Dementia…

Standard

There have been spots on TV about dementia; the sufferers and the families that care for them.

I can’t go into great detail about the medical jargon and studies about it as it’s over my head. But I can go into detail about day to day with a dementia sufferer.

My paternal Grandma – Kay – has dementia. Not that she is aware of it; and will vehemently deny that she has it, but has it she does. Dementia shares some things with Alzheimer’s; memory loss and the like. My maternal Grandma – Dee – had Alzheimer’s. The similarities are such that I marvel that doctor’s can make the distinction between the two in a patient.

I will not bore you with the details of the similarities and differences of the two mental diseases. This is not the place for comparison.

My grandma still remembers our names; and what face that name belongs too…for the time being. Her mother before her (my great-grandma Rachel) also suffered from dementia (could have been Alzheimer’s but consensus has it as dementia) and I remember the day when my great-grandma looked at me and said “I don’t know who you are…” that broke my heart. I know that in the not so distant future that day will come for my grandma – Kay – when she’ll look at me and say she doesn’t know who I am.

I moved in with my grandma last year amidst the floods of 2013 in Alberta. We are most fortunate in that we live on a hill and should we ever be flooded out; our town will be wiped off the face of the map along with most of Southern Alberta. At the time I did not realize that the dementia was as bad as it is.

Her short term memory is gone…period. I had gone to look after my mom’s dogs for a month; and she has no recollection that I had ever left; zero recollection of her week in the hospital after a fall; no memory of my cousin and one of my aunts staying overnight after she was released from the hospital while I was away. Her release was contingent on someone being with her; she can no longer be left alone for long periods of time; anything over 2 hours requires someone to come and stay.

She doesn’t remember that she has eaten; or thinks she has and then doesn’t eat. We have daily ‘arguments’ about whether she has had something to eat or not. She’ll finish a meal and then 10 minutes later she’ll say she is starving because she has eaten nothing at all that day so far. When she is told that she had just eaten; she says we’re full of wind and that she hasn’t had a thing to eat. The reverse is she’ll say she is hungry so I will make up something for her to eat; and when I give it to her she tells me she isn’t even hungry and only 5 or 10 minutes have gone by – I tend to pre-make a lot of things so they are ready in a short amount of time; because I can tell my grandma that I am making supper and she’ll have no memory of me saying anything 2 minutes later.

Sample Conversation:

Grandma:

 Well I guess I should have some supper before I starve to death (for the record I hate this phrase).

Me:

I’m making some (fill in the blank) for breakfast/dinner (lunch)/supper.

Grandma:

OK

2 – 5 minutes later

Grandma:

 Well I guess I should have some supper before I starve to death.

Me:

I’m making some (fill in the blank) for breakfast/dinner (lunch)/supper.

Grandma:

OK

2 – 5 minutes later

Grandma:

 Well I guess I should have some supper before I starve to death.

Me:

I’m making some (fill in the blank) for breakfast/dinner (lunch)/supper.

Grandma:

OK

2 – 5 minutes later…

You get the idea…this will go on until supper is ready.

We have high points as well. I have learned to play cribbage (Crib) which is something I have wanted to learn how to play for a long time. She can still for the most part glance at a hand and know the exact point amount in it. She can still do cross stitch although her days of sewing may be well and truly behind her (she use to make drapes; a memory I have from childhood is drapes hanging from the rafters of the basement ceiling. She use to make clothes as well and according to my mom was a hell of a seamstress.)

She does have her own moments of frustration in growing old and dependent on people. She use to work 16 hour days and now spends most days in a chair. She also has very little patience these days, which in response I find my patience growing.

For a while we use to let her do her own bathing; but it was always a struggle to get it done. We have Home Care come in these days to help with the bathing. There is no struggle now; as I think having the nurses come in and help with the hygiene part is a relief to my grandma that she won’t get stuck in the bath (this happened to my late paternal grandpa; and my dad and uncle had to come over and pull him out) and it is a relief to myself and other family members because as her family there is just some things we would rather not do. It is my stance that healthcare should be foremost in hand in regards to funding from government; it should not suffer because some twit on the board of directors needs a new toy…I am increasingly unhappy with Alberta Health Services’ decisions. My grandma has a fondness for peanut butter on white bread and if someone wasn’t by to ensure she had a hot meal she would eat that 3 sometimes 4 or 5 meals a day (depending on if she remembered to eat…) she’d go through 6 loaves in the manner of 2 weeks. Even with getting Meals on Wheels; she’d throw them out and eat the peanut butter on white bread instead. These days I try and make sure that Peanut Butter on Bread is limited to Breakfast and even then limited in the number of days this occurs.

Any change sends her into a tail spin and the day is basically shot. This is anything from packing up unused dishes to changing the type of door lock. I am not kidding…the DAY IS SHOT!

She also has a colostomy bag; which has the potential to be disastrous should she forget to empty it…they only hold so much. We have been most fortunate that these accidents happen very infrequently.

For a lot of folks; their family member that has dementia/Alzheimer’s is in long term care. They visit for the day and then go home to their own house. But there are a few of us who live with the dementia/Alzheimer sufferer. There is no going home to our own space; there is no taking a break really.

She hasn’t wandered off yet; more because she runs out of steam by the time she hits the end of the front walk than anything else; but the possibility while remote is still there. The bigger possibility and a thought that I try not to think is this. She’s in her late 80’s; and it is a very real possibility that one morning I will wake up and she’ll be ‘gone.’

I have been asked why the family has not committed her to long term care. The long and short of it is because should she be committed to a care facility she’ll be ‘gone’ in a month.

So for now I stay with her…and keep her as safe as I can; with support from the family where they can.

If you know someone who has the role of care giver to someone who suffers from Dementia / Alzheimer’s ; support them however you can. Even if it’s just cooking a meal…or lending an ear.

It is most appreciated!

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