Any comments on proposed care package please

[Steve115]

My wife went into hospital with an infection at the start of December. An initial assessment advised that she should be released to a care home when ready so that changes could be made to our home to allow me to care for her more easily - gantry hoist, hospital bed, special mattress etc. She is now bed-boun, can only sit in a chair for 30 mins max and needs assistance with most other things. We will now live downstairs in the main living room. All has now been supplied and the house rearranged and is ready. At the original assessment it was agreed that a single care visit would be appropriate to help get her up and ready though I insisted it was late morning as my wife has and still is a late riser.

As a result of further infection her chest she is still in the nursing home but is now sufficiently well to start planning to get home. A further assessment was carried out today and a package of of 4 daily visits is now on the table. I pushed back on this, unsuccessfully at this point, as I feel that 4 visits daily are intrusive and I know that OH will not be very unhappy with constant 'interferance'. This will plan out to be 1 visit every 2.5 to 3 hours. She of course said that she did not need any help and that any help she might need would be provided by me.

My question is to those who have experience of this sort of package and is, How intrusive is it? Already I feel as though I will always be waiting for the next visit and as a result have even less time to myself than now.

Thank you in advance
Steve

 

[Beate]

It's usually the maximum care package so if that's suggested by them, they feel she will need it (and they don't offer this lightly). Quite frankly, I would never knock back help offered, especially with a bedbound person needing a hoist. Have you dealt with this situation before and do you know you can handle all this on your own with just one carer visit a day? Because I can guarantee you will burn out pretty quickly. Carers are there to make your life better, not the opposite. Just try it and see. If you really can't stand them being in your home, you can always scale back again.

 

[Steve115]

Thank you for your prompt reply Beate. I have been looking after my wife full time for about 2 years now and she has been getting more and more frail. I had to do everything and am aware of how hard this is and will continue to be.
I do not expect that OH will get up much. In the weeks in the NH she has only got out of bed 3 times and I do not expect this to change at all. If there are problems such as wetness or she drops her drink/food and the bed is messy I will expect to deal with it not wait until the next visit so I am not sure what real benefit I/she will get.
Fortunately for me I am still only mid 60s and fit and healthy. I really don't want to look a gift horse in the mouth and initially will accept this help but at this stage it does feel a bit too much too soon.

Many thanks
Steve

 

[copsham]

Hello Steve,
I think you are right to try it out however your concerns are justified. From my mother in laws experience I would suggest when the home care is being set up that you look at consistency with the rota, what can the agency offer? Shop around. My M in L had 12- 16 people a week covering the 28 visits (2 at a time). She hated the intrusion but was reliant on it. She has to go to bed between 7-8pm because that is the latest they do lists. The individuals are all very kind but it is a different way of life

If you really do not need the visits stretched through out the day, could you have two doubled up to give you the opportunity to relax, go for a walk, do gardening etc?

I wish you well

 

[technotronic]

My wife when she was first released in December 2017 from hospital saw her released to sleep back on the settee where she come to love sleeping. At this time she was still able to walk easily, as she had walked up n down the corridors in the hospital during the whole time of her stay there.
The interim carers we had in put in place was for 3 visits per day.
Each time they arrived they asked what I needed them to do, sometimes it was to wash n dress n change her incontinence pants, then later visits were just to change her pants for dry ones.
When they first came they said they couldn't do anything that my wife wouldn't allow them to; my wife didn't like the carers being there n would not cooperate fully with what they needed to do, n would lash out at them or grab their arms or hands to stop them doing what they needed to do as a result they found it a none too easy a job changing her incontinence pants n cleaning her while she was lying on the settee, so I used to bend down n get her up n stand holding her for them while they changed her n cleaned her down below, once changed I would put her back on the settee.
Things soon changed the more visits we had, from not being able to do things unless my wife let them, to we're going to change you, or wash you.
I would say that that the help from the carers was useful in doing things for my wife she wouldn't let me do for her, but though useful found them a little intrusive but then needs must.

 

[technotronic]

After my wife had been released from hospital the first time she only walked at home for a few days then she didn't get off the settee for four days. When one of the carers found this fact out, insisted on being allowed to call 111 for advice, their advice was for a paramedic to be called, which carer said to me that if we called them n they came out it would be my decision if they took her to hospital or not, which was a lie as when they arrived they made the decision she should go into hospital n so they did. This to me is where the carers let us down in not recognising the stages a dementia sufferer goes through, n not walking or losing the power to be mobile is one of them. My wife couldn't even stand up while they changed her while I held her any more.
Carers whether Interim or part of a full care package need to be fully dementia trained if not they are less than useless in my opinion.

 

[Amy in the US]

Judging only from posts written by people here on TP who have cared for someone at home who needs to be hoisted, I would take the maximum care package being offered, and give it a fair trial.

It's easier to cut back on the help later, than to increase it up front.

Also, one of my dementia rules is "never refuse help." I understand you may feel differently and you should do what you think is best for both of you, of course.

Hope the transition is as smooth as possible, and best wishes.

 

[Steve115]

Thank you for your replies Copsham, Amy and Techtronic.
I wont reject any help initially but take heed from your experience Techtronic. Mywife seems to be in the similar position to yours as described. As you say my wife cannot summon up the energy or power to stand let alone walk. Hence she spends her time in bed asleep or watching TV. And this makes her happy.
I do hope that the Carers have some training with Dementia. I have found it quite hard explaining to hospital staff and some CH carers how she is experiencing Dementia. They still fall into the way of pigeon holing her, 'Oh she has dementia we must get her to this and that'. I think that hospitals are only interested in physical illness and CH carers obviously have 'targets'.
But please don't get me wrong her care has been Excellent but they need to learn to listen in the first instance.
Thank you all for listening