the little house of cards falls down.