Respite

[Dragonfly1]

Hi everyone I’m back in here again. If it’s not one thing it’s another lately. So we have a daily half hour care package arranged by SS. This started Friday just gone. The same day we had a visit from the CPN. So everyone is masked up and in uniforms. The CPN mentioned respite to Dad and said how did he feel about going away for a few weeks to a “guest house”
My mum isn’t very well and it’s very stressful for us all as a family at the moment. Since then Dad has been all over the place. We have had sleepless nights, shaking, fearful type of behaviour, hiding keys, trying to get out the house to “escape”. He has not been able to relax. His cognition is fluctuating. He refused his essential medication last night and I had to ring the out of hours memory clinic number for help. How can we ease Dads distress and fear. How can we get some respite without worrying about him not knowing us when he sees us next? How actually would tge respite happen if he refuses point blank. He agreed to respite to the CPN but it’s obviously played in his mind. His behaviour has become even more erratic. He told my sister he thought someone was coming to take him away. The system for everything is rubbish and does not consider the real needs of people with dementia. I don’t know how many phone calls I have taken from SW, care team, doctors, nurses etc - all terrifying for Dad. ??

 

[canary]

Hi @Dragonfly1 , that sounds pretty horrendous.
When I was ill just over a year ago OH played up dreadfully because his routine had been completely disrupted and it made him horribly anxious.

Im going to be totally honest with you now. When there is an emergency like this you have to look at what everybody needs and not what everyone wants. This applies to your mum and the family as well as to your dad. Your dad may not forget you - my mum didnt despite being in a care home for 3 years and at times not being able to see her for a few weeks at a time - or equally he may forget who you are despite being at home. Nothing is going to be perfect, so dont look into the future and try and second guess things. Concentrate on the now and work out what is in the best interest (or maybe, least worse) of everyone concerned.

xxx

 

[Grannie G]

He told my sister he thought someone was coming to take him away.

Poor dad. It really is best to tell the majority of people with dementia as little as possible about anything that may happen in the future. I know it feels deceitful but it saves so much confusion and anxiety.

I understand your dad will have picked up your mum`s anxiety which will make it even harder and of course you are in the middle trying to make life better for both mum and dad @Dragonfly1. It`s tough all round and I hope you manage to calm things.

 

[Dragonfly1]

Hi @Dragonfly1 , that sounds pretty horrendous.
When I was ill just over a year ago OH played up dreadfully because his routine had been completely disrupted and it made him horribly anxious.

Im going to be totally honest with you now. When there is an emergency like this you have to look at what everybody needs and not what everyone wants. This applies to your mum and the family as well as to your dad. Your dad may not forget you - my mum didnt despite being in a care home for 3 years and at times not being able to see her for a few weeks at a time - or equally he may forget who you are despite being at home. Nothing is going to be perfect, so dont look into the future and try and second guess things. Concentrate on the now and work out what is in the best interest (or maybe, least worse) of everyone concerned.

xxx

Thank you I will bear that in mind. X

 

[Dragonfly1]

Poor dad. It really is best to tell the majority of people with dementia as little as possible about anything that may happen in the future. I know it feels deceitful but it saves so much confusion and anxiety.

I understand your dad will have picked up your mum`s anxiety which will make it even harder and of course you are in the middle trying to make life better for both mum and dad @Dragonfly1. It`s tough all round and I hope you manage to calm things.

He’s woken a different person this morning. He’s usually on a bit of a high after the nurse has been then he crashes down after lunch. Fingers crossed today is a little different. X

 

[Lynmax]

My mum went into a care home last April at the start of the first lockdown so our visits to her have been few and far between. We first saw her in a gazebo four months after she went and she obviously had no idea who we were and got quite upset. But after hearing our voices and sharing some cakes with us, she gradually relaxed and was able to remember us.

Then visits stopped as mum caught Covid and Greater Manchester went into additional restrictions before most of the rest of the country. Our next pod visits were five months later and this time I don’t feel that mum ever really knew who we were, talking through a poor quality microphone and a scratched plastic screen was very difficult. Mum got very agitated and angry with us which was very upsetting so I was about to stop visiting but then my sister became her nominated visitor and the difference was amazing. Being able to sit next to her and hold hands meant an almost instant reconnection.

So while there might be some issues if your dad goes into a care home, they might not be as significant as you fear.

 

[Dragonfly1]

My mum went into a care home last April at the start of the first lockdown so our visits to her have been few and far between. We first saw her in a gazebo four months after she went and she obviously had no idea who we were and got quite upset. But after hearing our voices and sharing some cakes with us, she gradually relaxed and was able to remember us.

Then visits stopped as mum caught Covid and Greater Manchester went into additional restrictions before most of the rest of the country. Our next pod visits were five months later and this time I don’t feel that mum ever really knew who we were, talking through a poor quality microphone and a scratched plastic screen was very difficult. Mum got very agitated and angry with us which was very upsetting so I was about to stop visiting but then my sister became her nominated visitor and the difference was amazing. Being able to sit next to her and hold hands meant an almost instant reconnection.

So while there might be some issues if your dad goes into a care home, they might not be as significant as you fear.

Thank you for telling me about your experience. We will certainly bear it all in mind. X