End of respite approaching

[Cazb85]

Thanks to the moral support on here I managed to get dad in respite and he has been in there two weeks tomorrow with one more week to go.

He took a while to settle and I have kept my distance as if I phone or go there he says he is going home and he has had enough. He says it is a rubbish job and he isn't being paid. (He says the same at home!) yesterday he told them he was going to the police as they don't like him anymore so they rung me saying he wanted to have a chat and he was fine.

The staff are great and seem to love him. They say he is eating well which he wasn't at home and he is chatty and not aggressive at all.

Here is the tricky bit and I know this has been discussed on here. For the last two weeks I have had my life back. I have slept and even managed to see a few friends. I am 31 on Sunday and the thought of going to dinner with my mates and not having to rush back is to be honest, amazing. The guilt I feel is immense though. He is somewhere that isn't home and every time I speak to him he wants to home. However I am dreading him coming back and I am really considering if it is better if he becomes permanent. This was in the back of my mind but it has been him being safe and fed well that makes me think he is probably better to remain there.

if I let him come home and then want to put him back in a home I might face a resistance from him. I was debating this as a local home which is good is cheaper but then he is used to staff where is his now and he will kick off if I try to make him go into another home.

I just don't know what to do and the guilt is killing me.

 

[fizzie]

I think you've answered your own question - you've said how much better he is (apart from the fact they've given him a low paid rubbish job lol) where he is now - eating better, well liked etc and the amazing thing is that he has settled so well and so quickly! You are so young to 'give up' your life to caring and you can be just as good, if not better, carer whilst he is in the home. If he has settled you will be able to visit regularly, make sure the care he is getting is really good, and have some real quality time with him. If you have him home will you resent him taking away the 'new life' you have found? If you will then you won't be able to care well, you obviously love him very much and want the best for him - perhaps this is the best for him and for you? xx

 

[Cazb85]

I think you've answered your own question - you've said how much better he is (apart from the fact they've given him a low paid rubbish job lol) where he is now - eating better, well liked etc and the amazing thing is that he has settled so well and so quickly! You are so young to 'give up' your life to caring and you can be just as good, if not better, carer whilst he is in the home. If he has settled you will be able to visit regularly, make sure the care he is getting is really good, and have some real quality time with him. If you have him home will you resent him taking away the 'new life' you have found? If you will then you won't be able to care well, you obviously love him very much and want the best for him - perhaps this is the best for him and for you? xx

Thanks Fizzie. I spoke to one the senior care workers at the home yest and she said in her opinion (and I didn't have to listen to her she said) she has worked in the community and in care homes. If dad was just 'old' then she would think that being at home was the best thing but he has progressive dementia so his safety could be in jepordy. She could tell he wanders as he walks up and down the corridor at the home so used this as an example. He is much safer in the care home.

I also spoke to deputy manager at the Azheimers Society in dads local authority and she has met dad and sends her colleague round once a week for a chat with him. She said it is up to me and I have to think of myself now in making this decision.

I am 80-90% sure he should stay there. Next thing is sorting out the house to rent/sell. it is all life changing massive decisions that are having to be made all at the same time!!!!

 

[Aisling]

Thanks to the moral support on here I managed to get dad in respite and he has been in there two weeks tomorrow with one more week to go.

He took a while to settle and I have kept my distance as if I phone or go there he says he is going home and he has had enough. He says it is a rubbish job and he isn't being paid. (He says the same at home!) yesterday he told them he was going to the police as they don't like him anymore so they rung me saying he wanted to have a chat and he was fine.

The staff are great and seem to love him. They say he is eating well which he wasn't at home and he is chatty and not aggressive at all.

Here is the tricky bit and I know this has been discussed on here. For the last two weeks I have had my life back. I have slept and even managed to see a few friends. I am 31 on Sunday and the thought of going to dinner with my mates and not having to rush back is to be honest, amazing. The guilt I feel is immense though. He is somewhere that isn't home and every time I speak to him he wants to home. However I am dreading him coming back and I am really considering if it is better if he becomes permanent. This was in the back of my mind but it has been him being safe and fed well that makes me think he is probably better to remain there.

if I let him come home and then want to put him back in a home I might face a resistance from him. I was debating this as a local home which is good is cheaper but then he is used to staff where is his now and he will kick off if I try to make him go into another home.

I just don't know what to do and the guilt is killing me.

Dear Cazb,

Believe me I understand. Your Dad is happy and safe. You are an amazing daughter. Now, you know your own mind and you are thinking what is best for your Dad. Sweetheart, you know what is best, he has settled well so make the decision to allow him to stay in that caring environment. You will still be his brilliant daughter by visiting etc.

You are so young and you should be able to enjoy yourself too. It is difficult and sad but kick that quilt to the touch line and leave it there. Happy birthday on Sunday.

Aisling (Ireland) xxxxx

 

[Amy in the US]

I just wanted to say, you sound like you're doing a great job of taking care of your father. It's a big responsibility and it's not easy. No matter where he lives, you have a lot of work to do and everyone here knows how difficult it is, to be a carer.

Whatever you decide, I hope you are able to get some support for you. You can't live the rest of your life crushed by guilt all the time. Please remember that your dad, if he were well, would not want you to be miserable and unhappy and have no life of your own.

I do want to mention that, while I'm sure that some of your dad talking about home does mean he wants to leave/be at home, many people with dementia talk about wanting to go home, often even when they are at home. The "going home" talk isn't always about a real place, but more about wanting to be someplace, or some time, where (and when) they felt safe, or fulfilled, or in control. Try to remember that at least some of "going home" is the disease talking.

I apologise for the following tangent, but I want to tell you about my mother. She is 73 and has Alzheimer's and no short-term memory. She has been in a care home near me for the past year. Prior to that she lived 100 miles away, by herself, with no support or services. She claimed that she was fine, that she was happy being left alone, and that it was what she wanted.

The reality was: not eating, not taking meds correctly (with bad consequences), driving when she shouldn't have been and having 2 accidents (that I know of), not sleeping, in a constant state of anxiety/panic/distress, not bathing, in pain, spoiled food in the fridge, not washing sheets or towels or clothes, not cleaning anything and living in filth, not being able to pay bills, handing money over to "charities" over the phone and in person, isolated (sometimes not seeing another person for days), afraid to go out, getting lost, not sleeping, mysterious injuries (probably from falls) and finally an episode of wandering, disoriented, in the cold, hallucinating, and injured. This is what led to her being sectioned and then the move to the care home.

I had no choice in the matter so it was an "easy" decision. I also had a very short time to find a suitable care home near me. The social worker told me many helpful things, about moving her and what kind of care was needed and to move her closer to me (I'm an only child and there is no other family besides me).

But what I wish someone had told me was: my mother would be much better off in the care home, than living at home.

She has thrived at the care home, regained the lost weight, made friends, has social contact everyday but privacy when she wants it, goes to activities, and has outings at least twice a week. She gets the proper medications at the proper times and is in much less pain. Her anxiety is 90% better and she sleeps better. She is safe and warm and well cared for. Her GP, neurologist, eye doctor, podiatrist, dentist, physical therapist, psychologist, and hairdresser all come to the care home, so it's cut way down on the dreaded trips to the doctor. They had a lovely Christmas party for the residents and families and although it's not fancy, they try hard to provide good care and activities for everyone. I can sleep at night after years of worrying if she would get in an accident or burn the building down, and I no longer have to drive 100 miles each way to take her to the doctor every week.

And of course the terrible thing with dementia (whatever type) is that it is a progressive disease. Eventually the person with dementia gets worse and needs more care. Impossible to know when, but it will happen.

So if and when a care home is right for your dad, please know that it could be okay, it could work out, it could even be better than you think.

I, and many others here, have been there with making these impossible decisions for someone else, and dealing with the house, the stuff, the PoA, the paperwork, the bills, it's a massive job, it really is. Please don't sell yourself short or disable yourself with guilt. Please do come here to TP for support and suggestions. Please remember you're not alone here, and TP is always open.

Best wishes to you and your dad.

 

[6FNAUTICLUB]

I just wanted to say, you sound like you're doing a great job of taking care of your father. It's a big responsibility and it's not easy. No matter where he lives, you have a lot of work to do and everyone here knows how difficult it is, to be a carer.

Whatever you decide, I hope you are able to get some support for you. You can't live the rest of your life crushed by guilt all the time. Please remember that your dad, if he were well, would not want you to be miserable and unhappy and have no life of your own.

I do want to mention that, while I'm sure that some of your dad talking about home does mean he wants to leave/be at home, many people with dementia talk about wanting to go home, often even when they are at home. The "going home" talk isn't always about a real place, but more about wanting to be someplace, or some time, where (and when) they felt safe, or fulfilled, or in control. Try to remember that at least some of "going home" is the disease talking.

I apologise for the following tangent, but I want to tell you about my mother. She is 73 and has Alzheimer's and no short-term memory. She has been in a care home near me for the past year. Prior to that she lived 100 miles away, by herself, with no support or services. She claimed that she was fine, that she was happy being left alone, and that it was what she wanted.

The reality was: not eating, not taking meds correctly (with bad consequences), driving when she shouldn't have been and having 2 accidents (that I know of), not sleeping, in a constant state of anxiety/panic/distress, not bathing, in pain, spoiled food in the fridge, not washing sheets or towels or clothes, not cleaning anything and living in filth, not being able to pay bills, handing money over to "charities" over the phone and in person, isolated (sometimes not seeing another person for days), afraid to go out, getting lost, not sleeping, mysterious injuries (probably from falls) and finally an episode of wandering, disoriented, in the cold, hallucinating, and injured. This is what led to her being sectioned and then the move to the care home.

I had no choice in the matter so it was an "easy" decision. I also had a very short time to find a suitable care home near me. The social worker told me many helpful things, about moving her and what kind of care was needed and to move her closer to me (I'm an only child and there is no other family besides me).

But what I wish someone had told me was: my mother would be much better off in the care home, than living at home.

She has thrived at the care home, regained the lost weight, made friends, has social contact everyday but privacy when she wants it, goes to activities, and has outings at least twice a week. She gets the proper medications at the proper times and is in much less pain. Her anxiety is 90% better and she sleeps better. She is safe and warm and well cared for. Her GP, neurologist, eye doctor, podiatrist, dentist, physical therapist, psychologist, and hairdresser all come to the care home, so it's cut way down on the dreaded trips to the doctor. They had a lovely Christmas party for the residents and families and although it's not fancy, they try hard to provide good care and activities for everyone. I can sleep at night after years of worrying if she would get in an accident or burn the building down, and I no longer have to drive 100 miles each way to take her to the doctor every week.

And of course the terrible thing with dementia (whatever type) is that it is a progressive disease. Eventually the person with dementia gets worse and needs more care. Impossible to know when, but it will happen.

So if and when a care home is right for your dad, please know that it could be okay, it could work out, it could even be better than you think.

I, and many others here, have been there with making these impossible decisions for someone else, and dealing with the house, the stuff, the PoA, the paperwork, the bills, it's a massive job, it really is. Please don't sell yourself short or disable yourself with guilt. Please do come here to TP for support and suggestions. Please remember you're not alone here, and TP is always open.

Best wishes to you and your dad.

I have to agree with everything you say here, mum has been in Care Home for four weeks now, she has always said she would never go into one but was so poorly after Xmas, very anxious, her dementia seemed to be progressing so quickly, she kept saying she was so ill etc, she had a fall, walking around with a saucepan on her trolley as she felt sick all the time. we decided Respite was the only answer to give us all peace of mind. iVe posted on here before that within days, she was a changed woman, looked better, dementia seemed to disappear, eating well etc, only thing that troubles her now is the cost as she is self funding, but we are now comtemplating renting out her bungalow to help meet some of the cost as the family and she feels she is safer there, of course her dementia is still there but because she has no worries, knows she is safe, everyone is happy.

I know our story is not as complex and as sad as some on here but when either Mum or Dad is happy in care home then you know it's the right place, you will always feel quilty but we do what we do for their happiness and safety.

 

[BillBRNC]

I you have the option, I think you would be well advised to let your dad stay in the care facility. Several decades ago, my mom moved into a very nice facility when her Alz got really bad. She did fabulous there, made lots of friends, and in fact thought she was at home. We visited her almost every day, as the place was only about a mile from our house. We took her out for dinner or an outing from time to time, but mostly just visited her there. People there envied her because she had family who came and visited her all the time, and that was a rare thing for most of the folks there. Heck, we even included other residents in some of our gatherings with my mom. Now that I have early onset Alz like my mom did, I've told my wife to not hesitate to put me in such a place when if it becomes too difficult for us both to enjoy living at home together, because she could leave the hard work to professionals and she could spend her time with me doing things we like to do, or at least enjoying the moment. Don't think you are doing something bad by letting your father stay there. He'll be better for it, and you will as well. Good luck.

 

[Bessieb]

I think you've done the hard bit in many ways...you have moved your Dad into a CH, albeit on respite, and he has settled. It probably wouldn't be in your Dad's , or your, interests, to go through that again. It sounds like making a move to it being permanent is probably a good idea.

I know exactly how you feel though. I went through the same thing with my parents last July. They were on respite for two months before I could bring myself to make the decision to make it permanent. But I did because in my heart of hearts I knew that things weren't going to get better and I would face a battle to get them back into a CH again if I moved them back home. I also knew that the CH were doing a better job at caring than I was.

I feel like I've got my life back after two years of caring - as have my husband and children - and my parents are safe and cared for . I know it's horrible time having to make the decisions but you have to think of everybody, including yourself.