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Maybe things happen for a reason…… July 26, 2011

Posted by nightowlza in Alzheimer, Alzheimer's and children, Alzheimer's Disease, Alzheimer's living with children, Alzheimer's New to this, Caring for Alzheimer's, Dementia, Living with alzheimer's, Memory Loss, Parents with Alzheimer's.
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My life has taken a total turn.  Rene always said “I don’t know where you come from cause you are so different to me.  You have no compassion or empathy.”  Well mom….maybe you would be pleased and proud to know I do have compassion and empathy after all.  What a pity that mom cannot see this for herself!

I gave up my job totally as it was impossible to concentrate on my work with mom calling for me the minute I left the house. Danie has been absolutely wonderful about this, putting himself in debt knowing that it is something I need to do.

I had been attending my Support Group for almost a year when the Leader of the Group phoned to tell me that she needed to step down and asked me if I would mind taking over the group from her.  I was delighted to do this!  This was the start to what I think was “my calling”.  I went to an Alzheimer’s SA workshop about the same time as I became the Leader of the Support Group and met Jill Robson the Regional Director Western Cape.  Since that day I have been working with Jill and help on her committee.  I do counselling whenever I can, be it on the phone or in someone’s home.  In September, which is Alzheimer’s Month I will be giving my first hour talk on mom.  This will be my test to see if I can actually do this without becoming too emotional!  I have done a couple of courses and in October I will be going to Johannesburg to do a Leadership Course.  I think meeting Jill was the best thing that could have happened to me as I want to do as much work as I can for Alzheimer’s and she seems to be more than willing that I help out.

Soon I will be visiting all the Old Age Homes to see how they all operate so that I can recommend them to people needing homes.

One of the ladies from the Support Group asked if Jill and I would give some training to the nurses of the home her mom is in which we did and I decided to adopt a couple of grannies that did not get visitors.  I started off adopting 4 and now have about 8 grannies and 4 grandpas that I visit weekly.  I am getting more and more involved with the children of the parents in that specific home.  One daughter heard about me in Port Elizabeth and phoned to ask if I could visit her blind mother.  She has become my favorite granny and I look forward to my weekly visits.  The old folk there are all so precious and I think I get more out of my visit than they get out of me visiting them.

I hope that my work for Alzheimer’s increases as this is what I love doing!  My life has never been more fulfilled!

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Wow…How time flies! July 26, 2011

Posted by nightowlza in Alzheimer, Alzheimer's and children, Alzheimer's Disease, Alzheimer's living with children, Alzheimer's New to this, Caring for Alzheimer's, Dementia, Living with alzheimer's, Memory Loss, Parents with Alzheimer's.
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It has been over a year since I last wrote on the blog.  Where I used to love writing the blog and telling everyone about Rene I now find it depressing more than anything else.

Rene is now a shadow of her former self.  I think she weighs less than 35kg (the last weight we got when we weighed her about a year ago).  Its impossible to now get her on a scale to weigh her.

Rene cannot stand or walk one step anymore.  Her hands are now totally useless as the brain is not allowing her to open her fingers at all.  This has caused major problems because the hands now get infected easily as the fingers dig into the palms and they bleed a lot.  The tips of the fingers are all raw and the palms are broken open.  It worries me that there is maybe something we can do about this but have had a physiotherapist, an occupational therapist and two doctors here to see her hands and they all say we are doing all we can for her.  We soak her hands in salt water every day for 10 minutes and then we have to pry those hands open to try and dry them well and put ointment and gauze in them.  Rene screams from pain every day and we feel so sorry for her but there is nothing else we can do.  The doctor said she can scream from pain for 5 minutes but if we don’t do the hands she would probably lose them.

Jenny, the carer, bumped mom’s leg against the wheelchair and the leg burst open.  We had the doctor here who thought she would have to go into theatre.  I went ballistic!!  Anyway…the doctor saw I was not handling this very well and went to chat to her partner who knows mom best.  He phoned to tell me that I can bring her into his surgery and he would stitch her up.  She had not been in a car since Selwyn’s funeral last year January.  What a mission that was to get her into the car but we managed.  The doctor took one look at her and said that her skin is too thin to stitch up.  Duh!!  Anyway he put some plasters on that keep the skin together which we will have taken off on Thursday which will be 2 weeks.  We have not let her get out of bed for 2 weeks to keep the pressure off the leg.  She does not ask to get out of bed and I just hope she wants to get out once this is all over.

Rene seldom talks anymore and when she does she seldom makes sense.  She lies in bed for hours on end staring at the ceiling.  Even when she sits in her wheelchair she stares at the ceiling.  She is not interested in visitors anymore and basically ignores everyone.

Very few visitors come to see her.  Its basically my brother Alan, nephew Brett with his daughter Tyla and my friends Fransie and Allan.  The phone calls have stopped except for Christine that phones almost daily!

Mom is still happy and comfortable besides the hand.  She never gives us a moment’s problems.  The carers on the other hand are giving endless hassles but I suppose this is to be expected.

Was yesterday the start of something new? April 16, 2010

Posted by nightowlza in Alzheimer, Alzheimer's and children, Alzheimer's Disease, Alzheimer's living with children, Alzheimer's New to this, Caring for Alzheimer's, Dementia, Living with alzheimer's, Memory Loss, Parents with Alzheimer's.
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Mom sleeps most of the day and is basically awake two hours between sleeps.  It does not matter who is visiting or what she is doing she wants to go to bed after being awake for two hours.  When we had the Jewish Passover here last month and had 25 people for supper mom was already asleep before we were seated at the table.  It was a sad occasion as Selwyn and mom were both missing from this very important holiday and our family feast!

Yesterday at 10am when I went to go check on why she was not getting up she said she wants to stay in bed.  She said the soldier who has visited the previous two days had said he was coming again and she was waiting for him.  None of us know who this soldier is that she is referring to.

I offered her breakfast in bed which she had never done in her life before and she said she wanted that.  We gave her a yogurt, tea and toast in bed.  I then told her that I thought she should get up to go to the toilet and she said no she does not want to get up.  I asked if we could change her nappy in bed and she was happy for this to be done.   She immediately went back to sleep.  At about noon she decided to get up.  Later that day when I tried to ask her about the soldier she just clicked her tongue at me as if to say I was mad with my stories.  She was unaware of any soldier.  Maybe this was a dream…

I don’t want her getting into the habit of being in bed more than she is at the moment as the Psychiatrist at the memory clinic said that the body must keep moving for the organs to keep working.  When patients don’t get out of bed anymore is when their organs start packing up.

Furthermore mom is healthy except for a bit of arthritis in the hands which is very painful for her.  She is very frail and can no longer walk more than 2 minutes outside at all.  She goes for walks in the wheelchair around the block.

We tried taking her to Sea Point for an ice cream and a walk on the beach front in the wheelchair but after 5 minutes she had enough and wanted to go home.

Sunday is her beloved sister Gertie’s consecration and mom won’t even be there 😦

Life is a bitch…

What can I say… April 16, 2010

Posted by nightowlza in Alzheimer, Alzheimer's and children, Alzheimer's Disease, Alzheimer's living with children, Alzheimer's New to this, Caring for Alzheimer's, Dementia, Living with alzheimer's, Memory Loss, Parents with Alzheimer's.
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I have not written on the blog for quite a while and I apologize, especially to those that keep asking why I am not updating it.  In the beginning, writing the blog, was therapy for me and I enjoyed the fact that people might learn from it when they have dealings with Alzheimer’s/Dementia.  Although to me not very much has changed since the last post, I am sure to someone not with her every day, this is not so.

Rene has become quieter and more subdued but I think she is happy and content.  When I think back to the time when mom moved into our home I cannot believe the screaming and shouting that took place.  The frustration was unbearable.  Today mom is a pleasure to have around.  I am so grateful that I stuck to my guns and did not put her into a home when I thought I would never be able to cope with this.  Now I am just sad and probably a bit depressed to see my mother today being hardly a shadow of her former self.

She knows who Danie, the kids and I are most of the time.  She asks for me the minute I am out of sight and although happy every time she sees me, I am the only one that she complains to.  The minute I walk into the room she says “Oh thank God you are here.  I have had such pains in my legs/hands or whatever else she feels like complaining about”.

The phone has almost stopped ringing and very few visitors come to see her except for family.  She still loves people and although she might not know who the person is she is happy someone has come to see her.  This is probably the saddest thing about someone that is so sick.  People seem to be scared and cannot cope with seeing the patient.  If only they knew how much visits meant to them…  When I think of the people Rene visited when they were sick, the mentally retarded and the aged she cared for in the Lions as well as all her customers she dealt with then I think about how unfair life is.

I don’t think mom realizes that Selwyn was her son.  I think she remembers this loving person that came to visit her and she misses that.  She has asked “when last has someone seen Selwyn” about 4 times and when we explain that he passed away and she went to the funeral, she will say “oh yes thats right” and carry on with whatever she was doing.

Mom seldom smiles anymore and Adam is the only one that can really make her laugh.

My brother, Alan, and his partner Maureen visit at least once a week.  I think for Alan it is also becoming difficult to see mom like this.  The two of us normally go to the support group together once and month and I know I enjoy this group and I think Alan does as well.

Danie, Adam and I have started ballroom dancing classes and I am loving it. As I said last night, its my one real break in the week.  Mom is in bed and sleeping by the time we leave and I feel I can just relax and although I still check the cell phone every few minutes I forget about home for a few hours!!

Mom is very well looked after with carers 24/7.  I see that she is always beautifully dressed as she would have dressed herself.  I see to it that she is bathed every day and washed down at least once a day or more if necessary and furthermore I have told the carers their priority is to be nice to her at all times.  Her life revolved around doing things for others and I want her to be comfortable in every way.  That is what she deserves!!

RIP Boet…We will miss you forever!! January 13, 2010

Posted by nightowlza in Alzheimer, Alzheimer's and children, Alzheimer's Disease, Alzheimer's living with children, Alzheimer's New to this, Caring for Alzheimer's, Dementia, Living with alzheimer's, Memory Loss, Parents with Alzheimer's.
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My beloved brother, Selwyn, passed away yesterday.  Massive heart attack which is the best way to go but does not make it any easier on us.  Every time Selwyn visited mom he would say “please God this never happens to me…I just want to drop dead one day”.  Selwyn had the most wonderful close family and they are just so lucky that they can all be together at this time.  Everyone is very shocked and I think its going to take a long time to get over this pain.   Hazel, Selwyns wife, is really special.  A soft, gentle, warm person who has dedicated her life to her family.  Selwyn loved her and the kids dearly.

As for mom, I think she understands that Selwyn has gone but she has shown no emotion.  Alan, my other brother, seems to think she shed a tear and her lip trembled when we told her but I dont think so.  I took her to see Hazel yesterday and she definitely seemed to know what was going on but the crowd of people irritated her and she was not happy there.  I also noticed that she can’t hug anymore.  Everyone was hugging her and she just sat rigid.  Very different to the affectionate lady we knew.  She had a restless night last night so I think she is upset but does not know how to show it or express herself.

Thankfully, Selwyn had visited mom regularly and he was always the one with the warmest hugs and affection for her.  They had always had a special relationship and she loved his humour his family and everything about him.  I always said he was her special child!!

Someone said to me yesterday “maybe he has gone now to help her when she gets there”.  Who knows…

I am convinced things happen for a reason.  If mom did not have dementia, yesterday would have killed her.  I dont think she could have coped with losing a child if she had been normal.

Same shit different day! January 13, 2010

Posted by nightowlza in Alzheimer, Alzheimer's and children, Alzheimer's Disease, Alzheimer's living with children, Alzheimer's New to this, Caring for Alzheimer's, Dementia, Living with alzheimer's, Memory Loss, Parents with Alzheimer's.
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Its been almost a month since I last wrote on the blog but there has really been very little to say.  The carers are all working out nicely, which has taken a big load off me.  I still stay home most of the time because mom still looks for me but at least I can relax more.

Mom is getting more quiet with every day that passes.  She seems happy and content.  Her body is definitely giving in and does not always know how to sit or how to stand anymore.  Spends a lot of time sleeping and very seldom talks.

On Christmas day mom was sure it was her birthday.  She said she was 100.  She was actually quite upset that nobody gave her birthday presents. *rolls eyes*

Visitors and phone calls are getting less and less and life just seems to carry on.

We need all the help we can get! December 14, 2009

Posted by nightowlza in Alzheimer, Alzheimer's and children, Alzheimer's Disease, Alzheimer's living with children, Alzheimer's New to this, Caring for Alzheimer's, Dementia, Living with alzheimer's, Memory Loss, Parents with Alzheimer's.
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We started with help 24/7 on Friday.  I contacted an Agency that supplies Carers who sent me 2 lovely women who are each working 5 shifts a week, 7 to 7.  Jenny is taking the 4 open shifts that are left.  I think mom is really enjoying all the fuss made of her and loves having someone in her room at night while she is sleeping.  I am also enjoying my sleep now that I am not lying half awake in case mom wakes up and calls.  I still need to learn to relax as I still keep the monitor on in case there are any problems in the room.  My friend, Judy, who lives in the USA is looking for a monitor for me with a camera so that I can be sure mom does not get up with low blood pressure as she is bound to collapse again.  I cannot believe these monitors are not sold in South Africa!!

Anyway, life is much easier with all the help although mom is still very confused and at times cries out that I must please get help for her because she is all alone and has not seen a soul all day.  Yip…some things never change!!

The extra help has been employed for a months trial as Sarah goes on holiday this week.  Its working out so well that I am sure this will now become permanent.

A few days in the hospital! December 14, 2009

Posted by nightowlza in Alzheimer, Alzheimer's and children, Alzheimer's Disease, Alzheimer's living with children, Alzheimer's New to this, Caring for Alzheimer's, Dementia, Living with alzheimer's, Memory Loss, Parents with Alzheimer's.
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Saturday, the week before last, mom collapsed in the bathroom.  Luckily Jenny was next to her and caught her.  We went to the doctor but he was not too worried and sent us home saying we just need to watch her.  In the garage as we got home she was dizzy again and could not walk.  The doctor then suggested we put her in hospital to be watched for the weekend!

I still have no idea why the physician at the hospital thought she might have clots in the lungs.  Anyway, being weekend, very little could be done and the tests started on Monday.  They did test after test after test and could find nothing wrong with the lungs but her blood pressure was low and she was dehydrated.  Because of these 2 problems, she had to be taken off her kidney medicine.  In the hospital she was incredibly drowsy and slept all day long.  We could not even wake her to eat properly.   The physician said she must get half her sleeping tablet and only half her tranquilizer in the morning.

When we got home she was back to normal but on the lower dose of medicines as prescribed. 

The first night we got up 8 times.  Twice to go to the toilet and 6 times I got to the room to find mom with an evening jacket on, no bra but with a nappy and her highest heels.  When I asked what is going on she said we going out.  This happened 6 times…6 different evening jackets!!  Needless to say the full sleeping tablet was given the next night.  As for the tranquilizer, I put her back up to her full dose of that as well as she  became aggressive again, kept on worrying about her money and it felt that besides her health that was now worse, we had turned the clock back 6 months.

Her feet are now starting to swell and I can see the kidneys are not behaving.  I have made an appointment with her physician tomorrow and will take it from there.

Nothing much has changed December 3, 2009

Posted by nightowlza in Alzheimer, Alzheimer's and children, Alzheimer's Disease, Alzheimer's living with children, Alzheimer's New to this, Caring for Alzheimer's, Dementia, Living with alzheimer's, Memory Loss, Parents with Alzheimer's.
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In the past month, nothing much has changed.  She is sleeping more in the day and waking up between 3 and 6 times a night.  I spoke to the doctor who said she needs a sleeping pill to have a good rest at night.  For the first 4 days I gave her half a pill and she did not sleep day or night!!  I then gave her a whole tablet and for the past 3 nights she has woken up once or twice a night.  This I can live with.  After being up all night with her, night after night,  I was starting to feel the strain.

She often gets up at night and dresses herself.  Its always in evening wear and the clothes dont match and normally the vest is sticking out.  She also puts a top and jacket on but forgets the pants.   She does not argue when I go in and tell her we going to undress her again because its only 2 or 3am.  Mom very seldom argues anymore.  When I say anything she does as she is told.

Stress levels at home are not great.  Dylan I think is in denial and spends most of his time in his room.  He will do his duty with gran when asked but tries to keep away.  He just says “its too sad” when I question him.  Danie is also taking a bit of strain I think.  He is becoming even more quiet (if that is possible).  He is still wonderful with mom but I can just see he is not his usual self.  Alex and Adam are absolutely wonderful.  Adam still shocks me every day.  He is really an amazing kid.  He chooses to spend hours a day with gran and you can see he enjoys doing it.

Today mom came to sit with me and said she has made up her mind she is ready to give up on life.  She does not want to go on like this anymore.  Who can blame her.  We had a nice discussion and I said if it was me I would feel the same as she does.  We also discussed how hard it is for the people that love her to see her going down so fast.  She mentioned that she feels sorry for Adam because she believes he will take it the worst one day when she is no longer here.

Tonight before supper, Danie, mom and I were sitting in the lounge when she called me near and whispered “can we ask the gentleman sitting in the chair to join us for supper?”  For a few minutes she had absolutely no clue who Danie was.  This upset him terribly.

When mom becomes lucid again we discuss what happened and the 2 of us have a good laugh about it.  She can’t believe how “silly” she was.  These “silly” moments are becoming more frequent every day.

Its a sad time for everyone.  There is very little laughter and fun in the house and everyone’s life seems to revolve around mom.  She does thankfully realise how lucky she is to have so many carers!!

Another birthday has come and gone! December 3, 2009

Posted by nightowlza in Alzheimer, Alzheimer's and children, Alzheimer's Disease, Alzheimer's living with children, Alzheimer's New to this, Caring for Alzheimer's, Dementia, Living with alzheimer's, Memory Loss, Parents with Alzheimer's.
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Mom was so excited about her party she was talking about it for days in advance.  Her clothes were discussed and she was taken to the hairdresser so that she would look nice.  She stayed a bit weary as to whether she would be confused on the day or not.

She was fine the day of the party.  She looked happy although she was very quiet.  She had her morning sleep as normal and we kept on telling her that if she could stay awake the afternoon she must try and be with her family and friends but she was not able to keep up and had to go lie down for an hour in the middle of the party.

Some visitors that had not seen her for a few weeks were shocked as to how she had become worse in such a short time. 

At about 4pm she turned to me and said “I have had enough of this now, can we please go home”.  (The party was at home)