Dad's bowel movements...it has to be discussed.

Dad's constipation is getting worse...

Over the past 6-8 months Dad's bowel movements have changed.

I have gone from giving him a Sennetab (sennoside.B 7.5mg) 1 every 2 days to 1 every day to now, 2 every day. He also groans. When I first heard the sound I thought it sounded like a cow giving birth. I have read a blog where the person said it sounds like the noise a whale makes. It certainly is a different noise to the sounds an average person makes when constipated.

From reading http://livingwithlewybodyebook.blogspot.com/2008/04/what.html I realise this is the Parkinson part. His stomach muscles freezing. I have noticed over the past 2 months a few episodes of Dad freezing, to the spot, can't walk or talk. This happens more if he is trying to navigate his way into a chair. I think I need to keep a diary of Dad's bowel movements. To make sure he keeps regular and pain free and also if I need to discuss with Dr.

He also likes to tell me about his bowel movements. My Dad's private nature is changing. Sometimes at inappropriate moments. My Dad, Daughter and I were recently with a Real Estate Agent an Dad said how 'he thought the change in altitude had helped his bowel movements', huh! Later we all had dinner out and Dad said it was one of his best days he had had in ages.

Dad eats fruit, veges, beans/legumes and only whole grain bread. But next grocery shop I will be getting prune juice and stewed prunes. Hopefully this will help.

Over the past year I have noticed he eats a lot slower. Occasionally, he has taken 50 minutes to eat his dinner. He was having problems chewing red meat. So now we eat more chicken and fish (Dad loves fish) and occasionally pasta.

Dad is having a good day but gets confused as to what the time is. He is looking forward to spending Christmas day at my cousins. Dads sense of time is now child like, weeks appear to be months to him. But overall he is happy.

B12 injection.

It's 2.30 pm and so far Dad is having a good day. He has an appointment at family Drs for his B12 injection.

He has just had a shower. I get his clothes ready for him, get his towel, put then in bathroom and adjust the taps. The shampoo bottle is always purple and in the same spot. Everything is always in the same spot. This helps to reduce his confusion and stress levels. Dad is able to wash himself and dress himself. If I leave too much for him to organise, ie if I leave his clothes on his bed and he has to bring them down hallway and put them in bathroom. He ends up walking up and down the hallway, worrying, if he has forgotten something. He then worries where he will put the clothes, ie on the edge of the bath or on the towel rail. As his confusion gets worse he will then worry where to put his dirty clothes, it becomes too much for him to organise. So organising things for him keeps him from stressing.

He then gets the electric shaver from the nearby linen closet. It used to be kept in his room but I need it to be in my view because Dad pulled 3 shavers apart, breaking the internal wheels. Now I can see him get the shaver out and put it away.

For approximately the past 6 months Dad has had problems with phlegm. He has had chest x-rays and lungs are clear. But throughout the day and night he coughs and clears into a tissue. After reading livingwithlewybodyebook@blogspot.com I know that this will get worse. From what I have read I think this is part of the decrease in the ability to swallow.

Dad is watching TV now, my turn for a shower.

Dad used to doze off all the time.

During 2006 and 2007 Dad used to fall asleep a lot. He would just doze off. In the car (passenger) at home in front of the TV. When Mum was in hospital he could doze off at the most inappropriate times. For example when Mum was being resuscitated and intubated, when Dr's were discussing Mum's treatment. I think it was Lewy combined with stress. After Mum passed away Dad had quite a few episodes of narcolepsy. He would be drinking a cup of tea and just nod off, dropping the cup. Or eating and just fall asleep, head first onto the plate. During this time, he also when napping, would reach out his arm, plucking at the air or bend down trying to pick something up off the ground. This happened a lot during 2006 (Mum had bad rheumatoid arthritis) and late 2006-2007 (Mum was in hospital, COPD). Now Dad doesn't nod off much. He went from dozing perhaps up to 10 times a day to now having an afternoon nap every third day. And the plucking motions don't happen much now.
I have noticed over the past year, if I alleviate things which stress Dad out he has much better days and nights. I will over time discuss these things.

Dad has chest pains

Two weeks ago...

We were having dinner at my cousins and Dad goes grey. I ask him is he feeling ok. No, he has chest pains. He was looking clammy and wanted his top removed.
Cousin phones ambulance. Paramedics hook up ECG, not having heart attack but some irregularity is showing up. Dad goes to hospital, spends night. Blood tests show no heart attack but ECG still showing irregularity. Explained as a non-specific irregularity. Dad comes home.
Dad is home 2 hours, chest pains start again, phone ambulance. Similar ECG reading. Dad goes back to hospital. Tests reveal no heart attack. Again irregularity is said to come from a non-specific cause. The chest pains are believed to be from reflux and medication (Somac/Pantoprazole 20mg, 1 per day) is prescribed. Dad comes home. I take Dad to see GP, he doubles the prescription dose (40mg Somac) and prescribes another tablet (Motilium/Domperidone, 10mg, half hr before food) to help with digestion. He further explains how spasms of the oesophagus can cause the pain. I come home and read about Gastroesophageal reflux disease (GERD) and the possible link to Obstructive Sleep Apnea.
The following day Dad complains of chest pains again. I have to make a judgement call. Dad is walking, pain isn't severe, Dad's color is ok. I tell Dad the pain will go by itself. This happens again the following day. Since then Dad has had no more chest pains, the tablets are working. Thank goodness.

That brings us up to date. I wonder what tomorrow will bring...hopefully Dad has a good day.

Dad has sleep study.

Sill updating so I can then write about Dad's days and not his history...

Eventually Dad's name got to the top of the sleep study list.

Dad spent the night in hospital, hooked up, videoed and monitored etc. Conclusion, Dad has severe sleep apnea. His throat collapses 50 times an hour. At present we are waiting on list for hospital stay so Dad can be fitted and assessed with mask and air flow determined. If this does not work surgery may be required. This wait is frustrating, knowing that Dad's concentration could increase and possibly his cognitive functions.

Amazingly at the next Neuroscientist appointment, after her tests, she thinks Dad also has Alzheimers because the Lewy symptoms are progressing slowly. The diagnosis started off as Alzheimers, then it was Lewy, now it was Lewy and Alzheimers. Considering everything, the B12 episode and Dad's severe sleep apnea, I was so pleased to hear that the beast, Lewy, was progressing slowly.

Dad has a fit/seizure

Still updating the journey...

Dad had a fit and became unconscious.

I was cutting Dad's toe nails, sitting on the back stairs (outside). His right leg began to shake. At first I thought he was holding his leg in an awkward position so I could cut his nails. Both legs then shot out straight and he reclined to a 45 degree angle. At that stage of Lewy, occasionally Dad's body didn't seem to follow orders. So I was trying to help him to sit up. He then collapsed back on to the landing, his eyes rolled back and was going blue. I panic, begin CPR, thinking heart or does he need oxygen. Unsure, I race and phone for ambulance. Whilst on phone Dad becomes conscious. Writing about this disturbs me.
Paramedics arrive. Dad goes to hospital. Tests show he is ok.

Geriatrician orders more tests. Nuclear medicine test on heart. Heart is ok. Has EEG, not epilepsy. Has appointments with relevant specialists.
Neoroscientist evaluates results and thinks it was Lewy that caused the fit. She says more may occur.

Dad has episodes of night-time incontinence

Continuing the journey...

Dad was extremely distressed by a couple of night-time episodes of incontinence. Geriatrician organises consultation with incontinence nurse. Dad's prostate had been checked and was ok.
The nurse discussed the importance of drinking water to combat this. I had been making sure Dad drank water (hydration/blood pressure) but now I needed to increase this and be diligent. She explained how as people aged the 'making urine mechanism within the body sometimes went haywire and the body produced more urine during the night'. Maintaining a certain level of water during the day would help keep the body making more urine during the day.
Other stimulants needed to be watched also.
So now:
1 coffee before lunch.
Occasionally 1 cup of tea in afternoon.
1 juice with lunch and breakfast.
2-3 large glasses of water through out day, one of these with dinner. Plus the glasses of water to take tablets.
Nothing to drink past 6 pm, but if thirsty a drink.

The outcome has been amazing. Dad, on average has only had 2-3 episodes per month.

The hardest part has been trying to convince Dad to drink the water on the following days after an episode. The incontinence nurse made a house follow up visit and again explained how important it was to maintain the water drinking. Luckily, Dad most days accepts the water.

2008

Dad has further tests. CT scan, another MRI.
A sleep study is requested by Geriatrician.
The neuroscientist prescribes Aricept.

Dad also takes Aropax for depression. It was whilst Mum was in hospital that I took Dad to Drs about depression. It was this visit that the Dr should have read back and seen about Dad's B12 but we also discussed Mum and how she was doing (out of intensive care). This was part of the B12 chain of errors.

Dad has follow up monthly consultations with Geriatrician.
I notice an improvement in Dad's concentration. Aricept appears to be beneficial.

6 months after starting Aricept, Geriatrician's nurse finds Dad's heart rate is dangerously slow. I had been trying to keep up Dad's physical health by going for a walk every couple of days. I told her of on our last walk Dad had become very tired and had wanted to return home, stopping along the way. We are sent immediately to have an ECG. Geriatrician recommends coming off aricept, if heart rate returns to normal, its the Aricept. If not, its possible a pace maker would be needed. Dad has further tests on heart. Heart after a couple of weeks is ok again. It was a side effect of the Aricept.

One of the tests also show Dad has had a mild stroke. Thank goodness this resulted in Dad having no clinical stroke damage.

2007

My beautiful, strong willed, vivacious and at times frustrating little Mum passed away in May 2007. Even with her odd ways, she was great company and I miss her terribly.

Dad spends 3 months at my other brother's place. This brother lives approx 900 miles away. I know that I'm coping now only because of this break. It did Dad the world of good too. It helped him with his grief. Plus at home my other brother was having major out bursts, violent ones.
My beautiful cat died 3 weeks after Mum.

Dad returns and I'm able then to focus on him, getting him to Dr's.

We have an appointment with the neuroscientist and she has in her notes the phone call to Mum. She had wondered why there was no follow up. It was an awkward situation for us all. My thinking at the time was still one of disbelief, how could Mum have lied. Dad has a MRI, blood tests etc.
(Dad had an MRI, blood tests etc done in 2005, part of neuroscientist's evaluation). He also sees a clinical psychologist. Still an Alzheimers diagnosis.
Another bombshell, she asks 'is Dad still having his B12 shots'? First I have heard of it. She says to get GP to begin them. I come home read about pernicious anemia and how a B12 deficiency can result in dementia. I take Dad to family GP he does further blood tests and says his levels are ok.

Dad has an appointment with a Geriatrician. This Dr was so thorough. It was she that diagnosed Lewy Body Dementia.

Dad had been acting out in his dreams for years, maybe 15 years. He would yell and punch. Once he landed out of bed under the dressing table. Mum sometimes made him sleep in the spare room. He could have really injured Mum. Mum was tiny and with her rheumatoid arthritis she needed all the rest she could get. I had chatted with Mum over the years saying he should have a sleep study done or at least see the local Dr about it. Mum controlled everything and everyone.
She also hated Drs with a passion, stemmed from her not being able to walk till she was 10.
Needless to say, Dad never saw a Dr about his sleep disorder. Concerning her own health it took me about 2 years to get her to a Dr's. The Dr actually said to me later, why did it take you so long to get her here. I had down loaded so much information for her, discussed with her the different forms of arthritis and that is was a matter of urgency to get a diagnosis. It could have been an infection in the joints and medication was needed. That the other types needed to be combatted with medication, too. Other relatives asked her to see a Dr, she still refused.

It needs to be mentioned that the neuroscientist was told of Dad's sleep disorder.

The Geriatrician asks:
Has Dad ever had concussion-yes (fell off a ladder, aged 69).
Has Dad ever had a fractured skull-yes (as a child from a swing).
Occupation- (electrician and many years as a TV technician-electro magnetic waves).
Depression-yes (hospitalised for 3 months in 1979) Mum never visited him and I later found out she threw out his medication).
Falls-yes (2, one whilst walking and one out of bed).
Sleep disorder-yes.

Lewy Body Dementia is the diagnosis.

She asks about B12 shots, (she has gathered all Dad's medical history). I told her GP did blood tests and said they were ok.
She orders more blood tests. No he also has pernicious anemia.

I take Dad back to GP, I am furious. He gets out Dad's history. He knew of deficiency from 2005 tests done by neuroscientist and Mum knew. Mum didn't tell me. After many tears in Dr's we resolve the chain of events, he admitted 'saying his clinic was part responsible for allowing Dad to slip through the cracks'. He also showed me the blood test results he had from his test. They showed that Dad's red blood cell count (if I remember correctly, the points involved) was just over and he explained that it was a progressive disorder. I had read so much info about pernicious anemia and that now literature showed that this reading/level could mask the underlying condition. (as I said this is from recall and if not correct it is something along those lines)
Dad begins his weekly B12 shots. He now has monthly shots.

The B12 episode was the hardest and saddest time of utter disbelief for me. I find it difficult to think of that time. I remember shutting down emotionally, numb, blank. This was too much to cope with.

Mum's illness takes precedent over everything else.

I am trying to outline the journey so far. Then I can write about the present.

In 2005 I took Dad to see a Neuroscientist. After the consultation, the Neuroscientist phoned the house whilst Dad and I were out doing messages. When we arrived home Mum said she had received a phone call from the Neuroscientist. She told us there was nothing wrong with Dad. Mum lied. Why did Mum lie? Denial, shock; perhaps. Mum had a strange attitude concerning mental illnesses. She thought people could control their thoughts, behaviours...mind over matter. Perhaps she thought it best if Dad didn't know, that this in someway would help.
I found out by chance the following year about the Neuroscientist's diagnosis. It was when Mum was in hospital that I took my daughter to our local family Dr and he asked how Dad was doing. He said your Father's Alzheimers must be getting on. I was in shock, even though I knew he had some form of dementia, I knew Mum had lied because he said he had received the diagnosis from the Neuroscientist, the year before. Mum had just come out of intensive care, had a tracheotomy, muscle atrophy. Couldn't talk or move. Certainly wasn't the time to confront her. As Mum became stronger my cousin and I talked about Dad and his Alzheimers as a given. Later when she was strong and could talk and move, my cousin had a chat with her. Mum said she would never be able to cope with Dad's declining state. I never confronted her...it wouldn't have changed anything.
At this stage Dad was still functioning quite well. Considering the stress he was under and being extremely tired he could still follow the same path through the hospital to where Mum was. However, if Mum was moved he couldn't follow instructions of how to get there.
Looking back now I think I was on auto-pilot. Mum was very sick. Dad was slightly confused, not fully understanding Mum's illness. My daughter had a lump on her spine. My younger brother had had episodes of anger at the hospital and I was the brunt of his anger. Oh and the dog was sick, leave hospital got to vet, pick up dog, go back to hospital.
The lump, on my daughters spine turned out (thank goodness) to be a sebaceous cyst.
Upon reflection I don't know how I managed.

Dad's Lewy Diagnosis.

It was my eldest daughter who first noticed something wasn't quite right with her Pa. It would have been 2003. She noticed Dad's driving had changed. I put it down to him just getting older plus she is an extremely nervous passenger. It was 12 months later that the changes seemed significant to be of a concern. It was Dad's braking time. He was leaving it later than his normal to brake coming up behind stationary cars at traffic lights. At this stage it wasn't dangerous but bordering on reckless much the same as some young male drivers. No screeching tyres but there was a change. It was around this time that Dad also had trouble using an ATM. This infuriated Mum because it was only occasionally that it happened. To her, it seemed it only happened when she wanted to do something. At that stage Dad didn't have a diagnosis of Lewy Body Dementia. Mum wasn't aware of the fluctuations associated with Lewy. She often accused Dad of 'doing it on purpose just to get at her'. It was a sad time. Mum had really bad Rheumatoid Arthritis and Dad was caring for her.
In 2004 I returned to the family home. Taking Mum to Dr's, grocery shopping, gardening with her etc. Dad willingly gave up driving, saying he wasn't comfortable driving anymore. He did not want to hurt other users of the roads.

Introducing Dad.

Dad is 75 and has Lewy Body Dementia and Alzheimers. I'm not going to reveal his identity because he has always been a very private, quiet man and I don't think he would like his life displayed.
Dad has 3 children. I'm the eldest and only daughter. I am Dad's sole carer.
Mum passed away last year, aged 67, from COPD. I was also Mum's carer for her last 2 years. Mum's illness included 2 months in intensive care, months in hospital and months in rehab. I took Dad to the hospital everyday. For a period of 6 weeks during the suctioning stage, I stayed overnight with Mum. My youngest daughter minded Dad and brought him to the hospital each day.
Also living with us is one of my brothers who suffers from mild Aspergers. It was a very difficult time for him whilst Mum was so sick and after Mum passed away for him as Mum had always cared for him. He experienced great degrees of anger which did not help Dad with his illness and grief. Things have settled down a lot and my brother is now coping well.
I have 2 adult daughters, one married and studying and my youngest is at Uni.

I have a wonderful cousin who was my rock throughout Mum's illness, through decision's of resuscitation and intubation (twice). I can never thank her enough.

That's us in a nutshell. An introduction to my world.