Please tell me ???

[rummy]

It would be very helpful to me to hear from those who have their AD loved ones in a nursing home.
What was that pivotal occurance, episode or condition that tipped the scale and you made the decision to put them in full time nursing care facility?
Right now I am at a loss to know when enough is enough and I thouht perhaps hearing from you would give me some perspective.
Thanks,
Debbie

 

[Dave W]

Point of no return

With Mum, she was taken into hospital rather moved to a home directly. The turning point came when the CPN had been called five days running either by myself or neighbours - Mum was locking herself countless times, calling the police accusing the neighbours of stealing from her, hallucinating, burning things in the garden. The CPN's decision - backed by the doctor and senior SW - was that she couldn't be allowed to stay home any longer as she simply wasn't safe to be left alone. It was a gut-wrenching moment (especially as this initially said they would probably have to section her), but with hindsight it was the right decision.

Ultimately, I think the decision has to be whether those providing the support necessary to stay at home can keep reliably supplying that support or not. And that's meaning ability rather than willingness. Sometimes it actually is kinder to do what feels like the crueller option - what my Mum wanted (to stay home alone) really wasn't what was best for her, and I had to recognise that.

I really don't know if this helps at all, but I do hope so. I hope that others will also be able to provide wisdom and comfort.

Dave

 

[jenniferpa]

Hi Debbie,

While my mother isn't technically in a nursing home, I thought I'd put my 2 cents in because the choice was either a NH or what we have currently. When my mother came out of hospital after having her strokes, it was quite clear that she could no longer live alone - she couldn't find the kitchen or her bedroom in the house that she'd lived in for over 20 years, and she was wandering - the only reason that she didn't wander far is because she has severe arthritis in her hips, which makes walking difficult. We started to visit nursing and residental homes. Since my mother has a reasonable level of savings, plus she owned her own home, I knew that any financial aid was not going to be forthcoming, so I decided that, essentially, money was no object - she was 88, and even with optimum care, we were probably looking at no more than 10 years. So, on the basis that you get what you pay for (how naive is that) I started at the most expensive well regarded homes in the area. The only pre-requisite is that she had to have her own room and bathroom. As I started my tours, I came to realise that quality of care didn't necessarily follow the money. In fact. the most expensive facilities seemed to be that way primarily because they took care of the really, really old, with all the attendant heath issues. It quickly became obvious that she wasn't at that state yet - she needed supervision, meals etc but she didn't need quite that level of care. However, she needed more than a normal residential facility could offer. In the end, we went for the "extra care" or "very sheltered" option. Her 1 bedroom flat, that she owns, is attached to a nursing home and a retirement village. All her meals, laundry, cleaning, maintenance etc is provided (or should I say, included). Domicilliary care workers based in the nursing home come each morning to give her breakfast, medicate her, shower and dress her, and then come back in the evening to put her to bed. On those occasions when she is ill, nursing staff from the nursing home take care of her, and the doctor visits her in her suite. There's a restaurant if she wants to eat there, but her meals are mostly served in her room. She gets taken out on trips (pub lunch, garden centre for tea) although, honestly, if asked she'd say she never left her apartment. The only down side of this arrangement is that she doesn't have the same sort of opportunity to socialise that she might have in a more communal setting. This didn't seem important at the time of the placement (she's always been very happy on her own, thank you very much) but with the memory loss, she can't remember that she's had ANY human contact, so she is lonely. You can be lonely in a crowd, though, I guess, and despite the memory loss, she's still able to conduct a logical conversation, even though she won't remember having it afterwards.

She will be able to stay in her apartment up to including the point that she needs continence care, although I may well more her to the NH before that point, since even with her savings, there is a point where if domicillary care costs as much as the NH fees would be, I'll have to make a decision based on finances (not something I'm looking forward to).

Anyway, I don't know if that's any help - I know it's not what you asked!

Jennifer

 

[Canadian Joanne]

Hi Debbie,
My story too is a little different. I brought my mother from her home in British Columbia to live with me Dec 30/2000. In the previous week, I had flown to BC, gone to the lawyer with her & got her legally separated from my stepfather, packed up 50 odd big boxes, made Christmas dinner (my absolute worst Christmas ever) and refereed a few fights between my mother and stepfather & had a couple fights with her myself.

Once I got her here (Toronto area), she spent exactly 4 days at my home before I had her involuntarily committed to hospital - I think they call it sectioned in the UK. She was unmedicated, having hallucinations, being verbally aggressive, saying she was going to take a cab home (3,000 miles away - yeah, right) and capped it off by pleasantly saying she was going to burn my books. Since I have about 4,000 or so & she was sleeping in the den where most of them are, sleep was optional for me, as she actually was roving around.

After a hysterical, crying phone call from me, my sister drove up from Montreal on Jan 2 and we brought her to the hospital Jan 3. Worst day of my life. Once she was properly diagnosed and treatment started, we were told she could not live on her own. We had no choice but to find a place for her. My sister lives 300 miles away and neither of us could quit working at that time to take care of her full-time. We found a retirement home, not nursing home, at first as she didn't qualify for nursing home care then.

So in a way, the decision was made for us - we didn't have to deliberate or agonize.

When is enough enough? Are you totally exhausted? Has the world shrunk down to AD all the time? The horizon is right in your face?

I personally think wandering and incontinence make it time. But it is a personal choice. Do remember that the earlier your mother goes into a facility, the more likely she will be able to develop relationships in the home. Don't let it go too long. Don't be a martyr, your mother wouldn't want that, would she?

Take care.

Joanne

 

[daughter]

Hi Debbie,

For us the moment came when Dad started wandering and being aggressive to Mum. (I think I've mentioned before that she used to go and hide from him sometimes.) I'd get phone calls from Mum telling me that Dad had gone out, mostly he'd return, but once we had to call the police and Mum was frantic with worry for over an hour. My sister and I were probably instrumental in pushing Mum towards [putting dad in a home] - (there I said those dreaded words), because we couldn't bear to see her becoming ill herself with all the stress and basically we just did not know what else to do.

Mum has learnt to 'speak Alzheimers' more now but she wasn't very good at first and living with it day in and day out really took its toll on her. Anyway, this isn't really helping you, but just to say that in my opinion, when you start to think about it, agonising over it, then it's time to start looking around. Just in case. This is really how we got ourselves (and Mum) to visit a home, thinking that we might not need it, but you never know... love H.

 

[Kathleen]

Our decision came out of the blue when Dad suffered a massive stroke one morning, there was no hope of recovery from later that same day.

He was Mum's carer with support from my sister and I. It became clear immediately how much he had covered for Mum, she was incontinent at night, wandering, and incapable of washing and dressing properly, even making herself a cup of tea was beyond her. She has never mentioned Dad from that day to this.

Because we needed to be with Dad as much as possible before he died, we very reluctantly took Mum, then aged only 73 to a care home and from there to a secure EMI care home. This is a route we never for a moment thought we would take, it never entered our heads that Dad would die first, but he did and we have had to manage the best way we can.

Looking back, it was, for her, the best way, she is safe, well looked after and mostly happy 24/7 and we visit as often as we can. She is still our Mum and we love her to bits, she loves us too, I am sure.

It is not the most expensive home around, or the most luxurious, but the atmosphere and staff are fantastic, they obviously care deeply for the residents and take care that we are ok too.

It is a tough decision, but you will know if and when the time is right for all of you.

Take care
Kathleen

 

[jenniferpa]

When is enough enough? Are you totally exhausted? Has the world shrunk down to AD all the time? The horizon is right in your face?

I personally think wandering and incontinence make it time. But it is a personal choice. Do remember that the earlier your mother goes into a facility, the more likely she will be able to develop relationships in the home. Don't let it go too long. Don't be a martyr, your mother wouldn't want that, would she?

I think Joanne's got it exactly right.

 

[rummy]

All of your responses are helping me tremendously and I thank you from the bottom of my heart for sharing your stories. Tomorrow morning is our meeting with the assessment committee but I think I already know what they will say. The more input I get from you all, the better I can think rationally about this !
If more want to share, I appreciate it.
Again, thank you so very much !
Debbie

 

[Dave W]

Ask yourself these ...

Debbie, I think - as someone else has just said - Canadian Joanne got it exactly right. The questions she put:

When is enough enough? Are you totally exhausted? Has the world shrunk down to AD all the time? The horizon is right in your face?

were, to me, exactly the right ones. Even if you're facing a situation where the person you're caring for might not actually be bothered if you become a martyr, eventually you have to accept that your life cannot go on as it is, and that that means a change in theirs.

It's an awful moment to face - it certainly was for me, even though I know it was coming - but running from it won't actually help you or them. It might not be the option you'd wish for, but we only have the choices that are available and organised care (as opposed to voluntary care, not matter how loving) is sometimes the right thing to do.

I hope tomorrow goes well for you, and that you get some well earned rest tonight.

Dave

 

[Kayla]

Please tell me?

Dear Debbie,
My Mum got really frightened in her own home, because she was having frightening dreams and disturbing hallucinations. She was also terribly depressed and then she started having falls which needed the ambulance service. Her health just seemed to be in a rapid decline and she wanted to go into a care home. We found a place in a local one with an excellent reputation and she seemed really happy.
It was her fall three months later which put her in a NH. She had been very unsteady on her feet for quite a time, so I suppose the fall was inevitable. Mum liked to sit in her own room, but she felt reassured that she could hear voices and other people were available if needed. I couldn't possibly provide the care she needs now, as they use a hoist to transfer her from chair to wheelchair. She is very fragile because of her osteoporosis and rheumatoid arthritis. Her conditon has been very unstable and she needs constant monitoring to make sure her medication is correct.
I can now visit her without having to worry about her day to day care and we have had some interesting conversations. She thinks it is the London Blitz at the moment! I've found that the nursing staff are very kind and caring and she is in the best place for her general well-being.
Kayla

 

[Dee]

Hi Debbie

My story is much like Kaylas's in that my mum had some falls and was "off her legs" as they stay round here. She was also confused, did not know where she was, did not eat or drink and was generally very frail.

Although the first month was terrible, really terrible, now a year on, my mum is as happy as possible I think, she is settled, walking, has put on weight and eats like a horse! Her memory has declined, inevitably, but she is being well looked after and is safe.

I think what Dave and Joanne said was absolutely right - it takes a lot of courage to change your loved one's life but she needs you to be strong for her and make the right decision.

I know its not much help but I'll be thinking of you

Kind regards

Dee

 

[Claire]

Hi Debbie

My Mum had reched the stage where she couldn't by left alone - she lived with me, but I was working full time. She was attending a day centre 6 days a week, as my work pattern required that. She was in the early stages of incontinence, and likely to wander if left alone. Anyway, she had a fall which left her in a lot of pain, and unable to bear weight. She was brought home, and left in her bedroom, with nurses and sitters coming into the house. After a week I called her social worker and I think I uttered the magic phrase - "I can't cope". By this stage I was incredibly stressed. Anyway, the social worker organised emergency respite within a day. Mum went into a home which was pretty good, initially until she was mobile again. She had only been there a couple of weeks when the social worker asked me if I would like the placement made permanent. I nearly said no, its too soon, but then realised that I needed to say yes, for her and for me. So she stayed, but was on the waiting list for a brand new specialist home. She was offered a place three months later, which I accepted. I was surprised at how quickly she settled in a home - another indicator that it was the right time I think. She has been in the new home for nearly two years now, and my stress has disappeared. She is happy most of the time, loves to see me, even though she can't remember my name, and is wonderfully cared for 24 hours a day. Even if I had given up work, which I wasn't able to do, I couldn't give her the level of care she needs, and gets. Looking back, I knew for some time before that the time was right, but felt I would be letting her down if she went into a home. I don't think I could have been more wrong about that.

Take care

Claire

 

[Lila13]

Social Workers etc. said it was up to my mother herself to decide, I wasn't even supposed to be part of the decision-making process (only held responsible when things went wrong). She wasn't competent to decide, but professionals who only saw her for short times didn't believe us.

We made an appointment for her to visit a home near me in February, then she went and sat out on the ground in the garden after dark (she said it wasn't a fall "I was just sitting out in the garden" and when she'd had enough of sitting out there in the dark and the cold she pressed her button to alert a neighbour) and as a result got a bad chill and we had to cancel that appointment.

Of course there is no knowing if she'd have lived longer or died sooner if she had moved.

Lila

 

[rummy]

The verdict is in

I wanted to update you all. We had our assessment meeting this morning with the social worker and the psychiatrist. The news is not good. As happened to many of you, we were simply told that Mom cannot go home unless she has three full time care givers. That just isn't feasible. So she will go directly to a nursing home in five days. Tomorrow we will check out the ones they recomended to us.
In addition, we were told Mom is in the later stages of alzheimers and that hospice will also be called in. I point blank asked the doctor what he thought Mom's life expectancy is and he said, months, not years.
My Dad is totally broken hearted and I am numb. It is so hard to believe that my Mom will not be in our lives the way she has been any longer.
Thank you all so much for your stories, your advice and for thinking of me. It helps more than I can say.
Debbie

 

[Amy]

Hang in there Debbie. Thinking of you.
Love Helen

 

[Tender Face]

Debbie, people like you on this forum just amaze me. To have such grace at a time like this...... sending you a hug and offering a little prayer - for all of you,

Love Karen (TF), x

 

[mel]

Dear Debbie
I'm so sorry to hear this....everything seems to have moved so quickly in all of this..
You must all stay strong.....I know you will
Love and as many hugs as you can bear
Wendy
xx

 

[rummy]

I cannot express enough how blessed I feel to have all of you on TP thinking of me and remembering me in your prayers. We are all on such a difficult path and it warms my heart to feel such compassion from you all.
Thank you for your encouragment and advice.
Still hanging on!
Debbie

 

[jenniferpa]

Debby, I'm so sorry you've had such bad news.

Jennifer

 

[Brucie]

he said, months, not years.
My Dad is totally broken hearted and I am numb. It is so hard to believe that my Mom will not be in our lives the way she has been any longer.

Hi Debbie

sorry to hear of events, and hope things turn out for the best - whatever that may mean in this circumstance!

Do bear in mind that doctors don't know a heap about prediction of outcomes for people who have dementia. It is simply not possible to do that, since they wax and wane like the moon. One week we may think them on the verge of something major, then the next week they are back to the normality they had established before.

Just do the Day by Day thing and enjoy each moment with her. And each other.

Best wishes
Bruce