One Day at a time

One of the upside things of this disease is that it forces you to take one day at a time. It is heartbreaking if you look back and compare him now to what he once was. It is equally fruitless to think about the future because you know the disease's progress. Instead you have to focus on this moment, this day. All in all that is not a bad thing.

Decisions

This week I have billeted artists for a local music festival. At first I wondered if it would be too much for my husband and then if it would be too hard for those billeted but I have to say both have worked out wonderfully. I shouldn't be surprised. The sensitivity it takes to be a good musician exhibits itself in other areas as well and both could see behind the present state to the giant that lives within and while my hsuband could not initiate conversations he certainly responded positively to the guests' stories. More importantly they made him laugh, always a good thing.

Tough decisions

Adrian's case worker came for a visit and we discussed the possibility of a short term stay in a suitable facility. On an intellectual level I know it is becoming necessary for my overall health but in the heart it is a very difficult decision. I know he would be well looked after but I fear he might take it badly. She reassured me that the first eight hours are difficult but then they settle in. Apparently they recommend respite like this every three months. That seems so unrealistic given how long I have gone without. A day here, two days there but no sustained break for almost three years!

Anger management

For the first time he let his frustrations out. I could not understand something he was trying to tell me and I asked him three times to repeat. He got very angry and told me it wasn't his fault if I was ignorant and stupid. I know that it is the disease talking but it was very shocking nonetheless and for the very first time I felt a weariness that extends to my very soul.

In my memory locker

Sometimes just out of the blue he makes the most amazing statements. The other day he told me that he feels " his light is fading " but that he wanted me to know when the darkness begins to descent his last thought will be of me and all that we had together. what greater gift could he give me?

Reading material

Sometimes despite the severity of the situation you have to laugh even though what you are seeing is tragic. This was a man who wrote sonnets, cantatas and could quote numerous of Shakespeare's soliloquies. But yesterday enjoying the sun, he took out some reading material and was completely engrossed. It was the phone book.

Precious moments

Sometimes you get so caught up in the negatives that you forget to actively push for the precious moments, holding his hand for that five minutes while you think about getting up or in the midst of the sundown times, giving him a hug. I am not certain of what it does for him but I know the calming effect it has on me and these precious moments are the ones I will hold in my soul.

The Dignity of life

This has not been a good few days. He has had several falls and today took a chunk out of his leg. He then had difficulty getting up but did not want help. It is not easy to see someone you love trying to haul themselves up by crawling to a chair to get a good hold on something. Add to that he had what I call an old man's accident, something which embarrassed him considerably. It then becomes important to try and preserve his sense of dignity. All of these things affect him mentally as well and so he becomes very agitated. Thank goodness tomorrow is a fresh start.

The many faces of dementia

So how does it happen. We have a great day and then along comes today where he has spent the entire afternoon looking for his passport because he will need it when he crosses over the border into Canada. No amount of reassurance that he is in fact in Canada and in his own home will change his viewpoint. He is adamant that he has to get back and he has had problems at the border before ( that part is true. He used to forget to take his passport when he was travelling ). This morning at church he played the hymns beautifully but then looked at me after the service and asked where Barbi was.

They say God gives you grace to meet the challenges of life but today I feel graceless.

Amid a crowd of stars

Sometimes my husband astounds me. Because I have had a break and am feeling a lot more upbeat, I decided today we would read some poetry first W.B. Yeats " When you are old and sitting by the fire "  Gone though much of his memory may be, he cogently explained why he thought bending low would be better than the words bending down which Yeats used. He then suggested we compare it to Shakepeare's sonnet When forty winters shall beseige thy brow for similiarities both in thought and composition. It made for a delightful breakfast and will keep me going for the rest of the day.

The pleasure of little things

Dealing with dementia on a daily basis can often be depressing but it doesn't take much to lift one's spirits. Today I looked out in my backyard and saw a pair of iridescent blue birds on one of the feeders. They were so beautiful and then a lovely heron flew overhead. Such reminders of the beauty to be found take one out of a grey world into one of sunshine even if only for a few moments.

Time Lapse

I realized with a shock that it had been over two weeks since I last posted anything. Suffice it to say that I have been busy. I had a weekend away in Montreal with my sister and it is amazing how three days can seem like a week when you are no longer focusing in on the needs of one person. I think he probably needed a break from me as well. After that I was busy with a choir concert at my church. This is the place of sanity in my otherwise disturbed life. Here I can lose myself in the beauty of the music and be at peace in my soul. Without it I couldn't have come this far.

Respite

This weekend I went away for two days to Montreal and while the trip was wonderful it does make you aware of how tired you actually are. In someways a better rest would be to place my husband in respite for a week and have an uneventful week at home. It seems to me the first little while that you are missing is the hardest. You need to find some way to make those first few hours bearable and I think Skyping might be the answer if the respite home has Internet. If he can see me he thinks I am there. While I was gone his son looked after him but I think it is very difficult for him to see his father in this state and so part of him is in denial. The usual caregiver does not have that luxury.

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.