Research for the Future - Advice Please

[2jays]

As some of you may know, Mum (age 77) has Mixed Vascular Dementia, COPD (Chronic Obstructive Pulmonary Disease) and CCF (Conjestive Heart Failure)

Mum will need a Care Home sometime in the future. What I am trying to work out is what type?

At the moment, I visit once a week for the day, and she has Carers visiting (private funding) every day, a visit at approx 10am and a visit at 6.00pm for ½hour each time. They are a new care company and are identifying her needs, contacting me with any new concerns they have and I feel confident with them. I can see, very soon, I will need to extend the times they visit as Mum seems to have had a recent drop off her plateau and moved onto another lower level. (Family and sibling are still to catch up with this change )

It could be the changes with the new Care Company, but think not, as Mum very relieved she doesn’t have the other company coming in. (when she remembers )

Since I have been regularly visiting, Mum has “relaxed” with me and trusts me implicitly – and she keeps telling me this – my sister on the other hand ...... I think this is because I use the Contented Dementia way of dealing with her (didn’t realise I did this until I recently read the book) and my sister is unable to do so (she will be getting the book for Christmas!). So for the moment, sister is the Devil, I am the Angel.

Mum is not eating properly – can/could operate a microwave but not make a meal from scratch (used to be a trained cook ), housework etc ..... what housework, apart from talking about what cleaning/changig sheets etc she has done that day...... personal care very questionable, has what she calls “giggle leaks” and uses T*** Lady to catch them, or rolled up toilet paper in a big wad..... short term memory, on the day, shot to pieces, but can (?why?) remember a couple of days later some things – not appointment dates, or that they have been made, but things like food shopping, going to see a friend, that I visited...... maybe that’s because they are warm feelings and appointments etc are not...? She visits an AgeUk club one day a week - sometimes she likes it, but often not as "there are people there who are so old"......(most her age)

Health not good... gets very breathless and panics about that, has panic attacks often, has "spinnys" occasional falls and stumbles when getting up from chair, out shopping, when in a situation she's not comfortable with.... These episodes are being checked by doc - Chest xray, respiration monitoring, heart tracing - ECG? antibios when unusually confused (I was introduced as her sister most of yesterday - she's never had one but insisted I was her sister)

Soooo..... back to original question. Which type of Care home? Nursing Homes with dementia care? EMI homes? My guess is dementia is not going to be the main issue in her care, the other things she’s got are going to get her first......

 

[Mariondb]

My instinct would be a Nursing Home who take dementia patients. You need her medical issues monitored i.e. control of blood pressure, heart/kidney function etc and medication, but also you need a home capable of handling dementia patients.

MIL has recently been admitted to a local one to us, she has medical issues with heart (CHF), kidney, blood pressure, TIAs etc - plus is doubly incontinent and immobile. Her dementia (although not officially diagnosed) is not that advanced, but we assume it will be so but clearly it is difficult to know whether, because of her medical issues, it will advance quicker than her medical problems.

So perhaps look at Nursing Homes who take dementia patients....

 

[2jays]

Mariondb Thanks for your answer. I think after typing the post, I had/have come to that conclusion too really, but am going through a wobbly moment wondering if I am thinking the right way. Ideally I suppose I need an holistic (all the person) rather than identifying one aspect. Oh the worry of trying to do the right thing and then finding out you haven't that I have read on here has made me question my decisions. Sibling and family think it's a good idea to get her into a home so she gets used to being in one "as a start" then see what happens give them their due, they are worried more about me and how I am coping and do support when/if they can, but don't worry about mum as they think I am making good decisions for mum. Which is really nice...... (want to type but... - but that's being unkind about them, when I don't mean to be)

 

[xyz]

As some of you may know, Mum (age 77) has Mixed Vascular Dementia, COPD (Chronic Obstructive Pulmonary Disease) and CCF (Conjestive Heart Failure)

Mum will need a Care Home sometime in the future. What I am trying to work out is what type?

At the moment, I visit once a week for the day, and she has Carers visiting (private funding) every day, a visit at approx 10am and a visit at 6.00pm for ½hour each time. They are a new care company and are identifying her needs, contacting me with any new concerns they have and I feel confident with them. I can see, very soon, I will need to extend the times they visit as Mum seems to have had a recent drop off her plateau and moved onto another lower level. (Family and sibling are still to catch up with this change )

It could be the changes with the new Care Company, but think not, as Mum very relieved she doesn’t have the other company coming in. (when she remembers )

Since I have been regularly visiting, Mum has “relaxed” with me and trusts me implicitly – and she keeps telling me this – my sister on the other hand ...... I think this is because I use the Contented Dementia way of dealing with her (didn’t realise I did this until I recently read the book) and my sister is unable to do so (she will be getting the book for Christmas!). So for the moment, sister is the Devil, I am the Angel.

Mum is not eating properly – can/could operate a microwave but not make a meal from scratch (used to be a trained cook ), housework etc ..... what housework, apart from talking about what cleaning/changig sheets etc she has done that day...... personal care very questionable, has what she calls “giggle leaks” and uses T*** Lady to catch them, or rolled up toilet paper in a big wad..... short term memory, on the day, shot to pieces, but can (?why?) remember a couple of days later some things – not appointment dates, or that they have been made, but things like food shopping, going to see a friend, that I visited...... maybe that’s because they are warm feelings and appointments etc are not...? She visits an AgeUk club one day a week - sometimes she likes it, but often not as "there are people there who are so old"......(most her age)

Health not good... gets very breathless and panics about that, has panic attacks often, has "spinnys" occasional falls and stumbles when getting up from chair, out shopping, when in a situation she's not comfortable with.... These episodes are being checked by doc - Chest xray, respiration monitoring, heart tracing - ECG? antibios when unusually confused (I was introduced as her sister most of yesterday - she's never had one but insisted I was her sister)

Soooo..... back to original question. Which type of Care home? Nursing Homes with dementia care? EMI homes? My guess is dementia is not going to be the main issue in her care, the other things she’s got are going to get her first......

Hi 2Jays,


Sorry you have such a dilemma on your hands. It must be hard to know what's what and what is appropriate. I unfortunately don't know enough to help or advise although holistic does seem like the better approach. Treating an illness in isolation doesn't make sense to me, as its not just one problem to be concerned with and all must inter-link some how. I'm sure someone with more knowledge than me will be able to help.


Its totally natural to double guess your decisions, you wouldn't be human otherwise. Don't be hard on yourself (and keep that sense of humour ). Its good that the family is supportive however you need to look after yourself too.

I just wanted to let you know I am thinking of you, take care


xx

 

[ooster22]

Hi 2Jays - whether you ultimately decide your mum should go into a CH or not, I would strongly advise you to start looking at homes now so you are prepared if and when you make the decision. My mum needs nursing care and we found it quite hard to find a Home that can deal with dementia needs and nursing. We visited one lovely home but sadly they could not give mum the level of nursing care she needed, another home - nursing needs no problem but they did not take dementia patients.

We did find when looking at EMI/Nursing Homes that many of them were very depressing and most of the residents were very, very far along in their dementia journey. However, we were very lucky with the Home mum eventually went to - they are EMI registered (so key pads on the entrance doors and two lovely, but secure gardens), they can also meet all mum's nursing needs and they also take general residents.

So, in mum's CH there is a real mixture of abilities and levels. The Home is all on one level and there are 5 'wings' but all residents can move freely between them. Each wing has a lounge and a kitchen. On a good day mum will sit and chat with residents who either do not have dementia or who are only beginning their 'journey' and when mum has days where she is very confused she happily walks around with another lady who talks to her armful of toy animals. It really is a lovely place, one resident (who does not have dementia) has his dog living there with him.

Although, you may have read from my posts, mum's move into the Home has not been without incredible guilt and sadness on my part - and I cannot honestly say as yet she has accepted being there - overall I know she is being well looked after. Physically she has improved dramatically since being there which no doubt is due to the constant, vigilant and brilliant nursing staff.

It is an awful decision to have to make and maybe one that you don't feel ready to make for a while yet, but do find out what is available. You are doing such a brilliant job in making sure your mum is well cared for at the moment but you do have to look after yourself too. Perhaps if you found a CH you liked your mum could try a respite break there and see how that goes?

With love and (((hugs)))

xxx

 

[Redwitch]

Hi 2jays,

Not sure how advanced the COPD is (that is all I really know about, dementia is still a grey area for me), Nursing care sounds the obvious choice but they will need to have dementia training and the ability to cope with any downturns and strange behaviour.

COPD if advanced is quite scary, and will probably result in a few chest infections along the way, so both elements of care will be vital.

Sorry to be so honest and I hope I haven't upset you. My Dad had COPD and my Mum has dementia so I really do feel for you to have to cope with both at the same time.

Wishing you much strength

Jan

 

[2jays]

I unfortunately don't know enough to help or advise although holistic does seem like the better approach. Treating an illness in isolation doesn't make sense to me, as its not just one problem to be concerned with and all must inter-link some how.

That's how I feel but (not researched mums/our area yet) seems to me I am looking for gold dust in a dust pan of - oh you get the idea

(and keep that sense of humour )

Of course!!!! If I didn't would have to change my signature and it took an age to find the right one - that was clean and wholesome

I just wanted to let you know I am thinking of you, take care

right back at you as my American friend would say
xx

 

[2jays]

Hi 2Jays - whether you ultimately decide your mum should go into a CH or not, I would strongly advise you to start looking at homes now so you are prepared if and when you make the decision.

Mum will need to go to a care home if/when it gets to 24/7 care. Had her to live with us for over 3 months (felt like years ) when she first became ill and it failed miserably. Very lucky my OH and I have a very strong marriage/friendship but it got close to breaking down, so no way will I consider living with or having her to live with us and if she was able to answer the question, would tell me not to consider it.

When I started researching, thats when the wobbles started and I thought - "ask TP" and I was right - Great support and advice.

We did find when looking at EMI/Nursing Homes that many of them were very depressing and most of the residents were very, very far along in their dementia journey.

Found that problem when looking for convalescence homes/care for mum just before she can to stay with us. Nightmare time as such short notice, thats why wanted to be a good girl guide this time and be prepared

in mum's CH there is a real mixture of abilities and levels. The Home is all on one level and there are 5 'wings' but all residents can move freely between them. Each wing has a lounge and a kitchen. On a good day mum will sit and chat with residents who either do not have dementia or who are only beginning their 'journey' and when mum has days where she is very confused she happily walks around with another lady who talks to her armful of toy animals. It really is a lovely place, one resident (who does not have dementia) has his dog living there with him.

Definately thinking of moving to Cornwall.....

Thank you so much ((HUG))
xx

 

[2jays]

Not sure how advanced the COPD is

Me neither, but Doc seems concerned. My problem is that I am getting support from Doc, CPN, - I think, but if I dont ask the questions, I dont get told anything, and if you dont know what questions to ask...... I only found out recently that mum had a CPN, and she was the one who told me about heart failure. nobody contacted/told me (have all the legal stuff so expect to be consulted)

COPD if advanced is quite scary, and will probably result in a few chest infections along the way, so both elements of care will be vital.

Well she's had pneu.... (hang on looking at spell checker) Well she's had pneumonia, thats what highlighted the dementia part. three chest infections since august, a couple of UTI's.

ummm oh yes she gets very dizzy as I said earlier. low blood pressure and breathing problems are what I put the dizzy/stumble/falls down to. my diagnosis - doc non commital.

Sorry to be so honest and I hope I haven't upset you. My Dad had COPD and my Mum has dementia

Honesty is good. I appreciate honesty - wish more "proffessionals" could be honest. Never worry about upsetting me, but thanks for worrying you may have.

Feeling less and less wobbly, ((HUG)) to you