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.