What are my long term plans???

[Lady M]

what are your long term plans???? How many times have I been asked this recently!
OH has been hospitalised for 25 of the 30 days of April
Firstly with Sepsis....home for 2.5days of problems them read admitted via A&E with infection..........
Notes read Sepsis then developed a ‘chest infection’ ( when I quieried pneumonia I was told ‘ we don’t use that name any more , curious,,)
Each time in A and E was asked about ‘long term planing’ now today the consultant who has been treating OH again asked me ‘what are your long term plans’ ?
How on earth can I ( as main carer plus 4x daily visits from professional carers) can I make those plans....
I
Oh has lost his mobility BUT his mixed dementia appears slight to moderate!!!
He obvisoulsy has capacity, and would certainly not choose anything other than to be ‘in his own home’
What plans can be made when in the end it will be down to when either the carers cannot cope, I have a breaking point or yet again another health crisis!! Knowing this probably won’t be the last time he has hospital via A& E .
Whatever, SS will , I am certain, expect me to ‘keep calm and carry on’.
The difficulty of not being able to self fund!!!!
So I don’t have any long term plan..........will just have to wait!
As of today OH expected home in 2 days time,

 

[Grannie G]

When we live with dementia I doubt we have short term plans never mind long term plans @LadyM.

We live from minute to minute

 

[Shedrech]

hi @Lady M
might the question being asked give you the chance to say that you are at the end of your tether and actually, sadly, your short and long term plans are the same ... to have in place the best care for your husband which means residential care as you don't belive your supported living staff can provide the level of care he now needs .... and then ask the consultant to help you achieve this by recommending this 'plan' to Social Services

I wish things could be that simple for you

 

[margherita]

Hi @Lady M ,
Not being able to have plans, either long or short term, makes me feel as though I do not have hope or future.
I have given myself a deadline, which is January 1st 2020.
If by that date OH won't have agreed on having a carer at home some days a month, so that I can go away and have respite, I will leave him.
And come what may.

As your OH, mine still has some capacity and can understand how dangerous it would be for him if I went away.

 

[Lawson58]

Plans? What plans? How does anyone make plans?

I plan to get up in the morning, take the dog for a walk, get my husband to his appointments, do the housework, shopping, laundry, gardening.....................

Beyond that? I wish but nope!

 

[PalSal]

I try to lay groundwork and make plans as best I can.
Try to keep the OH team current it is a constant challenge to have people to work with....
Now that my OH goes two days a week to daycare I asked these folks who I really like very much if they would recommend respite care. They referred me to another place. I phoned them yesterday and am gathering information. It is of course, more expensive for dementia patients , but that is to be expected I guess. Anyway, I spoke to them and they seemed very good and come highly recommended by people I trust.
But it is a matter of cost.....so it cost about 256 CHF per day for respite care. So for a weeks vacation the cost is 1792 CHF that is a big cost, on top of my vacation costs. I cannot afford to go at the moment. (It has been 2 years since I went on real vacation, at that time his siblings and my kids shared the time with him) But maybe I can do something else, find someone to come in for the time. Who knows.
For me, I do try to lay down plans and try to know what my options are so that if necessary I have things in place. ( or in case, I have a windfall or sell that darn shotgun and have a little windfall) then I might have a holiday.

I hope you get the help you need so that you can plan .....Shedrechs solution sounds responsible to me. Getting your GP to help with a plan of action. I am a believer in footwork and planning ahead....when possible to avoid the panic of responding to emergencies. But clearly, it is sometimes how the system leaves us carers...in panic response mode.
Good luck we are all thinking about you.

 

[maryjoan]

How we wish that we could all have long or short term plans that actually could happen!
We cannot self fund either, and for people like us and @LadyM life can be a nightmare.
I was all set to walk out on all this at 2.30am when he was happily still not gone to bed for the night and I was furiously keeping my cool.
In the light of day, of course, everything is different.......

 

[AliceA]

My late friend, Pam used to say, make plans and God laughs. Life certainly does come up with the unexpected.
My grandmother used to say, God helps those who help their selves. Meaning we can just sit back and vaguely wait.

When my husband was out of work at fifty. I made three plans, well columns. Work in a month, a year and never. Put in each were ideas on how to manage, we also even thought of joining the Findhorn Community.
Some how this put us back in control psychologically. 9.00 on the dot he started applying, quite a thankless task at 50. Within three weeks from an unexpected source a job turned up, he was not the age they wanted but he got the job.

I have spent the last months searching and researching how we can get support, my age and health are not helping our situation. We cannot throw money at it either.
However I have collected information for several ideas they are hardly plans. One is how to manage care if only my husband is to be considered. I think this is fair to the daughter who would be left with the issue.
I have eyed up the various options for the two of us. The advised respite was unobtainable, unaffordable or just not suited. Having done the work an unexpected idea has borne flowers with the promise of fruit.
Watch this space!
I love the Arab advice, Trust in God .......... but don't forget to tie your camel.

 

[Lady M]

Well it’s me again! Firstly thanks to all who answered.
I now can say I have a long term plan. Never again to make the mistakes I have just made, never again to be consumed by guilt and react accordingly, never to be used by professionals for their own plans, never again to forget that I am really the innocent party( as is OH, he’s not to blame for his frailty and dementia) never again to except that I must always be the ‘giver’.......etc etc.
In short! This is the last time that when OH is hospitalized ( and I am certain there will be another time, sooner or later!) that I will accept that he is able to return home here...........
He really needs nursing home care.......I now realise that....... the 4xdaily carers are fantastic and have allowed us to be together ( well living in the same apartment) for the last nine months but as now my OHs world is ‘him’ and now , no not now immediately! I am just ‘someone’ to deal with things.......
Apart from all else I have now been banjaxked into administering one of his insulin injections, because if I didn’t accept to do same he would not be allowed home!!!!!!! As DNS do not do a 3xdaily call!!!!!!
This was made clear to OH by the hospital team!!
Take each day as it comes I am told....well like most TP friends we know in advance most of what tomorrow will bring........loneliness....grieving for a life time love that has disappeared.......and praying for the strength to continue!
So my plans are made........ it’s our 55th anniversary next week...who ever thought we would be as we are.....

 

[LadyA]

I love the Arab advice, Trust in God .......... but don't forget to tie your camel.

I like that too! It reminds me of the verse in the Old Testament, when they were trying to rebuild the walls of Jerusalem and were under threat of attack, which says "They prayed to God, and posted a guard."

 

[AliceA]

Good to hear, m'ladies! Xxx

 

[AliceA]

Well it’s me again! Firstly thanks to all who answered.
I now can say I have a long term plan. Never again to make the mistakes I have just made, never again to be consumed by guilt and react accordingly, never to be used by professionals for their own plans, never again to forget that I am really the innocent party( as is OH, he’s not to blame for his frailty and dementia) never again to except that I must always be the ‘giver’.......etc etc.
In short! This is the last time that when OH is hospitalized ( and I am certain there will be another time, sooner or later!) that I will accept that he is able to return home here...........
He really needs nursing home care.......I now realise that....... the 4xdaily carers are fantastic and have allowed us to be together ( well living in the same apartment) for the last nine months but as now my OHs world is ‘him’ and now , no not now immediately! I am just ‘someone’ to deal with things.......
Apart from all else I have now been banjaxked into administering one of his insulin injections, because if I didn’t accept to do same he would not be allowed home!!!!!!! As DNS do not do a 3xdaily call!!!!!!
This was made clear to OH by the hospital team!!
Take each day as it comes I am told....well like most TP friends we know in advance most of what tomorrow will bring........loneliness....grieving for a life time love that has disappeared.......and praying for the strength to continue!
So my plans are made........ it’s our 55th anniversary next week...who ever thought we would be as we are.....

Happy anniversary, make the best of your memories. We are approaching our 62nd.