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Contingency Planning

DennyD

Registered User
Dec 6, 2016
74
Porthcawl, South Wales
Tomorrow will be 4 years since diagnosis. It has just been my husband and I. Lately I have become increasingly anxious thinking about what will happen to him should I become ill. There is no family who could step in. Our Alzheimer's support worker offered to arrange a meeting with social services to put in place a contingency plan. We arranged for me to have POA health and finance, and our wills were updated at the time of diagnosis. However, the big elephant in the room is what next? Those of you, where it is you and your spouse/ partner, what arrangements have you made should you no longer be in good health? What are your experiences with contingency planning involving social services? The prospect of them becoming involved with his life terrifies my husband, not least because he was a social worker.
 

sarahsea

Registered User
Dec 19, 2017
66
Tomorrow will be 4 years since diagnosis. It has just been my husband and I. Lately I have become increasingly anxious thinking about what will happen to him should I become ill. There is no family who could step in. Our Alzheimer's support worker offered to arrange a meeting with social services to put in place a contingency plan. We arranged for me to have POA health and finance, and our wills were updated at the time of diagnosis. However, the big elephant in the room is what next? Those of you, where it is you and your spouse/ partner, what arrangements have you made should you no longer be in good health? What are your experiences with contingency planning involving social services? The prospect of them becoming involved with his life terrifies my husband, not least because he was a social worker.
You've raised an important issue and something which I've been thinking about myself lately. My husband is 18 months post diagnosis, although I believe the dementia was there for 2 or 3 years before.
Social Services did a needs assessment for him last summer and a couple of months ago I received a copy of his care plan which included contingency plans if his main carer (me) is ill. It said that if I was ill at home they would provide 3 visits a day (meals and meds). If I have to go to hospital, they will take him to respite care for 3 nights. Not sure what happens after 3 nights if I'm still ill, or how they would get him into respite as he's still physically active and unlikely to agree.
Apart from a brother who lives about 45 minutes drive away, it's just the 2 of us. I was alarmed to see in the plan that if I'm in hospital, I have to somehow provide accommodation for my dog! Obviously I need to have a plan which includes both husband and dog and I've started by making sure my brother has a spare key, so at least someone can get into the house.

It is a worry when it's just the two of you. Personally I think it's worth involving Social Services to help with a contingency plan.
 

davidsitges

Registered User
Apr 26, 2018
13
I am exactly the same - PWD 4 years - no family as we live in Spain and relatives are in UK. Friends here are very kind and helpful but they could not be full time carers. One good friend came to our flat and looked after (i.e. fed) my OH when I cracked a rib but that was 2/3 days in bed and not a disaster. Now I need respite and support but only have domestic assistance. This forum is brilliant at easing problems by sharing!
I look forward to suggestions of how you get a "physically active and unlikely to agree" PWD into day care - I cannot think of a way.
 

DennyD

Registered User
Dec 6, 2016
74
Porthcawl, South Wales
You've raised an important issue and something which I've been thinking about myself lately. My husband is 18 months post diagnosis, although I believe the dementia was there for 2 or 3 years before.
Social Services did a needs assessment for him last summer and a couple of months ago I received a copy of his care plan which included contingency plans if his main carer (me) is ill. It said that if I was ill at home they would provide 3 visits a day (meals and meds). If I have to go to hospital, they will take him to respite care for 3 nights. Not sure what happens after 3 nights if I'm still ill, or how they would get him into respite as he's still physically active and unlikely to agree.
Apart from a brother who lives about 45 minutes drive away, it's just the 2 of us. I was alarmed to see in the plan that if I'm in hospital, I have to somehow provide accommodation for my dog! Obviously I need to have a plan which includes both husband and dog and I've started by making sure my brother has a spare key, so at least someone can get into the house.

It is a worry when it's just the two of you. Personally I think it's worth involving Social Services to help with a contingency plan.
Dear Sarahsea. Thank you for your reply. Indeed a strange arrangement to offer your husband 3 days' respite only. I can relate to having to face the dilemma of your husband not agreeing. Mine also is physically fairly active but will only take part in activities with me. He is very resistant to outside 'intrusion & interference' as he refers to it. I'm glad you mentioned your dog, what happens to the care of pets? My husband is very attached to, and defensive of, our cats. How will support workers respond to that? I guess it comes back to having to establish a relationship with carers so they understand him and our situation, hopefully allowing them to respond as best as possible. This is where I have a huge problem, and does not help our situation. I am resistant to allowing others into our private space. I know I have to overcome this somehow, but is proving a real struggle.
 

nitram

Registered User
Apr 6, 2011
19,936
North Manchester
I can't help feeling that although a contingency care plan filed with SS is a good idea if an emergency occurs the response will be little different to them being notified out of the blue, they will just trigger their emergency response.

SS may have logged some details of the PWD, as these are volatile I would have printed information prepared.
You could start with a completed >>>this is me<<< , I would add a schedule of current medication and where it is kept noting that it may be locked away. Details of GP should also be available.

You could use the Lion's Club 'message in a bottle' scheme.
You put a sticker on the inside of your front door to show you are a member.
Emergency services (and hopefully SS) will then know to look in your fridge where they will find an identifiable bottle

which contains
>>>this<<< (sorry if it's confusing it's designed to be folded) plus any other relevant info.

Several GP's and pharmacies have supplies of the bottle and form, failing that search lions international message in a bottle <your postcode>

 

DennyD

Registered User
Dec 6, 2016
74
Porthcawl, South Wales
I am exactly the same - PWD 4 years - no family as we live in Spain and relatives are in UK. Friends here are very kind and helpful but they could not be full time carers. One good friend came to our flat and looked after (i.e. fed) my OH when I cracked a rib but that was 2/3 days in bed and not a disaster. Now I need respite and support but only have domestic assistance. This forum is brilliant at easing problems by sharing!
I look forward to suggestions of how you get a "physically active and unlikely to agree" PWD into day care - I cannot think of a way.
Hi Davidsitges, Your mention of a good friend, goes to show the importance of having people around you can trust. It is only with trust that the 'physically active and unlikely to agree' can hopefully be persuaded to accept and go along with decisions made for them. Then there is the constant anxiety for us hoping that all is going well while we are not around.
 

sarahsea

Registered User
Dec 19, 2017
66
I am exactly the same - PWD 4 years - no family as we live in Spain and relatives are in UK. Friends here are very kind and helpful but they could not be full time carers. One good friend came to our flat and looked after (i.e. fed) my OH when I cracked a rib but that was 2/3 days in bed and not a disaster. Now I need respite and support but only have domestic assistance. This forum is brilliant at easing problems by sharing!
I look forward to suggestions of how you get a "physically active and unlikely to agree" PWD into day care - I cannot think of a way.
At the moment I can't see my husband agreeing to go into respite care if I was ill (and certainly not simply to give me a break.) Part of the problem is that he doesn't accept / remember / understand his diagnosis, so why would he need to stay somewhere else for a few days? But things change as the dementia progresses. When he was diagnosed, if someone had told me that he'd be attending a day centre 3 days a week just 18 months down the line, I wouldn't have believed them. He only goes because he thinks he's a volunteer and they need his help. Unfortunately the centre is 20 miles away so I pay volunteer drivers to take him, then pick him up in the afternoon. He can't remember anything about what happens at the day centre - he says he mainly stops fights and carries heavy things up and down stairs, but he's happy when I pick him up and the staff always thank him for his help. (There aren't any fights and the building is single storey.) He used to teach and enjoys helping people, so that's how I got him to go. On the mornings that he's not keen to go - mainly because he doesn't remember going there before - then I remind him that he's promised to help, they can't manage without him and they've even sent a driver for him. So far, it's working, but of course everyone's different and my husband always enjoyed company and likes to be in a group.
 

sarahsea

Registered User
Dec 19, 2017
66
I can't help feeling that although a contingency care plan filed with SS is a good idea if an emergency occurs the response will be little different to them being notified out of the blue, they will just trigger their emergency response.

SS may have logged some details of the PWD, as these are volatile I would have printed information prepared.
You could start with a completed >>>this is me<<< , I would add a schedule of current medication and where it is kept noting that it may be locked away. Details of GP should also be available.

You could use the Lion's Club 'message in a bottle' scheme.
You put a sticker on the inside of your front door to show you are a member.
Emergency services (and hopefully SS) will then know to look in your fridge where they will find an identifiable bottle

which contains
>>>this<<< (sorry if it's confusing it's designed to be folded) plus any other relevant info.

Several GP's and pharmacies have supplies of the bottle and form, failing that search lions international message in a bottle <your postcode>
That's a great idea. Thank you for posting.