When is a person unsafe to be left alone?

[HelenInBC]

This is a question I ask myself all the time. Every day probably! I wonder if I will wait too long and something terrible will happen. My mom's gerontologist tells me not to get wrapped up in "what ifs" because incidents with dementia patients are rare.

BUT...
These are the things that have happened with my mom that make me worry that she shouldn't be alone:

-wakes during the night and thinking she has slept all day. Gets up, eats, gets dressed and goes wandering out to the lobby looking for people. Calls her friends and family wondering why nobody is around.
-forgets to eat unless someone is there to guide her. Doesn't seem to recognize hunger, although she gets thirsty at times.
-having incontinence problems- both urine and stool. Often can smell an odor of urine around her.
-avoids showering.
-has left her outside door standing wide open (faces into the street) and gone to bed at night- found by my daughter who came to spend the night and found it open.
-keeps food in her fridge until it is long past safe to eat. Never throws food away.
-has large size furniture in a little apartment and refuses to allow us to change anything. Coffee table is so large that she has torn open her shin several times trying to get around it. I'm afraid she is going to fall because her balance is so poor.
-can't use the stove or oven safely (we shut it off at the breaker panel)
-wouldn't know how to respond to a smoke alarm.
-set off the smoke alarms in December by letting a candle burn down into the setting till it started smoking.
-can't go anywhere alone. I'm sure she would get lost. So far she only goes with her hired companion for groceries and appointments, but how long until she decides to go alone one day?

...I could go on and on.

I just don't know how I will know when to arrange 24/7 care. How do you know when it's time?

 

[nellbelles]

Hi Helen

I am here with my husband everyday and yet I think the same, I have no idea when things will get out of my grasp.

What ifs are like winning the lottery, they may happen BUT they may not.

I have reread your post and I think that you already know the answer, it would seem to me that you need to start putting extra care in place soon. Soon meaning that you maybe have time to make choices of how to proceed, but not an indefinite time.

Wish I could tell you positively what to do.

sorry that is the best I can advice.

Helen x

 

[2jays]

WARNING!!!!

Harsh words coming up!!!

Who is upset/worried about this scenario ...

Me

You

With the utmost respect..... Do your mum a favour........
Do yourself a favour....

Look into 24/7 care.....

Maybe it's a carer coming into her home....
Most probably it's 24/7 in a care home.

Let me tell you something that I found very difficult to understand for myself......

You are not super person..... You cannot do everything ....there is only so much you can sort out to keep them safe....then you have to (so hard) ....... let go.... And let others take over the care.

A different way to care. Doesn't mean you don't care. It means a different care.

AAAAGGGGHHHHH this disease.

Thinking of you. You are not alone.... Even though you feel you are

 

[FifiMo]

You can try turning your questions around in order to get the answers...

Would you be willing to sleep on your own, as able bodied as you are, in her home with the front door standing open all night?

Would you manage to survive for days without food? Would you eat the food that is in your mum's fridge?

Would you be able to cope if you were doubly incontinent? What would be the risk to health if you didn't keep yourself clean and what would be the effect if you ended up with bad untreated infections?

You can answer all your questions in this manner but I think you already know deep down that the time has come where quality of life for your mum can only be achieved in a care setting. This is not any reflection on you and it shows that you are putting your mum's needs above all the emotional tugging at the heart strings that this brings.

As well as being for your mum's benefit it is going to end up being the only thing that can give you peace of mind and let you sleep knowing your mum is safe.

Hope this helps,

Fiona

 

[ejay7]

FifiMo, that's a great answer

Please don't leave it any longer. Imagine your regret if your Mum causes injury to herself. She clearly is unsafe and a danger to herself. In a 24 Care Home someone will be there to monitor and assist her with all her needs. She will be reassured when she feels disoriented and confused. She will be guided to use the toilet facilities and incontinence aids and so will have her dignity maintained. There will be no risk of access to dangerous or unsafe household equipment etc.
My own Mum has just gone into a home and although she has moments of upset at her new situation, on the whole she thinks it's wonderful being looked after. She is always praising the staff.
Most importantly, the time you spend with your Mum will become quality time when you can just be 'together' and not distracted by all the negative practicalities. And that can only be a good thing!

 

[Grannie G]

You can try turning your questions around in order to get the answers...
Fiona

Brilliant!

 

[Witzend]

Except for leaving doors open, because she wouldn't go out and was obsessed with locking up, my mother was doing all these things and a few more. We knew she wasn't really safe to be left alone any more, but we put off doing anything (except for all the family support that was in place) because it was going to be such an upheaval to move her into residential care. She had a truly wonderful cleaning lady who was coming in more often but because she was suspicious and in any case not sociable she would never have accepted extra care from strangers. OFten she would not even let in the person who was coming to make sure she took her Aricept. Of course she could never remember that anyone was coming, or why, so it was perfectly understandable that she refused to let what was to her a total stranger into the house.

Eventually things came to a head when she had a bad fall - and she had never been a 'faller' -she was black and blue with very sore ribs, though she hadn't a clue how it had happened. I had to take several days off work to look after her. This made the decision for us. I can't say it was easy, and we did it with a very heavy heart, but to be honest by then we had known for some time that it was overdue. None of us lived very near and although I was often staying the night, more frequent dropping in wasn't an option. In any case by then it wouldn't have been enough.

From what you say, it sounds as if your mother is in much the same way. You have my every sympathy - it's such a huge and worrying decision, I think a lot of us put it off for as long as possible.

 

[Isabella41]

All the things you describe and more besides are what my mother does. The problem is she doesn't see there are any problems and unless she willingly agrees to go into a home no one can make her as she is deemed to still have sufficent mental capacity to make this decision - don't even get me started on that one!!

Mum lives in sheltered housing but there is only a warden there 30 hrs per week. Whilst the main front door is secure its by no means foolproof. I've lost count of the number of times a complete stranger has held the door open for me to allow me in. I could be anyone and once inside the building I am free to roam and pose as a health worker etc.

I think your first step should be to talk to the professionals involved with your mum to see if they full time care is appropriate and of course there is the question of your mum's willingness to go into care.

This is such a sticky time on the dementia journey. We as the family feel they'd be safer in care and seek to have them go there out of the purest motives but the person with the dementia does not quite see it like that.

Isabella

 

[Witzend]

I think your first step should be to talk to the professionals involved with your mum to see if they full time care is appropriate and of course there is the question of your mum's willingness to go into care.

To be honest I can't see how any professional, who may not see the person very often at all, is better placed to know what's best than family who see them all the time.

Especially when, as so often happens, the person will insist that they're fine and the professionals are only too willing to believe them, esp. if any LA funding will be necessary.

 

[Isabella41]

Sorry.. Let me clarify. What I meant was that generally speaking unless you have the support of the social worker or CPN getting a place in an EMI Unit will prove very difficult.

I am in the middle of all this with my own mum at present and even though her own SW admits that mum does better in care she is powerless to do anything about this for now as mum is deemed still have sufficent mental capacity to make decisions as to where she lives.

I could short circuit the whole process by refusing to do anything at all for mum as her living in the flat depends on a certain level of support from me but I've learnt to choose my battles.

Mum goes into respite a few times per year. The home she goes to is well recognised as being in the top 3 in our area and yet every time there are residents walking around with injuries such as bruises on their heads and burns. Even in such a safe enviornement they can't be watched 24/7 and it only takes a brief second for an accident to happen.

As time has passed I have realised that I was driving myself quite mad constantly trying to second guess mum and protect her from every possible obstacle and danger. I couldn't do it with my children when they were younger and yet they've survived into adulthood so I guess I've realised that all I can do with mum is look out for the more obvious ones such as disconnecting the cooker and keeping cleaning fluids away.

Isabella

 

[cragmaid]

Hiya...I don't know you or your Mum personally so let me make it clear that this is my opinion, solely on the written facts..... OK that's the disclaimer bit over..
The time has come..now!
You know that whatever you do to keep her "functioning" at home, there is now an obvious risk to her safety or to her neighbours from fire/ flood or accident.
She cannot care for her personal hygiene alone. How does she manage with medication?...as you say, the list goes on and on.
If she really wants to stay in her own home, what is the likelihood of 24hr carers? Even if this can be managed from a financial direction, would her home be big enough ( with or without the large furniture)? What would you do if she decided that she was not going to have any one of her particular carers at any given time in the house?
So, unfortunately, I have just added a few more questions to the many already floating around. I guess that it's time for a family conference.

 

[HelenInBC]

Thank you so much everyone for your kind and thoughtful responses. At the moment, we are patching things together. I have a paid companion who is wonderful and comes Mon-Fri for 2-3 hours after lunch. She takes her for a walk, helps her with tasks, encourages her to shower, checks her food, takes her grocery shopping, etc. but there are still quite a few hours in the day she is alone.
Lately I've been more concerned about her night waking, so my daughter has been sleeping there in her spare room to keep an eye on it. We installed a door alarm on her bedroom door so my daughter will be alerted and can direct her back to bed. This is not a long term solution, but it has been helpful for us to gather information about what is actually going on. She seems to wake up most nights 2-3 times, thinking she has slept all day. Sometimes my daughter has trouble convincing her it is night time, but so far she has been managing it.

I am currently waiting to hear back from my mom's case manager with the local health authority. She will be making an appointment to come and reassess my mom's situation. I am hoping they will allow me to apply for a special type of funding to help us pay for in-home care. As I'm sure it is the same in the UK- the system is far from ideal, and I may need to navigate lots of red tape to get this application. For now, I am gathering as much information as I can about my mom's situation. I'm hoping to be able to show the case manager that she is not safe to be left alone anymore.
So far, in my dealings with them they have offered no help at all. I had to arrange with a local pharmacy that delivers to get daily deliveries for my mother's morning meds. They come and change her exelon patch and watch her take her pills. The evening meds are another matter- she normally doesn't take them unless someone is there to watch her.

I'm hoping for 24 hour care in her home, but we may need to work up to that. The financial side is what worries me. My mom is physically quite healthy, although very small and not strong. She could potentially live a long time and I worry about her savings holding out if we have to pay for the care completely ourselves. Two of her sisters lived into their 90's and my mom is 86 now.

Today I'm at work trying to manage a new problem. She's been having severe arm pain for a week or so. It's likely arthritis as she has this same problem last year and had a cortisone shot into the joint which helped. My daughter says she can take her to the doctor after school today. Fingers crossed that goes well without too many snags...

 

[Norfolkgirl]

You can try turning your questions around in order to get the answers...

Would you be willing to sleep on your own, as able bodied as you are, in her home with the front door standing open all night?

Would you manage to survive for days without food? Would you eat the food that is in your mum's fridge?

Would you be able to cope if you were doubly incontinent? What would be the risk to health if you didn't keep yourself clean and what would be the effect if you ended up with bad untreated infections?

You can answer all your questions in this manner but I think you already know deep down that the time has come where quality of life for your mum can only be achieved in a care setting. This is not any reflection on you and it shows that you are putting your mum's needs above all the emotional tugging at the heart strings that this brings.

As well as being for your mum's benefit it is going to end up being the only thing that can give you peace of mind and let you sleep knowing your mum is safe.

Hope this helps,

Fiona

Great points Fiona but rather the gerontologist should answer these questions himself!!!! (and see if he would still have a carefree approach?)

 

[Norfolkgirl]

Sorry.. Let me clarify. What I meant was that generally speaking unless you have the support of the social worker or CPN getting a place in an EMI Unit will prove very difficult.

I am in the middle of all this with my own mum at present and even though her own SW admits that mum does better in care she is powerless to do anything about this for now as mum is deemed still have sufficent mental capacity to make decisions as to where she lives.

I could short circuit the whole process by refusing to do anything at all for mum as her living in the flat depends on a certain level of support from me but I've learnt to choose my battles.

Mum goes into respite a few times per year. The home she goes to is well recognised as being in the top 3 in our area and yet every time there are residents walking around with injuries such as bruises on their heads and burns. Even in such a safe enviornement they can't be watched 24/7 and it only takes a brief second for an accident to happen.

As time has passed I have realised that I was driving myself quite mad constantly trying to second guess mum and protect her from every possible obstacle and danger. I couldn't do it with my children when they were younger and yet they've survived into adulthood so I guess I've realised that all I can do with mum is look out for the more obvious ones such as disconnecting the cooker and keeping cleaning fluids away.

Isabella

Out of interest, does your mother agree/give permission to go into respite care? If not and she still goes, albeit a few times a year, then how does the same argument apply in the case of permanent residency in care home, how does she get into respite if doesn't agree to it?

 

[sussexsue]

Hi

Poor you and your mom, and what a totally useless gerontologist.

You cannot cure your mom of this awful disease, but she clearly needs to be in an environment now where she is encouraged to eat good food, be cared for and made safe. When my mom was at this stage (and still living with us), we wouldn't even consider leaving her alone in the house. Yes she still had falls and too many trips to A&E but at least we were always there to rescue her.

I often think that when we start asking questions, that is a cue that the time is right.

Sue

 

[HelenInBC]

Hi

Poor you and your mom, and what a totally useless gerontologist.

I must say, I do like him and he seems to be very thorough. I just think it's often very easy for them to say things like this, sitting on the other side of the desk. He sees her for 30 minutes once a year so I'm sure he's not getting the entire picture. I often feel like they have heard it all so many times they don't even listen anymore

I often think that when we start asking questions, that is a cue that the time is right.

Very wise statement. Sometimes I think I must be over-reacting, as none of my siblings seem to worry much about my mom. At least, I'm the only one in daily contact with her. Sometimes I feel like an only child

 

[Isabella41]

Out of interest, does your mother agree/give permission to go into respite care? If not and she still goes, albeit a few times a year, then how does the same argument apply in the case of permanent residency in care home, how does she get into respite if doesn't agree to it?

My mum is at the stage where she thinks she will be happier in any place but where she is. She asks to go into the care home and states she thinks its the best place for her (which it is) but within a couple of days and sometimes even hours of being there she wants back to her flat as she thinks she will be happier there. This cycle has been going on for about a year now. Eventually the time will come when she will no longer have the capacity to make such decisions and then she will be in the care home permanently.

For now its a real waiting game. I know she's not really safe living on her own in sheltered housing and I could drive myself quite mad conjuring up all the endless possibilties of what she could do to herself and of course her neighbours but I am powerless to do anything. I've spoken to both patient and carer's advocates who tell me that so long as my mother is deemed to have capacity there is no way she can be forced into a care home against her will.

She can't cook or clean. She has carers coming in 4 times per day to ensure she has food and to give her medication. She can't manage her own affairs. Her personal hygiene is non-existent and the place smells something rotten (despite my best efforts). She is not totally incontinent but its pretty bad and there are regular faecal accidents too. Depsite all this the powers that be say she is capable of deciding where she should live. Now I know if I were to walk away and leave her to her own devices she'd be in a home within days as there would be no one to take care of the day to day things that allow her to be in her own flat. I walk a very thin line regards trying to keep her happy which is an almost impossible task and deciding when I should walk away to force things to happen.

For a long time I beat myself up something rotten and worried myself half to death with all the 'what ifs'. As I said in an earlier post I am realising that being in a care home is not a 100% guarantee against harm as I've seen so many residents in what I consider to be an excellent facilty with huge bumps on their heads and other injuries. Its only natural that we want to protect our vulnerable relatives but there are limits no matter what the care setting.

Isabella

 

[Norfolkgirl]

Isabella, in the case of your mother being happy/has capacity to go to care home in first place then if she changes her mind, she has capacity (according to "experts") to make arrangements HERSELF to get out of there in which case you should have perhaps stayed well away until she seemed more settled?

 

[Isabella41]

Isabella, in the case of your mother being happy/has capacity to go to care home in first place then if she changes her mind, she has capacity (according to "experts") to make arrangements HERSELF to get out of there in which case you should have perhaps stayed well away until she seemed more settled?

On paper this does indeed sound an excellent piece of advice. The last time she was in there for respite I told the Social Worker I was unable to pick her up to take her back to her flat. The Social Worker then went to the care home and picked mum up herself.
If I refused to do the grocery shopping then a carer would be paid to do it. They are already paid to get her small bits and pieces like bread and milk. They are paid to clean but she refuses to let them citing that she wants to do it herself which of course she isn't able to. I would be a pretty horrible individual if I refused to call a doctor when mum phones me to ask for one. Alot of the time when I phone to ask for a home visit there is really nothing wrong with her and the GP gets quite cross and tells me its all being noted down. There was a time when I tried talking mum out of her need for a doctor but now I don't argue, I just ring every time. I'm hoping this will build up a dossier that will count towards the case for her eventual need to be in care fulltime.

If I refused to do all the other things that allow her to live in the flat then chances are the arrangement would break down and she'd be in the home for good pretty quickly. This time last year we were in the midst of pretty horrible times with accusations flying in all directions which in no small part led to my total estrangment from my daughters. Now that things have settled down considerably I have no wish to start another war.

Its a hard road we all travel. We know with our heads what is the safest option but when human emotions and other family members add in their influences then it all gets a bit blurred and we try to come up with a best fit solution at the time.

Isabella

 

[Wolfsgirl]

Hi Isabella, you are in a horrible situation which I hope will pass soon. In the meantime, I would simply be 'away' unable to collect your Mum any time she is in respite and leave the social worker to sort it all out, make sure she had supplies etc.

Not sure why a fallout happened with daughters but maybe because they did not understand why you were trying to avoid the imposed level of care being forced on you? I think you are wanting the best for your Mum and the best for you too by having her in care, and hope reach a resolution soon.

I have heard others say 'ok SW, you take responsibility from now on you are the expert, I will hold you responsible if anything goes wrong etc'.

Good Luck!