Respite

[Scarlett123]

Your husband is your priority, so it is perfectly natural that you want to make sure he gets the very best treatment. Why don't you list the questions you want to ask, on here, and perhaps people can suggest any others things.

Always best to be proactive

 

[Aisling]

a good idea Scarlett so here goes;

What happens if I die before T? Will he be reassed for care cost? Will his care continue?

When his condition deteriorates more, will CH be able to cope?

If he becomes more angry and aggressive, will they be able to deal with it?

Do they have a chapel of rest on site?

Do they give end of life care?

He gets respite in a public CH. He is happy there and staff are supportive of me too.

The cost of Private or public CH is about the same. With Public, there are more nurses and carers on duty and that is the reason I am thinking about it. Also it is a huge old adapted house , the old entrance hall kept the same and it is beautiful. Surrounded by garden and fields which T likes. Comfortable room and plenty of space to walk around.

He gets respite on Monday for a week and I need to ask questions.

Manager has already have told me, he will need full time care and it can take months to organise it. The professionals have told me that for the past 2 years but I wanted to care for him myself.

Any advice appreciated please.

Thanks to everyone who responded to me.

Aisling

 

[Casbow]

I can only really say that it hurts to read. Living inside this dementia land feels to me (only my personal view) like it is easier 'having' it than 'having' to deal with the consequences of it!

Just keep on being as tough as you are my friend.

wayne

Aisling you are amazing. Going by what you are saying, you are really being tested,and I don't know how you keep going. Maybe permanent respite is the answer. You say he is happy in respite so maybe you could be happy if you visited and then was able to relax.How much more difficult does this dementia lark have to get. I feel for you and everyone who has to cope with so many problems. I am lucky at the moment as the medication my OH is on seems to be really helping.xxxx

 

[Scarlett123]

a good idea Scarlett so here goes;

What happens if I die before T? Will he be reassed for care cost? Will his care continue?

When his condition deteriorates more, will CH be able to cope?

If he becomes more angry and aggressive, will they be able to deal with it?

Do they have a chapel of rest on site?

Do they give end of life care?

He gets respite in a public CH. He is happy there and staff are supportive of me too.

The cost of Private or public CH is about the same. With Public, there are more nurses and carers on duty and that is the reason I am thinking about it. Also it is a huge old adapted house , the old entrance hall kept the same and it is beautiful. Surrounded by garden and fields which T likes. Comfortable room and plenty of space to walk around.

He gets respite on Monday for a week and I need to ask questions.

Manager has already have told me, he will need full time care and it can take months to organise it. The professionals have told me that for the past 2 years but I wanted to care for him myself.

Any advice appreciated please.

Thanks to everyone who responded to me.

Aisling

I know, from LadyA's problems that organising care in Ireland is different, and I remember she had to wait a long time for it to be sorted out. Those are great questions, and it seems that you are very content with the level of care that your hubby gets when he has respite.

If you apply for Permanent Care, will they be able to offer continuous respite care until then? I don't know how these things work, but that could be a solution, if your finances can cope with this. You've done a wonderful job, but we can all only do our best.

Remember, when hubby has respite, there are different shifts of carers available, and they don't have to be on permanent duty like you are. It's a very hard step to take, and I agonised over it for months, but eventually I asked myself what would happen if I tried to carry on for a further week, or month, or 3 months, and I knew I just couldn't do it any longer.

And, I'm assuming, if the wheels are set in motion, and you should have a change of heart, you can't be forced to go ahead?

 

[Aisling]

Aisling you are amazing. Going by what you are saying, you are really being tested,and I don't know how you keep going. Maybe permanent respite is the answer. You say he is happy in respite so maybe you could be happy if you visited and then was able to relax.How much more difficult does this dementia lark have to get. I feel for you and everyone who has to cope with so many problems. I am lucky at the moment as the medication my OH is on seems to be really helping.xxxx

Thank you Casbow. In another life, no matter what I decided to do, I was always able to succeed eg working full time and lots of studying. Caring for my son as all Mums do. I feel helpless now and angry with myself. Why can't I continue to care? What is wrong with me? Other people are amazing.i got through today by telling myself to put one foot in front of the other foot! Sounds crazy. Tense atmospheres bother me so much. I see this as my weakness. I can't concentrate on normal stuff eg organising bills etc in a tense atmosphere. My day goes with caring for T. I seem to spend my time between cooker, sink, washing machine and mopping. In the middle of it all today, I managed to burn the dinner!! Who burns an Irish stew? Pathetic! The grieving for my " lost" T and the loneliness is horrific.

Am so pleased meds are working for your OH.

Aisling

 

[Aisling]

I know, from LadyA's problems that organising care in Ireland is different, and I remember she had to wait a long time for it to be sorted out. Those are great questions, and it seems that you are very content with the level of care that your hubby gets when he has respite.

If you apply for Permanent Care, will they be able to offer continuous respite care until then? I don't know how these things work, but that could be a solution, if your finances can cope with this. You've done a wonderful job, but we can all only do our best.

Remember, when hubby has respite, there are different shifts of carers available, and they don't have to be on permanent duty like you are. It's a very hard step to take, and I agonised over it for months, but eventually I asked myself what would happen if I tried to carry on for a further week, or month, or 3 months, and I knew I just couldn't do it any longer.

And, I'm assuming, if the wheels are set in motion, and you should have a change of heart, you can't be forced to go ahead?

Thank you Scarlett. Am going to write out those questions for Monday. Wish me luck. Am going to ask for 2 weeks respite. I believe sorting out permanent care is complicated and find it impossible to do eg go to appointments etc. am desperate for people to help me but there is no one around. It is sad but I look forward to TP' replies as they bring sanity in my life and great to get support here. I think I am letting T down and it is scary trying to make decisions for him. It seems so unfair on him.

Am doing the Dementia course with Futurelearn. I do this when T is asleep.

Loads of thanks,

Aisling

 

[Aisling]

hi everyone,

Just a thought. Am not trying to moan...... Have done enough of that and you all have been so kind to me. Thank you.

I often thought, I understood what loneliness is about but for the past week especially today I now know what it is. I hope and pray that no one has to experience that deep loneliness that I have been experiencing for the past week especially today.

Blessings and strength to everyone.

Aisling

Ps. A note of hope..... In the depts of L today, I got courage and contacted a friend. That friend ( bless him) helped me.

 

[Casbow]

hi everyone,

Just a thought. Am not trying to moan...... Have done enough of that and you all have been so kind to me. Thank you.

I often thought, I understood what loneliness is about but for the past week especially today I now know what it is. I hope and pray that no one has to experience that deep loneliness that I have been experiencing for the past week especially today.

Blessings and strength to everyone.

Aisling

Ps. A note of hope..... In the depts of L today, I got courage and contacted a friend. That friend ( bless him) helped me.

So pleased you contacted a friend. You really need someone even if they only call in for an hour or so once a week. I have a wonderful next door neighbour who gives me a call at least once a week. She works full time and has teenage children to care for but her chats are invaluable. Also a couple of friends that phone or call in. No-one stays much more than an hour as OH doesn't like having people in the house and can be very agitated and sometimes quite rude. But it breaks the time up and to have someone to talk to is a lifesaver. I hope you get help soon.xxxxx

 

[LadyA]

Aisling, the full time care here differs from the UK model in some ways, one of which is that in UK, if I have it right, there are Care Homes (for people who can't live alone, but don't need nursing care) and nursing homes, for people who's condition is such that they need more care than a Care Home gives. Here, we just have Nursing Homes. They have to have nursing staff on duty, 24 hours a day. Once the person moves to a nursing home, then, as the Manager of William's place put it, it is their HOME until they die. They all provide end of life care - unless there is, in the end, some medical reason the person needs to be in hospital.

You have not failed, Aisling. We've all fought the Dementia War on behalf of our loved ones held captive - but we were never going to win. We all knew that from the start. All we were doing was putting up a damned good fight anyway, because maybe by us fighting, ground won't be lost so fast. And we can't do nothing.
There is no place for guilt in losing a battle that you had no hope of winning. Rather, you can (when you get enough rest, and the dust settles), say that you may have lost - but you went down fighting.

 

[Aisling]

So pleased you contacted a friend. You really need someone even if they only call in for an hour or so once a week. I have a wonderful next door neighbour who gives me a call at least once a week. She works full time and has teenage children to care for but her chats are invaluable. Also a couple of friends that phone or call in. No-one stays much more than an hour as OH doesn't like having people in the house and can be very agitated and sometimes quite rude. But it breaks the time up and to have someone to talk to is a lifesaver. I hope you get help soon.xxxxx

Thank you Casbow.

Aishling

 

[Holly73]

Thank you Scarlett. Am going to write out those questions for Monday. Wish me luck. Am going to ask for 2 weeks respite. I believe sorting out permanent care is complicated and find it impossible to do eg go to appointments etc. am desperate for people to help me but there is no one around. It is sad but I look forward to TP' replies as they bring sanity in my life and great to get support here. I think I am letting T down and it is scary trying to make decisions for him. It seems so unfair on him.

Am doing the Dementia course with Futurelearn. I do this when T is asleep.

Loads of thanks,

Aisling

Dear Aisling

I am a TP novice and don't have any words of wisdom but just wanted to say hello again and that I'm thinking of you. You were so kind to reply to my first post and it's immensely touching that someone with so much on their plate took the time to write to a stranger with some words of support. I've read many of your posts and you have my admiration (as do so many of your fellow TP friends) for all that you do and all that you cope with. I often feel overwhelmed by my situation with dad and can only imagine how much more of a struggle it is for you and others whose partners
suffer this terrible condition. My husband has Parkinson's and I lost my lovely mother to cancer two years ago but seeing my dad's decline into dementia is something else. It's clear that you are full of love for T and your care has been exemplary. Be kind to yourself.

 

[Aisling]

Aisling, the full time care here differs from the UK model in some ways, one of which is that in UK, if I have it right, there are Care Homes (for people who can't live alone, but don't need nursing care) and nursing homes, for people who's condition is such that they need more care than a Care Home gives. Here, we just have Nursing Homes. They have to have nursing staff on duty, 24 hours a day. Once the person moves to a nursing home, then, as the Manager of William's place put it, it is their HOME until they die. They all provide end of life care - unless there is, in the end, some medical reason the person needs to be in hospital.

You have not failed, Aisling. We've all fought the Dementia War on behalf of our loved ones held captive - but we were never going to win. We all knew that from the start. All we were doing was putting up a damned good fight anyway, because maybe by us fighting, ground won't be lost so fast. And we can't do nothing.
There is no place for guilt in losing a battle that you had no hope of winning. Rather, you can (when you get enough rest, and the dust settles), say that you may have lost - but you went down fighting.

Thanks again Lady A. From my experience of both in Ireland, I want T to be cared for in a public nursing home. There is one he really likes and is happy. He is there for respite this week. It is a beautiful old building and warm atmosphere with highly trained staff.

Am wrecked from meetings today but met great people TG. Apparently T is no longer on the Liason Nurses list!! He will be assigned to someone else. Just came up today. I won't miss her anyway. Let's see what replacement is like?! I thought I would have been informed!! Ever the optimist!! Jigs and roundabouts!

Aisling xxxx

 

[LadyA]

Thanks again Lady A. From my experience of both in Ireland, I want T to be cared for in a public nursing home. There is one he really likes and is happy. He is there for respite this week. It is a beautiful old building and warm atmosphere with highly trained staff.

Am wrecked from meetings today but met great people TG. Apparently T is no longer on the Liason Nurses list!! He will be assigned to someone else. Just came up today. I won't miss her anyway. Let's see what replacement is like?! I thought I would have been informed!! Ever the optimist!! Jigs and roundabouts!

Aisling xxxx

Inform you?! You must be joking! I live on a very narrow country road. When I first tried to get the PHN for William, years ago, after many phone calls and referrals getting me nowhere, because the nurse for one district (covering my nearest village, less than 3 miles away) said I wasn't in her district, but was under the next town, 7 miles away. Eventually, I managed to get the nursing supervisor, when the PHN for both these districts were there in the office - and I could hear the row they had about who's district I was in! The nearest nurse insisted I wasn't "hers" because I lived on the wrong side of the road! And it turned out she was right! They had to consult their map, but the districts were divided in the middle of my narrow road! So I ended up having to trot to the next town for William's incontinence pads every month! And in the space of about eighteen months, our PHN was changed five times.
However - sometimes, a change of personnel is a good thing! Good luck with the new nurse.

 

[Aisling]

Inform you?! You must be joking! I live on a very narrow country road. When I first tried to get the PHN for William, years ago, after many phone calls and referrals getting me nowhere, because the nurse for one district (covering my nearest village, less than 3 miles away) said I wasn't in her district, but was under the next town, 7 miles away. Eventually, I managed to get the nursing supervisor, when the PHN for both these districts were there in the office - and I could hear the row they had about who's district I was in! The nearest nurse insisted I wasn't "hers" because I lived on the wrong side of the road! And it turned out she was right! They had to consult their map, but the districts were divided in the middle of my narrow road! So I ended up having to trot to the next town for William's incontinence pads every month! And in the space of about eighteen months, our PHN was changed five times.
However - sometimes, a change of personnel is a good thing! Good luck with the new nurse.

Thank you. Am smiling for the first time today

Aisling

 

[triumph25]

Ailing many of us on TP will know exactly how you feel. I just wanted to say you've done a marvellous job. I was told by OH consultant that I wouldn't be able to cope with him at home in 6 months time. (that was last June) I've managed until now without respite (long story!) but finally last week I had 3 days!

I had such plans........ All the things I wanted to do & never got time for...... In the end I did nothing! I couldn't! Every time I sat down to watch a film or read a book I 'nodded' off!

Most if us are physically & emotionally wiped out!

I don't know how I'm going to manage for the next 3 months, let alone 2 years!

So, don't beat yourself up about it. Give yourself a medal & a pat on the back! Well done!

 

[triumph25]

Laugh!

By the way, just wanted to add. Last night my OH said he couldn't get into his bed.
'Why not?' Said I.

'Because there are 7 people in there!' He replied.

Now, I said, I've heard if 3 in a bed, but not 7! That's just plain greedy!

And, he laughed! It was so lovely just to hear him laugh!

 

[esmeralda]

So sorry to hear you have been feeling so low and alone Aisling. It's hard to have to cope with everything and have these worries about the best thing to do for you husband. We do go through so many emotions. I am really hoping you get the respite and advice and help you need. Glad LadyA is on hand to help you with the system in Ireland. Big hugs and love to you.
xxxxxxxxxxxxxxxxxxxxxxxxx

 

[Spamar]

Triumph,

 

[Slugsta]

I am so sorry to hear your distress Aisling (((hugs))). Your love for T shines through your posts - but so does your fear and exhaustion. I'm sorry I cannot offer any helpful advice, I'm still new to this dementia lark myself.

 

[Aisling]

I am so sorry to hear your distress Aisling (((hugs))). Your love for T shines through your posts - but so does your fear and exhaustion. I'm sorry I cannot offer any helpful advice, I'm still new to this dementia lark myself.

Hi Slugsta,

Love is being extremely tested at the moment. Not politically correct I know but this is our safe place T.G.

Thank you for replying. I appreciate it very much.

Aisling