Looming diagnosis for both parents

[Millie11]

I actually work for Alzheimer's Society and did start my days as an adviser, is this a help or a hindrance!
I have spent the last 9-12 months supporting both parents one of which had a mini stroke some years ago and we have seen a decline in memory over the last couple of years. The other parent was showing signs of severe depression and anxiety and is being treated accordingly. It is apparent now that diagnosis's are looming for both of them over the coming weeks. They have always been independent and refuse all help (except from me). I have finally got them to agree LPA (which I am in the process of completing online) but they have backtracked on getting carers in; they would be self funding so it's incredibly difficult to arrange without their permission. They have admitted they don't see what I see and lets see what happens once we get through this bleep. They are on a lot of medication for other health issues and this is hit a miss; I do a weekly medication box for them both but it's up to them on a daily basis; a pivotal wouldn't work for them for many reasons. They have lost a lot of weight over the last 12 months, GP's are aware and again without the support of carers we can't manage this. Mom has lost all concept of meal preparation and dad does his best talking into consideration he never had to cook until the last few months. I can constantly throwing away out of date food...you can get an idea of the pattern.
My working experience has mainly been when 1 parent was diagnosed the other parent was on hand to be a carer, I have no idea what to do next when I have both of them. I have used all my knowledge as an adviser and now just waiting for a crisis to happen. Any pearls of wisdom would be appreciated.

 

[Bunpoots]

Hi @Millie11
I went down the route of introducing a carer to dad as a cleaner come gardener. It was summer at the time and we started with one day a week. She would mow the lawn and do a bit of dusting and hoovering and then have a cuppa and a chat. She's now up to 3 days a week (I do the other 4) and deals with whatever chaos dad has left in his wake. This includes laundry, making sure he's taken his pills, making him lunch and ensuring his used inco pads are cleared away and phoning me if she's concerned about him. Some days there's not much for her to do, other days she needs most of her 2 hours.

She has also accompanied him to a doctor's appointment when I was unable to do so.

Dad's not got to the needing personal care stage yet so I don't know how he'll react to that. But we have dealt with everything that's come along so far...

 

[Amy in the US]

Millie, welcome to Toronto, and I'm sorry you have needed to find your way here, and to hear about the issue with your parents. Having one parent diagnosed is difficult enough and I'm sure having both diagnosed, at the same time no less, is many more times stressful and distressing.

As far as persuading them to have help in, that is a challenge and we hear a lot of stories about this on TP. Many have success with introducing someone as a cleaner or similar, especially if there is something else you can reference they will accept, such as, you know the doctor has said you can't hoover with that bad shoulder, or this is a free trial scheme from the council, or this is a friend of mine who badly needs the extra work and please won't you help her, or even just say it is to help you. Those are just ideas, of course, but maybe something to get you started?

I'm sure you know all about shifting the blame and other compassionate communication techniques (if not, speak up and we will give you some links) but do give it a try. It's much better to blame someone else than have your parents blame you! Always shift blame to the doctor (handy) or a faceless authority or anywhere away from you.

I have been there with waiting for the crisis and it's not easy. Best wishes to you and your family.

 

[Millie11]

@Millie11, poor you. This may be a time when your knowledge and expertise as an adviser for AS will have counted against you a little, because you will know so much more what to expect than a lot of us have done on TP. This must be increasing your anxiety. Do you think your parents would accept the concept of having a 'cleaner' come in to take away the burden of the heavy housework from them? I have read of others on TP who have successfully managed this slight deception, because of course the cleaner has been a carer who does cleaning and anything else required. Hopefully someone who has pulled this off successfully will read your post and advise better than I. I feel for your double worry Millie, I have only one parent to worry about.

Th

@Millie11, poor you. This may be a time when your knowledge and expertise as an adviser for AS will have counted against you a little, because you will know so much more what to expect than a lot of us have done on TP. This must be increasing your anxiety. Do you think your parents would accept the concept of having a 'cleaner' come in to take away the burden of the heavy housework from them? I have read of others on TP who have successfully managed this slight deception, because of course the cleaner has been a carer who does cleaning and anything else required. Hopefully someone who has pulled this off successfully will read your post and advise better than I. I feel for your double worry Millie, I have only one parent to worry about.

Hi @Millie11
I went down the route of introducing a carer to dad as a cleaner come gardener. It was summer at the time and we started with one day a week. She would mow the lawn and do a bit of dusting and hoovering and then have a cuppa and a chat. She's now up to 3 days a week (I do the other 4) and deals with whatever chaos dad has left in his wake. This includes laundry, making sure he's taken his pills, making him lunch and ensuring his used inco pads are cleared away and phoning me if she's concerned about him. Some days there's not much for her to do, other days she needs most of her 2 hours.

She has also accompanied him to a doctor's appointment when I was unable to do so.

Dad's not got to the needing personal care stage yet so I don't know how he'll react to that. But we have dealt with everything that's come along so far...

Thank you for your comments & suggestions. I tried the route of a cleaner & how I would snatch someone’s hand off to do my cleaning, apparently mom still enjoys cleaning. I then tried the “they can help with medication & food preparation + anything else....” still no. We’ve had paramedics, Drs, memory service, OTs & CPNs telling them they need help & that I need them to have help & you’ve guessed still no

 

[canary]

Im sorry to say that I never managed to get my mum who lived by herself to accept carers. I even just went ahead and sorted them and presented her with a fait accompli. No joy, she wouldnt let them come in. I was pulling my hair out

Im afraid I had to wait for a crisis. Eventually she had a TIA, went into hospital and went from there into a care home where she stayed for the rest of er life.

Sorry, I guess you didnt want to hear that.

 

[Shedrech]

hi @Millie11
I'd say get LPAs done asap and send them off immediately to the OPG to get them registered - you will then have the legal authority to take over managing their affairs when an opportunity or a crisis comes
also, while they are happy to let you help, get as much info together as you can about their finances, and then be ready to organise everything to run as straight forwardly as poss - if they agree get online access now, that way you can set up DDs to pay care fees when you manage to get some care in place
think of having ready meals instead of having your dad cook, especially if he is OK using a microwave - I had all of dad's meals ready and in portions so he had little to do - I even put them in the fridge with all one day's meals together so he just had to take that day's eg lunch and eat - eg for lunch I left a tuck box with a sandwich, desert, fruit, snack and carton drink, all in single portion wrappers/packaging - and I only prepared say 4 days ahead, checking use by dates, so there was very little to go off - this meant I could see immediately what had been eaten or not too - and I left plenty of treats easily available and in plain sight, to keep up the calorie intake
would they cope with a blister pack of meds made up by the chemist - you will need to have pills delivered this way when you do get home care visits going (dad's carers were not allowed to give pills from a bottle or from packs I prepared)

 

[Yorkshire Pudding]

Mum has Alzheimer's and dad vasc dementia. We have struggled through the last few years, the same as you, as both quite vehemently declined help..'we don't need it, we can look after ourselves'. My sister and I have both dropped to working 4 days a week to make sure they are fed etc. mum was recently admitted to hospital for 1 night with suspected uti. This was a game changer. We have had follow up care from STUST team who have been brilliant. Mum and dad have slowly got used to people coming twice a day. Still quite reluctant to let them do anything other than give medication and make the odd light meal, however, they are letting them in and enjoy the chats which happen. This is in contrast to a year or so ago when we tried to organise meals on wheels....dad was very rude to them and wouldn't let them into the house. I have a meeting tomorrow to discuss ongoing care and fingers crossed we can find some suitable ongoing private carers. I would be inclined to try getting some carers in..maybe once a day initially? On the pretext that doctor has requested it, due to weight loss? Wants them to be well and is monitoring their weight?

 

[Georgina63]

Hi @Millie11 I have been in a very similar situation to you, where both parents were living at home, one with more advanced symptoms, but both with AD. One was unaware of the need for care and the other totally reluctant. It was a battle, but eventually we were able to persuade Dad that Mum needed help, and care began and was increased over a period of time. At the time, we talked to Dad about doing all we could to support them living at home together for as long as possible, and in order to do that Mum needed additional help. Might that be an angle to follow? It was not without its challenges as you can imagine, not least as Dad could get aggressive with carers. We did have a very strong team from our local memory clinic, including SW and OT and we were able to put in additional safety guards (such as a monitoring system) and they were very supportive and helpful, along with local GP and Alzheimers society. We also got community meals delivered and that eventually became a welcome arrival each day (though not always eaten). Re food, I would not be too concerned about what they are eating, just as long as they are and it's safe....the advice from their consultant was to have available food they liked as and when, eg finger food, which was a bit hit and miss, but one less thing to stress about.

It was all still a constant juggling act with various crises along the way and a lot of additional help and support from us, but we were able to allow Mum and Dad to stay at home for as long as was manageable, until a CH was the only sensible option, which is where they now are. I think one of the hardest things was accepting the huge responsibility of becoming the main carer, and being the 'grown up' of the family, having to make decisions on parents behalf especially when they eventually officially lacked capacity. It was very stressful managing the situation, the risks involved, along with family members who had different views on what should happen. My advice would be to get as much help as possible, as soon as possible for your parents and for you. I found the Carers courses run by the local memory clinic and AS invaluable. Your previous experience will be so helpful, but you are right, having both parents with dementia certainly complicates the situation, and when it's your parents, you have the whole emotional things thrown in too. Do let us know how you get on. Sending you best wishes. Georgina X

 

[Bod]

Cutting a long story short.
Both inlaws were diagnosed Alzheimers, at the same time.
By the time we had things under control, and the stress was removed, FiL I'm sure would not have got the diagnosis, he improved almost out of recognition.
The trick was to take over, for us, we moved in, and just got on with it! No arguments!
We were lucky in our circumstances, but our life's dream is on hold!
Your trick will be getting household help in.
There's a scene in "Driving Miss Daisy" the son is making it clear to the new chauffeur, just who pays his wages, and it's not Miss Daisy. The chauffeur, takes instruction from Miss Daisy, but it's only the son who can fire him.
Find a good care agency that really understands dementia, and are prepared to send in the same staff each day.
It won't happen over night, there will come acceptance, once they realise, it's good for them!

Bod

 

[Dayperson]

I really can't imagine what you are going through right now. I have just started working as a volunteer with the society and I know family members who have had the disease as well as mum who I am her carer. Nothing can prepare you for it because each case is completely different.