Decision time?

[count2ten]

Am I being unkind by leaving my mother living on her own? She has some nice carers, but her memory has just plummeted in the last couple of weeks - I thought it was to do with the weather but I'm really worried that she has taken another step down and lost a bit more of her mind. Her memory is now so bad, she is asking the same question over and over, but then says "oh, what on earth is wrong with me?" and then seems to remember whatever she was asking, then after another couple of minutes says something else bizarre then before I can respond she will say " Oh, of course this is my house" , or " of course you don't live here, silly me". etc. It's really heartbreaking, and she keeps phoning me late at night because she's read something somewhere and thinks someone is taking her house away - and I know it's for reassurance, so if I can't drive over there for some reason I spend all night worrying about her and feeling guilty for making her live on her own. If my partner is over for the night he will go and see her and she feels much better having a man in her house. I can';t have her live with me unless I get some serious alterations done, downstairs bathroom for a start. I don;t want her ending up in a care home, but I just don;t think it would work if we lived together. My life is taken up with her most of the time now, and I don;t think I would get a moment's freedom or rest - she is highly anxious, has always wanted to know where I am and who I'm with, and I think it will be so much worse as the dementia gets worse. I am tearing my hair out with worry over this - I keep crying, I'm drinking every night just to numb the thoughts out of my mind, I'm constantly on edge waiting for the phone to ring or for the carers to phone me with some problem. How long can this go on - I just don;t know how this will all end.

 

[Cloverland]

I think you need to see your gp and explain all to him/her. I love a drink but it won't numb your thoughts, sorry if that seems harsh but drinking is not the answer. A gp can give you something less harmful but will work to 'numb' your thoughts. They can give you beta blockers or zopiclone, they will know what to prescribe for you.

Take a step back perhaps put your mum in for some respite, that will give you peace of mind for a week or two. Respite can be for carers as much as it is for the patient. If your mum goes in for a couple of weeks you can still visit and tell her she is on holiday.

Don't say no to a care home, they are not all bad.

 

[Jessbow]

I never wanted my Mum in a care home either, and would have cared for her until the bitter end...except a physical problem appeared and made it really unsafe for her to be alone at all, let alone any length of time.

Like you, we couldn't have her at out house, nor was there room for us at her bungalow. I was very close to leaving OH at our house and sleeping at Mums before my ''No, come on.....' thought kicked in.

I wouldn't say Mum enjoyed the nursing home - but she certainly didn't hate it.
she didn't have the ability to join in with activities and having sat at home alone for a year, just watching TV, never changing the channel, or doing anything for herself, I came to the conclusion that she's be as happy doing the same in a room in a nursing home. In the event, she was moved from hospital into a nursing home, and it wasn't really what I wanted but....

Much to my surprise, once she was there, she didn't want to be in her room, wanted to be with others, ate in the dining room and preferred to sit in the lounge. She didn't really communicate with others but seemed to enjoy watching.

It gave me such peace of mind. I had to ride through the guilt, and the sadness- I'd move 60 miles to be with her and care for her, but she'd been placed 20 miles away, do-able but no really near enough.

Do consider residential care both for you and for her- do a week or maybe two in respite, get yourself a break and see how you feel

We carers are as important as those we care for, don't forget

 

[Pickles53]

I would echo a lot of what Jessbow said. My mum constantly said she hated being alone at home after her mobility got so bad that she was afraid to step out the door, and we were very worried about her too. There was no practical way she could have lived with us, or vice versa.

She wasn't happy in the care home, but she was much more comfortable, safe, and could see all of us a lot more often as her own home was a long way from us. So don't rule it out completely. Of course nobody wants to go into a care home if they are well enough to be at home, but that's not the situation. You have to choose carefully, but far better to be in a safe caring environment than struggling at home.

 

[count2ten]

I never wanted my Mum in a care home either, and would have cared for her until the bitter end...except a physical problem appeared and made it really unsafe for her to be alone at all, let alone any length of time.

Like you, we couldn't have her at out house, nor was there room for us at her bungalow. I was very close to leaving OH at our house and sleeping at Mums before my ''No, come on.....' thought kicked in.

I wouldn't say Mum enjoyed the nursing home - but she certainly didn't hate it.
she didn't have the ability to join in with activities and having sat at home alone for a year, just watching TV, never changing the channel, or doing anything for herself, I came to the conclusion that she's be as happy doing the same in a room in a nursing home. In the event, she was moved from hospital into a nursing home, and it wasn't really what I wanted but....

Much to my surprise, once she was there, she didn't want to be in her room, wanted to be with others, ate in the dining room and preferred to sit in the lounge. She didn't really communicate with others but seemed to enjoy watching.

It gave me such peace of mind. I had to ride through the guilt, and the sadness- I'd move 60 miles to be with her and care for her, but she'd been placed 20 miles away, do-able but no really near enough.

Do consider residential care both for you and for her- do a week or maybe two in respite, get yourself a break and see how you feel

We carers are as important as those we care for, don't forget

Hi Jessbow, just looking back through some of my posts from late last year when the demon dementia had taken another drop, and I was tearing my hair out with the worry of her being on her own and how I could get her to agree to some respite. I was also contemplating moving into her bungalow, or selling up and buying a bigger place with an annexe. But it's been taken out of my hands now, she had a raging UTI with complications, went into hospital and from there to a lovely small care home within walking distance from my house. (Private, but my father worked hard to provide for her and I will sell her house to make sure she gets the best). I am so glad I got the Lasting Power of Attorney for health and welfare when she had the capacity to grant it - it meant that social services could not dictate where she went after hospital, no mental capacity assessments, no stressful meetings with doctors and psychiatrists - it meant I could make the decision for her. She tells me every time I see her that she might as well be at home - that's the home where she lived with her parents - but she is sitting with the others, eating good home cooked food and walking about better than when she was at home. And the anxiety and agitation has diminished, which gives me some peace of mind. I keep telling myself this is just a few weeks respite, but I know deep down that she is never going to be able to live on her own any more. I am starting to relax at last, but now experiencing the sadness and guilt, as you say, but hopefully this will be a new phase in our relationship and I can be her daughter, take her out shopping and spend some quality time with her at last.

 

[katie1]

Decision Time for us also

Dad has deteriorated over the last coupe of months and more specifically since Christmas! His speech is often slurred with word like noises but not real words, sometimes there are words but no actual sense, then there are words in sentences that change and don't finish. He is very agitated and anxious and can become aggressive at times. He doesn't really do anything much. He dozes and if he sleeps it is in fits and starts and he is often awake severe times a night. He needs help with getting dressed and is forgetting previously known routines. He asks where the tilt is and often does not recognise my Mum and "sees" other people in and around the house, He asks frequently to go home when he is already there, he seems troubled. Poor Mum is woken several times a night, he will wander out of the door and could easily stumble and fall. Mum has poor mobility and could not go after him.
Because the situation is reaching a head we are looking at care homes with secure doors! and EMI dementia provision. However has anyone got any ideas on how we let him know that this will be his new home? how do we tell him that he is moving into a care home?
When he was well a few years ago he told us he didn't want to go into one, I told him we would look after him at home for as long as we could. Well......I think Mum has reached that point. But how do we explain it to him?
Any suggestions?

 

[count2ten]

Dad has deteriorated over the last coupe of months and more specifically since Christmas! His speech is often slurred with word like noises but not real words, sometimes there are words but no actual sense, then there are words in sentences that change and don't finish. He is very agitated and anxious and can become aggressive at times. He doesn't really do anything much. He dozes and if he sleeps it is in fits and starts and he is often awake severe times a night. He needs help with getting dressed and is forgetting previously known routines. He asks where the tilt is and often does not recognise my Mum and "sees" other people in and around the house, He asks frequently to go home when he is already there, he seems troubled. Poor Mum is woken several times a night, he will wander out of the door and could easily stumble and fall. Mum has poor mobility and could not go after him.
Because the situation is reaching a head we are looking at care homes with secure doors! and EMI dementia provision. However has anyone got any ideas on how we let him know that this will be his new home? how do we tell him that he is moving into a care home?
When he was well a few years ago he told us he didn't want to go into one, I told him we would look after him at home for as long as we could. Well......I think Mum has reached that point. But how do we explain it to him?
Any suggestions?

Sounds like my mum was, leading up to xmas, constant phone calls asking me when I was coming to take her home, or wanted me to take her home whenever I was with her. She would say "shall I come with you now or should I get a cab later". Has the GP ruled out any kind of infection -UTI's really common in elderly, makes the dementia 100 times worse and can make them completely confused, muddled words, loss of balance, poor mobility.

Re: residential care - Circumstances change and promises made cannot always be kept as you have to re-assess the situation and ensure your father's safety and wellbeing. As he is unable to make an informed decision about his care at the moment then his next of kin or family would have to be involved in a mental capacity assessment, and then a best interest decision will be made. If he has given someone power of attorney for health and welfare then that person can make the decision for him. All care homes have a duty of care and doors have to be locked - not only to keep people inside safe but to keep other people out. They are required by law to complete a deprivation of liberty (DOL's) assessment for each resident so they can legally lock the door unless you have power of attorney for health and welfare and can make this decision for them.

That's the legal stuff, but I found this the hardest thing to come to terms with, and still haven't even though it was taken out of my hands when my mother was hospitalised and couldn;t go home as she was so weak and unsafe on her own. Having said that, since she has been in respite for the past few weeks she has picked up so much that she now keeps asking to go back home - another dilemma I just can;t cope with at the moment.