Why didn't someone tell me. . .I never new I had it!
I Answer: We didn't know either Mum. The disease is just being recognised and because it fluctuates, it takes time to work out what is happening.
My understanding is that LBD is protein plaques attaching to the brain networks, often in memory, reasoning & movement areas. It seems to be higher functioning than Alzheimers, in which the brain networks disintegrate and lewy Body disease is faster progressing.
The symptoms fluctuate (come & go). Often as a result the person affected can be misjudged "you're putting it on because you could do it ok an hour/day/week ago". The person has no control of the symptoms & they cannot be predicted. It can be confusing for all if not understood.
Mother says: I've run out of sweets, showing me her empty zip-lock plastic bag, as she had finished the last.
I Answer: Here's some (as I pull out the bulk bags to refill her supply).
Mother says amazed "I didn't know they were there" with a surprised very happy smile.
I Answer: Thats the best thing about your memory loss Mum.. .by the time you have finished your bag, you've forgotten there is more and get a nice surprise every time when I pull the bags out of your draw. I don't have to worry about you overdoing it on the sweets that way.
Mum laughs as she enjoys the thought.
A LBD symptom is to have a sweet tooth. There would be a weight-gain issue if Mother had an unlimited supply. She has a sandwich bag size that lasts a week, or two (if she forgets about them). It helps that she forgets there is a store of sweets, as she tries to spead out her supply.
Some hours /days /weeks Mother is very sharp and I have found she had discovered the supply herself. This fluctuates!
Mother says often "But I just had a drink!" not realising how many hours have past since the last one or because she has been dozing on the sofa.
Dehydration and Urinary Tract Infections has been a reocurring issue contributed to (amongst other reasons) when Mother forgets when she drank last or stops drinking. I tempt her by bringing a herbal tea that smells nice. I've learnt not to ask, just bring one if it has been a while, or leave it there if Mother is dozing. When she discovers it, as the aroma floats by, she will drink. Positive sensory impact is an important strategy for diet & fluids.
Mother says often "I have a funny head"
This can mean anything!
The obvious would be light-headedness associated with low Blood pressure, dehydration or lack of food, but this more often is not the case.
'Funny head' for Mother can mean a range of things and Mother taught me she usually goes through a process of elimination (when she is sharp mentally of course).
- She needs to go to the toilet
- She needs to eat or drink something
- she is getting a UTI
- Something is not right physically; i.e. she is tired.
Lewy Bodies appear to affect her autonomic nervious system and she often feels dizzy, light-headed. Orthostatic hypotension is a worry as a fall risk. If Mother became dehydrated the symptoms would increase. Mother usually has hypertension and we keep it balanced (just under CHF), to keep her brain perfused. Mother has improved since she first came to live.
Sleepiness is a fluctuating symptom. Mother will doze on the soda on her "days off" as she calls them (no day-care days). Because the alzheimer's day-care is located in the Hospital grounds, mother (being an ex nurse) calls it "going to work". She may some weeks decide to spend all morning in bed and watches TV when she can stay awake.
Mother says often "I'm Full" or "I'm not hungry" or "I have to force myself to eat".
It appears Lewy Bodies block pathways to feeling hungry. Once Mother begins to eat, the opposite can occur and she would continue eating as long as the food is available. I've been informed the pathways to inhibition can also be affected.
Mother says often "I'm always going to the toilet!" and sometimes refuses to drink to avoid this.
It appears Lewy Bodies block pathways leading to time perception dis-orientation (i.e. when it happened last). Faulty reasoning can be an issue limited by memory fluctuations.
Mother says "my bottom is getting heavier" and laughs.
Mother has regained the weight previously lost and is maintaining her weight, which causes her more effort when going to stand. I have raised seating for her.
Mother is also wearing Molecare disposeable pull-ups which give a bulkier feeling under her clothes. She is ressured once I point that out to her.
Mother needs to keep active to keep her muscles toned and prevent wasting which would lead to more falls risk and immobility. Arthritis has prevented mother from walking very far (since she was 65yrs old), and she is not into exercising.
How do we cope with keeping muscles toned?
- Walking to meals, bathroom & toilet daily. That also means no commode by the bed at night.
- Going to Alzheimer's Day-care three times a week involves going up and down the house steps as well as the Sunshine bus steps. Mother has a walker and there is always someone in attendance with steps. I also have hand rails in place for the steps, bathroom & toilet.
- Voltaren cream rubbed on her knees and affected joints for relief, thereby aiding mobility.
- Paracetomol for analgesia (usually required only morning and night and occassionally lunch time).
- Regular outings to the Dr., Medical centre & down town as required.
