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Can't take much more, Dad nor me

Rosie Webros

Registered User
May 8, 2013
181
Oh Stephanie, like so many others on here, I do know exactly what you are going through. It is an awful time you are having at the moment, but it will get better.

When my dad was in hospital for nine weeks, we felt just the same. We were told how expensive the beds were in the hospital and they found us a 'step-down' place not far away. The problem was that we didn't want to keep moving dad. We knew he had to go into a home because my sister and myself couldn't look after him anymore, it was too difficult. But we felt so pressured into finding him somewhere. We thought that if we put dad into the step-down place, then he would have to move again later on and we didn't want that.

I was at the end of my tether a few times in those 9 weeks. I would go into a home that wasn't as bad as the last one I had seen, and sometimes I would think I was being too 'picky'. Perhaps it didn't smell as much as the last one, or the carers didn't seem quite so bad as the last one. Perhaps I shoud lower my expectations and put dad into that one. But then I would think, no, my dad deserves better than that. Luckily, I did find a really lovely place and dad is settled now.

You feel as if there is no light at the end of the tunnel sometimes. But you will get there Steph. Like others have said, it is true in my case that you can go then and sit with your dad and have real quality time with him. Even if it is only having a cup of tea and sharing a box of chocolates with him.

I do wish you all the best Steph and you are such a caring daughter, I am sure you will do the best for your dad (and mom). You will get there in the end, I truly didn't think I would, but I live to tell the tale!

Take care, Rosie xx
 

KentJude

Registered User
Jul 2, 2012
177
Maidstone
Oh Stephanie, I can't add anything of more value than what others are saying but I too feel for your situation so much. I hope you can get dad into a superb care home as soon as possible. He deserves the best and you'll only be happy with the best I know.

Thinking of you.

Jude xx
 

Laine5

Registered User
Jun 15, 2013
44
Cannot add anymore, thinking about you and the awful situation you are in, sitting here waiting for the long overdue bowel movement that is imminent and hoping Mum will keep the bigger pad on that she hates.
The right Care home is out there, hope you can find it soon
 

lilysmybabypup

Registered User
May 21, 2012
1,263
Sydney, Australia
Thanks turbo, you did a marvellous job for your mum. I'm so glad she's somewhere safe and comfortable, a few weeks sounds scary. We were told by the SW that he's in an acute care ward and needs to be out within 2 weeks, and they don't have another place for him since there's a big sign on the ward doors saying to keep closed because of wandering patients. I've rarely seen them closed though.

Thanks for the encouragement and hope, Rosie. Again, 9 weeks seems like such a marathon to be in hospital. I think Dad would actually pass away in that time, he's barely eating at all. I hope we can get him somewhere he will settle and become settled and as happy as he can be.

Jude, Izzy and Laine, you are all keeping me so hopeful and it helps remarkably to have your support and caring words.

It was my poor sister's turn to face a horrid day today. He did agree to a shower but after a while in the armchair he needed to pass urine, stood up and my sister tried to get the bottle but he was obstructive and got some on the clean gown and the outside of the pad. Then he refused to allow them to change him, she said he needed it because he had "tea" all down his clothes but refused to believe they were wet. He wouldn't eat dinner, was so difficult, she waited a while then tried again to get him changed but he still refused so she became cross and said he was being mean and unreasonable to everybody. It made no difference, as it wouldn't, given his inability to reason, she told the nurse she was leaving, told Dad she was going to the toilet, then he said, "Ok Mummy," - a knife through the heart. She got in her car and texted to me how horrible she felt walking out on a father who would have done anything for her and loved her dearly, how much she hated herself, and how worried she was about him being left in that state all night because he wouldn't let anybody do anything. She said she felt sick driving away from her father. I said we have to hate the dementia, not the person and not ourselves, and, as she told me once, leaving him while he's being awful is much easier than when he's terrified, crying, and won't let go of your hand.

Hate this disease. Thank you dear friends.

Stephanie, xxx
 

janma221

Registered User
Apr 23, 2013
284
Powys
Oh Stephanie I really wish I could say something to make things better for you all but I don't have the right words. Can only say I am thinking of you and really hoping that things get easier for you and your lovely family and send big virtual hugs to you.
Jan xx
 

at wits end

Registered User
Nov 9, 2012
753
East Anglia
Dear Steph, you make my problems seem like dots in the sky. What an awful situation you are in, it really is a 'no-win' .

I hope you can find somewhere nice for your Dad, it can be easier than this, really.

xxx hugs for you xxx
 

lilysmybabypup

Registered User
May 21, 2012
1,263
Sydney, Australia
At wits end, I believe there are no dots in Dementia, just a few tiny degrees. I too read of people who wake to a morning of cleaning faeces from the walls and floor, or being told how much they're hated, when they're giving up everything to care for someone. I too believe my problems are tiny in comparison, so I suppose this forum serves to keep us aware that our lot is better than some and worse than others, but everyone is just treading water in a very rough sea.

Jan, Pross and at wits end, you are very kind and I feel each wish and hug, and I send each one of you a hug back for all the dark places in which you find yourselves.

Stephanie, xx
 

LYN T

Registered User
Aug 30, 2012
6,960
Brixham Devon
Dear Stephanie

I've not posted on this thread recently; this isn't because I haven't been reading it (I have ) but I didn't want to tell you that your poor Dad's downturn has been almost the same as my OH's. This was when the medics weren't sure if it was a downturn or delirium.Now it seems that it is a downturn and I feel so sad for you.

Your Mum is being very honest about knowing she can't cope with the home caring role, and fair play to her. It's a difficult thing to accept. The best advice I can give (as you don't have many hours left in the day) is to do a lot of research for a CH by phone.SW's are rubbish at sorting this out-I could list the limitations of Pete's SW but that would start a new thread.List the priority needs for your Dad. Pete's were a high carer to resident ratio.(SW was asking me to look at 1 carer to 10 residents-totally unsuitable),a small home,(P cannot stand a lot of hustle and bustle and noise), a garden,smiling faces (P responds well as he cannot understand a lot of what is said to him) etc

Once I had phoned about 15 I had 5 to look at.So as you can see some weren't even worth visiting (time saved).All 5 I looked at without making appointments.If they don't want to let you in because of meal times etc I wouldn't be too happy.

As many Tp'ers have said look past the fixtures and fittings (I've made that mistake when P was in respite)

Good luck Stephanie and to your family.

Let us know how you get on

Take care

Lyn T
 

Mamsgirl

Registered User
Jun 2, 2013
635
Melbourne, Australia
Hi Stephanie,
have been popping in but not had time to write. Looking for care is the pits, and in my family's case I think we just had to accept at some stage, that nothing is going to be a perfect fit and as others have said, work out what our real deal breakers were.
I've included a link to a pdf that has been a good resource.
For me, it's helpful/necessary to remember that this isn't abandonment in an orphanage or giving a child up for adoption (seriously, this is what it felt like before I thought the process through. Nuts, I know :D), that I'm not handing over any control, responsibility or commitment, but augmenting available care. And although moving is disruptive, I'd have no hesitation in moving my stepfather if I thought he wasn't getting the level of care agreed on before admission to his aged care facility. When I have raised problems though, I must say the NH has been a lot more responsive than a hospital.
Good luck, dear one, it doesn't get much tougher than this,
Toni x


http://www.health.gov.au/internet/main/Publishing.nsf/Content/ageing-rescare-resentry_a.htm
 

lilysmybabypup

Registered User
May 21, 2012
1,263
Sydney, Australia
Dear Stephanie

I've not posted on this thread recently; this isn't because I haven't been reading it (I have ) but I didn't want to tell you that your poor Dad's downturn has been almost the same as my OH's. This was when the medics weren't sure if it was a downturn or delirium.Now it seems that it is a downturn and I feel so sad for you.

Your Mum is being very honest about knowing she can't cope with the home caring role, and fair play to her. It's a difficult thing to accept. The best advice I can give (as you don't have many hours left in the day) is to do a lot of research for a CH by phone.SW's are rubbish at sorting this out-I could list the limitations of Pete's SW but that would start a new thread.List the priority needs for your Dad. Pete's were a high carer to resident ratio.(SW was asking me to look at 1 carer to 10 residents-totally unsuitable),a small home,(P cannot stand a lot of hustle and bustle and noise), a garden,smiling faces (P responds well as he cannot understand a lot of what is said to him) etc

Once I had phoned about 15 I had 5 to look at.So as you can see some weren't even worth visiting (time saved).All 5 I looked at without making appointments.If they don't want to let you in because of meal times etc I wouldn't be too happy.

As many Tp'ers have said look past the fixtures and fittings (I've made that mistake when P was in respite)

Good luck Stephanie and to your family.

Let us know how you get on

Take care

Lyn T
Thanks Lyn,

You've had so much to cope with this past week so I really appreciate you taking the time to read and reply to my thread. You've given me some valuable advice and points to consider. It's also important to feel some sort of confirmation that we are making the right decision. I must admit that in the evenings when I'm back home I can't stop thinking about Dad being all alone in a hospital room and how much he must miss Mum's comforting presence, and even the cat's miaow. I know he won't be like that in a care home but it's eating away at me and I want more than anything for him to live out his days in his own home and his own bed. I'm just devastated thinking about it, and it isn't that he is so difficult or angry at home, he isn't, it's the constant care 24/7 that's required and the way it's exhausting my mum, even though I'm doing all I can to support them. I sometimes wonder whether we could handle him better if he wasn't such a tall and heavy man, while Mum is so tiny, or maybe if we had sufficient carer support to give Mum a break every day.

Is this honestly the only solution? How do some people manage to care for someone at home until the end? I'm sorry Lyn, this is so selfish of me when you're in such a painful period right now. Thanks again for your help and I hope your Pete continues to feel comfortable and cared for, and I wish you much peace.

Stephanie, xxx
 

lilysmybabypup

Registered User
May 21, 2012
1,263
Sydney, Australia
Hi Stephanie,
have been popping in but not had time to write. Looking for care is the pits, and in my family's case I think we just had to accept at some stage, that nothing is going to be a perfect fit and as others have said, work out what our real deal breakers were.
I've included a link to a pdf that has been a good resource.
For me, it's helpful/necessary to remember that this isn't abandonment in an orphanage or giving a child up for adoption (seriously, this is what it felt like before I thought the process through. Nuts, I know :D), that I'm not handing over any control, responsibility or commitment, but augmenting available care. And although moving is disruptive, I'd have no hesitation in moving my stepfather if I thought he wasn't getting the level of care agreed on before admission to his aged care facility. When I have raised problems though, I must say the NH has been a lot more responsive than a hospital.
Good luck, dear one, it doesn't get much tougher than this,
Toni x


http://www.health.gov.au/internet/main/Publishing.nsf/Content/ageing-rescare-resentry_a.htm
Thanks Toni, it sure does feel like an abandonment, doesn't it? I think for me, if Dad was oblivious to us and didn't remember that connection, maybe it would be simpler. He is always so overwhelmed when one of us goes to the hospital, and I know he is a little like a frightened child, always checking at night that Mum would be beside him. How can I think of him spending his nights alone? I'm sorry, I know I just keep saying the same things all the time but it is killing me inside. I start to think that I'm being selfish and should move in with Mum to help care for Dad so he can stay home but then I try to think how my husband would cope, how we would manage that way.

It really does not get any tougher than this, and hospitals really are horrible, horrible places for dementia. Thanks for the very useful link, I've looked at that site quite a lot but I hadn't seen that section, probably because I didn't ever think it would happen.

Stephanie, xxx
 

Mamsgirl

Registered User
Jun 2, 2013
635
Melbourne, Australia
There are more ways than one to soothe a frightened child.....

I think for me, if Dad was oblivious to us and didn't remember that connection, maybe it would be simpler. He is always so overwhelmed when one of us goes to the hospital, and I know he is a little like a frightened child, always checking at night that Mum would be beside him. How can I think of him spending his nights alone? I'm sorry, I know I just keep saying the same things all the time but it is killing me inside.
Oh Stephanie this is awful for you.
I don't for a second think you'd be in any less of an agony of protectiveness if your father stopped being comforted by your presence, in my experience this just intensifies the feelings, and I sense a kindred spirit in you:) Can I presume to try to reassure you a little about your Dad's overwhelming angst at the moment? It does seem that dementia's been kicking goals during the hospital stay, but that doesn't mean he won't claw back some points after discharge. Obviously everyone's different, but from what I've seen, read and heard, the fearfulness people with dementia suffer in a hospital setting is managed better and reduced in an aged care setting. My dear stepfather's still a bit like a moody teenager with myself and Mum sometimes:) but you know, he's not frightened, and this man's PTSD nightmares (Korean War Veteran) have plagued him for nearly 60 years. While he still regularly protests about "being stuck in here", at some level all the (arbitrary, willful and malicious;)) routines that make up his day now, are providing a framework for a measure of calmness and peace of mind he could never enjoy at home, conscious of his needs grinding down the health of the love of his life.
You must be so bewildered at the moment, something has to change for the better.
At 2.50am, I hope you're sleeping as I write,
Toni x
 

60's child

Registered User
Apr 23, 2013
588
suffolk
Stephanie
I do so wish that you, your Dad and your family were not having to go through all this. I wish I could say something that would help you feel better. Just know that there are many people here in the UK thinking of you all.
Dee xx
 

lilysmybabypup

Registered User
May 21, 2012
1,263
Sydney, Australia
Hi Toni, you're worse than me, that's very late to be awake, yes, I was finally asleep when you were writing. I hope everything is ok with you and you weren't awake with some problems or anxiety.

Yes, I know an aged care home will have to be a mammoth improvement on hospital, couldn't be worse. It's hard trying to consider what will be best for Dad, the closest home has an excellent reputation but it's Russian, accepts all people, but I wonder whether it would feel a little alien for him. A couple of others that seem to have specific programs addressing dementia are a little further away and it will be a bit of a challenge getting Mum there since she can't drive and public transport will be too complicated. If she went in every second day it would still place quite a burden on me again to provide transport. It's so right that you don't stop the caring role, it just changes.

I'm glad your dear SF is happy and settled, he was quite unwell recently, I hope he has improved. I'm being like Dad with my denial of what must be, today is the ACAT to approve him for permanent care. He had one not long ago which approved him for an EACHD package they never got to use! If that had actually provided the hours and times of care they purport to, it may not have come to this so soon.

Feeling overwhelmed with the responsibility of finding him a suitable place and there are several homes closer to Mum that the SW doesn't really recommend, not sure if we should still bother seeing them, she has suggested a few based on comments of clients who have only been happy, and had no complaints.

A big and challenging week for our family. I wonder what I will find when I get to the hospital this morning?

Stephanie, xxx
 

lilysmybabypup

Registered User
May 21, 2012
1,263
Sydney, Australia
Hello dear friends, today has been a good day in some ways, lovely nurse his morning, experienced with dementia, managed to get him showered and dressed before I arrived at 9, he was sitting up all fresh in the chair and cheery. She said she was determined to get his shower and tablets done and was persistent, if he wasn't too happy she just came back a few mins later. Makes a difference when they're experienced. Dad then fell into such a deep sleep, could barely rouse him and he was answering me with his eyes closed. Wondering if the Risperidone is making him just a bit too out of it, not the best solution but he was so agitated before and seems less so now.
He ate quite a few spoons of lunch, with eyes closed. We had the final assessment for approval for residential care, just a formality but it's done

Called a few homes today, nobody has any vacancies but asked us to get SW to fax through his client record with the approval and we are going to see 2 tomorrow, and one on Wednesday. One is around the corner from Mum but still 2 bus rides, and a long waiting list. I've had conflicting stories, assessment person said homes will try harder to find a place if he's in hospital and it makes a request. He also said if we put him in a temporary home and look for a better one, the new one is less likely to take him since he already has a place. Whereas if he's in hospital and has nowhere to go they need to be more accommodating. SW said she has no power at all and it's up the home. Don't know who to believe. The good places are at least half an hour away from Mum and don't know if I'm doing the wrong thing looking at them.
Any bright suggestions, you clever people?

Stephanie, xxx
 

Moonflower

Registered User
Mar 28, 2012
775
I'm sure somebody more expert will be along soon, but here goes:
I wouldn't be too put off by long waiting lists. Some people go on waiting lists and then say "not yet" when a place comes up, so the list may not be as long as it seems. Your dad might also leapfrog people who don't have all their assessments/funding in place.

For me, mum's care home being very close so that I could visit every day was key, at least in part because I had to persuade her to move there. In your situation, I think I'd put your dad's needs first - if you can find somewhere with kind, experienced staff who can make him as content as he can be, then I'd put that before somewhere less good but closer.
You can then work out how to deal with the transport issue.

I think you'll know the right place when you see it - I hope so anyway.
 

turbo

Registered User
Aug 1, 2007
3,851
Hello Stephanie, we found that although all of the care homes we had shortlisted (well my sister did most of the work as I am a long distance away) had long waiting lists it was worth calling every day because some people have their names on the list although they no longer need a place at that particular home or they don't want a place at that particular time. I hope that you are able to find a place soon.
I hope that lovely nurse is on duty again to look after your dad.


turbo