Being a Carer and coping with Sundowning

[McGirr]

As most members are aware Penny and I left our jobs near Broome and drove to Wollongong to look after my ailing parents, mostly my father, to help my brother and sister who have been doing it for a while between their work commitments.

We moved into a back room and packed all our gear into the garage.

Dad has had, in the last 5 weeks, all his toes on his left foot removed due to the lack of blood flow to his toes, plus has cancer in his blood, which is terminal.

He has been in hospital for over 10 weeks being moved from public and private hospitals. He has been home now for 3 weeks and this is where we all learnt about sundowning.

https://www.dementia.org.au/about-dementia/carers/behaviour-changes/sundowning

We both got approved for a careers allowance which between us is around $829 a week, which we assist in buying food and Penny spends time cooking for them. Penny has recently had gastric sleeve surgery and is getting over that.

https://www.bodyfree.com.au/gastric-sleeve?gclid=EAIaIQobChMIo9n44ebb4QIVyyMrCh0gZQn9EAAYASABEgJRofD_BwE

We are learning to understand the strain of looking after a family member with sundowning. It’s is a real eye opener as naturally we have never heard of it or been in a position to care for a person with this problem.

What happens is that after the sun goes down dad is fine for a while and then he starts getting confused. Cannot remember where the toilet is or his bedroom. He uses a walker to get around.

Some other sundowning activities have been:

As his foot, with his toes missing, is always bandaged, he has taken his bandage off at night on a number of occasions. It is not a pretty site. Normally I get Mum to re bandage it as she is good at it.

Finding him in the shower thinking it’s the toilet

Trying to open the front door to go to work ( we lock all doors)

Knocking on the back door asking to come in, when he already inside.

Just waking up and deciding to go for a walk.

Waking up stressed, thinking the ceiling fan has fallen on him, even though we don’t have a ceiling fan in his room.

Trying to take his bandage off looking for a hamburger.

These things happen at all hours of the night with some nights he will get up at least 5 times. Unfortunatly he cannot remember what he does each night. It’s like he is another person.

To counter this we have tried having him sleep on the lounge but he still gets up. Mum sleeps on her chair in the lounge room and has been for the last 15 years and she gets woken up when dad decides to go for a walk. We have recently put him in his bed with a toilet that has handles and a bucket to give Mum a chance to get sleep. He will sleep for a while then around 11.00pm on wards he will wake up on a number of occasions until 3.00am. We shut doors to stop him from getting lost in rooms.

Both Penny and I take shifts sleeping in the main house with one of us sleeping in the back room to get a full nights sleep. I normally do a 2 night shift and Penny one. It can be very exhausting as you need to try and find time to sleep when he is, to catch up on the lack of sleep. If any of us have to go out we make sure someone is here with dad just in case something happens. This is 7 days a week. I get him ready for his shower each day and make sure he is happy with what he is wearing. I also make sure he takes all his tablets at the correct time each day. If I am out I ring Penny to make sure she has his tablets ready for him. We have a community nurse who comes each day to dress his foot. We are not sure how long we will be here but have dedicated a year to do this and see what happens from there.

Dad is 83 and Mum is 80. Mum is still ok but also gets confused on some occasions and naturally gets cranky with dad when he does things so we have to be here to explain things to dad when he gets confused. We are looking at whether we sedate him at night but with the amount of tablets he is on it could cause more confusion so we will be chatting to his local GP for advice.

To try and have quality time I attend a gym nearly everyday for an hour and Penny will go food shopping and occasionally we will both go out and make sure Mum looks after dad for the short time we are out.

This post is no way looking for sympathy, as you do what you can for your parents,  but more for any member who may go through this or has been through it, that we are happy to always chat and understand what is involved in caring for our elderly parents with sundowning.

Mark

[Paddler Ed]

My parents are going through a similar experience with my 92 year old maternal grandparents.

Unfortunately (or fortunately) it was grandmother's funeral yesterday - so that does take a load off - as she had paranoid dementia.

Things they learnt:
1) Make sure you have lasting power of attorney set up, and have the conversation early - We're doing that for my parents now (they're 70) as they definitely have all their marbles. It was touch and go with my grandmother as she had kept a dementia diagnosis from the rest of the family, so that put them in a difficult spot. They had some parts in place, and a good relationship with the local professionals, but had difficulties when dealing with non local professionals.
2) If someone in the family isn't pulling their weight, sort it out. My mum was organising my grandparents pretty much on her own (with Dad's help) for about 4 months. Big blow up with her sister (who lives 20mins down the road) who had done SFA to help (and is 12 years younger) to get her involved in helping.
3) Work out what care options there are, how much they are and at what point to move from home care to professional residential care for your own health and well being.
4) as you've already said, make sure you do things for you - until my parent's got my Aunt involved, they were each with my grandparents at least 4 times a week running them around the area.

Good luck!

[Titfish]

Hi Mark,

My thoughts are with you and Penny and your mum too. I lost my mother to it a couple of years back.

I could go on and on about it but it’s better to remember her as she was before it snuck up on her. Enough to say it is a difficult journey for all but one thing it can’t take are all those good memories of years ago.

Good luck with it all and remember to take care of yourselves too.

Best wishes
Ken

[KeithB]

Mark, you and Penny are saints.
Keith

[Pottsy]

Mark, being a full time Carer is one of the most undervalued tasks you can do from a financial point of view but from a personal point of view it is also incredibly taxing on everyone involved, even more so when dealing with dementia.
I have been my wife's full time Carer for nearly three years, she has Parkinson's ( age 58) which thankfully has greatly improved due to Deep Brain Stimilation surgery.
We now are starting to see signs of dementia in both of our mothers, aged 83 and 88 and are putting medical directives, enduring powers of attorney etc in place in expectation of the further downhill slide.
I like others can only suggest that you look after yourselves as well, it is easy to forget your own health.
Make use of local health and council agencies where you can, Centrelink should be able to provide you with a list of agencies that can help.
Accept help wherever it is offered, stubbornness can be your enemy.
All strength to you and Penny, what you are doing is not easy particularly when dealing with loved ones.
I wish you all the best.

[McGirr]

Mark, being a full time Carer is one of the most undervalued tasks you can do from a financial point of view but from a personal point of view it is also incredibly taxing on everyone involved, even more so when dealing with dementia.
I have been my wife's full time Carer for nearly three years, she has Parkinson's ( age 58) which thankfully has greatly improved due to Deep Brain Stimilation surgery.
We now are starting to see signs of dementia in both of our mothers, aged 83 and 88 and are putting medical directives, enduring powers of attorney etc in place in expectation of the further downhill slide.
I like others can only suggest that you look after yourselves as well, it is easy to forget your own health.
Make use of local health and council agencies where you can, Centrelink should be able to provide you with a list of agencies that can help.
Accept help wherever it is offered, stubbornness can be your enemy.
All strength to you and Penny, what you are doing is not easy particularly when dealing with loved ones.
I wish you all the best.

We have been lucky as my sister has power of attorney and looks after all the bank accounts and all the wills are up to date.

Waiting for ACAT to assist is still 6 months away so my brother, who owns a muffler business, has made hand rails for the steps and the toilet using muffler pipe bending it to the perfect shape while his son, who is a builder, will be building a ramp at the front of the house for easy access.

So thankfully everyone is pitching in to help.

Mark

[Foo]

It's a hell of a situation that you find yourself in and there's no easy out. 

Foo

[edz]

Some tuff days / nights decisions and stress will lie ahead, I feel for you all , best wishes .. 
 I  cared for my Dad on an increasing scale for 12 years till he hit hospital. took us about 8 months of jumping through hoops to get legal guardianship sorted and just on a year to finaly get a spot in a nursing home, Cancer related illness took him out 10 months later.

[Craig Tomkinson]

My heart goes out to you three as theses are very tough times in your life, I helped look after my dad till he passed and mum till she went to a home, Craig

[akd]

Please talk to their doctor and get put in place respite care for your father.
This can be beneficial to all of you.
I work in dementia care and see the relief that families get
For themselves for a short time.
Thinking of you.at this time.
Ann

[Traveller]

Couldn't agree more with Paddler Ed and akd.

My Mum had dementia for the last 8 years of her life which is horrible. In the end she didn't know anyone, and I felt cheated as you really do lose your parent, even though they are still alive. At the same time my wife and I were looking after my father as well as her folks. In the end my Dad was 90+, legally blind, and living home by himself, but fortunately had a very happy outlook on life. Even so it put a lot of pressure on the pair of us.

This is where all the powers of attorney were worth their weight in gold. I would hate to see what would happen if you didn't have them. We didn't choose the respite option, but in hindsight, we should have. It is so easy to not see what is happening to the carers, and the rut you are getting into. Please look after yourselves as well.

I can only relay my sympathies along with the others. Make every lucid moment count, because our folks have been gone nearly 10 years now and we still miss them every day, and regret not asking them enough questions.

[Beachman]

Thanks for sharing and agree it’s tough.  About 10 years ago my Father was diagnosed with Myeloma (Blood cancer) and was given 3 years. 2 years after the diagnosis my Mother suddenly passed away which meant Dad was suddenly alone. 

My Father was a proud man who hatted asking for help, but his biggest fear was going into a nursing home. So even though myself and my Sister had our owns families/kids (My kids were quiet young at that stage)  we looked after Dad for 10 months at home.

I would go down before work and arrange his 20+ tablets and then leave from his house to work, then return at night for his next 20+ tablets and help with dinner. My Sister would go during the day to do his shopping, clean the house, pre make meals and take him to lots and lots of Doctors appointments. 

The last 3 months were probably the hardest as by then he was really suffering from Sundower syndrome (part dementia and part doped out from the strong cancer painkillers) so I found myself returning to my Father’s house a couple of nights per week after having dinner with my family/helping with kids homework.

We did this up until the 2 nights before he passed away as the painkillers we had at home were no longer strong enough and he needed hospital strength painkillers.

Won’t lie as working full time in a stress job, helping care for Dad and raising young children was very very hard, but I always believe you do what you have to do for family, but looking back I’m so glad we did it as those last couple of months bought as closer together then we had even been.

After seeing what I saw especially those last 3 days, I now believe we can live too long and now an advocate for euthanasia.

[Bird]

In the end my Dad was 90+, legally blind, and living home by himself, but fortunately had a very happy outlook on life. Even so it put a lot of pressure on the pair of us.

went through the same with dad, but he missed mum lots and couldnt wait for it to end... specially once he lost his sight.
he was at home for as long as he couldnt - i couldnt put him in a home, but one day after a few scares, he made the decision. it was high dependency care , being deaf and blind and diabetic wasnt a good trio.. sadly the place he was in was a bit of a hell hole.

Please look after yourselves as well.

this lots.

[Kangaron]

. sadly the place he was in was a bit of a hell hole.

This scared the crap out of me  There was no way I could put my mother in one, so I had a unit put in my back yard.
The unit was supplied by DHHS and no building permit was required and they had subbies erect it and connect the services.
When my Mum passed, they took it away again.
Cost us nothing but $80 a week rent.
DHHS has about 400 of these units but don't promote the service at all.

[Pottsy]

Sadly, a common thread is how many of us are looking after loved ones in their twilight years, we were fortunate that my father got into a good home, sadly he could no longer walk any distance in his last couple of years, pretty much confined to a wheelchair or bed.
Completely lucid but you could see it sucking the life out of him.
Not sure what we need to make government more aware of the difficulties people face, hopefully further investigations and inquests into aged care facilities will help.
I know some will say just a waste of money but it has to start somewhere.
Just the costs alone can be prohibitive. I know when dad passed I emptied his room out within 12 hours to make room for a new resident, I got it done quickly as I knew how difficult it can be to find a spot.
There needs to be more availability for assistance with home care.

[McGirr]

Fully agree regarding more funding is needed for home care.

My sister put in for assistance back in October last year and we may see this coming around August this year. Our neighbours across the road are elderly and looking for financial assistance for lawn mowing and house cleaning but where told there are 100 people ahead of them also waiting due to the lack of funding.

 Unfortunately, when people get onto this merry go round, they will see how frustrating it can be when your aging loved ones are treated like a number and you have to fight and push to get things done.

Mark

[achjimmy]

Mark all the best with it. It’s an incredibly hard time and thanks for raising this for others .

For those in NSW make sure you get power of attorney and enduring guardianship, the latter is often over looked and is actually the critical one. POA is financial but ED covers health and decisions and are the ones medicos and homes look for.

Get in early with acac assessment (aged care assessment) this can also be done with out your folks realizing its being done but is critical if further help is needed.

And don’t forget centrelink. I found the staff really helpful and understanding but the system is a total hard case

Re retirement homes it’s scary I am a believer in finding a good one early and getting them settled (and accepted) . It was very hard to do this but once advanced dementia sets in most will not take them and then the  dedicated to dementia ones remind me of something from “one flew over the cuckoos next” !

Th carer option is great but not everyone is capable of it, so alternative help shouldn’t be frowned on.

[chester ver2.0]

My parents are going through a similar experience with my 92 year old maternal grandparents.

Unfortunately (or fortunately) it was grandmother's funeral yesterday - so that does take a load off - as she had paranoid dementia.

Things they learnt:
1) Make sure you have lasting power of attorney set up, and have the conversation early - We're doing that for my parents now (they're 70) as they definitely have all their marbles. It was touch and go with my grandmother as she had kept a dementia diagnosis from the rest of the family, so that put them in a difficult spot. They had some parts in place, and a good relationship with the local professionals, but had difficulties when dealing with non local professionals.
2) If someone in the family isn't pulling their weight, sort it out. My mum was organising my grandparents pretty much on her own (with Dad's help) for about 4 months. Big blow up with her sister (who lives 20mins down the road) who had done SFA to help (and is 12 years younger) to get her involved in helping.
3) Work out what care options there are, how much they are and at what point to move from home care to professional residential care for your own health and well being.
4) as you've already said, make sure you do things for you - until my parent's got my Aunt involved, they were each with my grandparents at least 4 times a week running them around the area.

Good luck!

Whole heartily agree with point 2 we are going through it now with my father in law and sometimes someone a bit outside the family gets results. After i went out to the farm and had some serious words with one of the sons not pulling their weight he is completely on board, especially after he thought he could make calls on how things should run

[saph]

McGirr being someone that has delt with this before (i was training in aged care and after i saw it i just got out and couldnt do it because i didnt have the heart for what they go through at times, one being someone who had always caught the 5:30 bus and having to for 30 minutes sit at the fake bus stop that was set up i just couldnt so got out before finishing training) i know how hard of a thing this must be for you and family, as others have said get some assistance set up to help out when you need it when you feel like its getting to much not when your ripping your hair out with stress.

Re retirement homes it’s scary I am a believer in finding a good one early and getting them settled (and accepted) . It was very hard to do this but once advanced dementia sets in most will not take them and then the  dedicated to dementia ones remind me of something from “one flew over the cuckoos next” !

Defnetly get onto this stuff early (like right now start looking style early) because places like retirement homes can have a wait list and can and do refuse past a set stage of dementia because its to much for them to get into the high dementia section and accepted with others if its all of a sudden high care. but please make sure you see about seeing a room and where they place family members most places if you do a couple will accomodate them (during my training i did in room food delivery rounds and there was one lovley couple that always said good morning to everyone and it just put that little bit of light in a dull seeming place.

Anyways ive rambled to long now so good luck and you and your family will get through what will feel like a tough time.