You’ve got to laugh...

imsoblue

Registered User
Feb 19, 2018
355
0
Thanks for the well wishes. I need a whole forest of redwoods!!! You are not going to believe what happened! My co-worker and I were strolling in our new environment and That One called me in the middle of the afternoon. OH had fallen in the shower. My first thoughts: he died, he has a broken limb, he is in the hospital, I have to get back on a plane, etc. That was probably in 3 seconds. He’s fine. The Other One (her sister who never contacts ME anymore or even contacts her dad and won’t see him unless That One comes with her, etc.) was on her way to visit him so she found him. She couldn’t get him up so called the fire department. AND, the Other One wanted That One to call ME to see if they could return him to my house (two hours away from them) and set up 24 hours sitters. Yep, you gotta laugh. WHAT? I am across half the country and when they are confronted with what I do on a daily basis they cannot handle it for 5 days. I did not have the wits about me that I needed to reply they way I wish I had. Thought of “Welcome to my world...oh, and wait until he becomes really, really cranky!” “Welcome to the world of being a carer for a physically and mentally challenged loved one. I’m sorry you don’t want to be in that world. Unfortunately it is your world. He is your dad.” And “I’ve been telling y’all about this” and the best would have been “Did you take him to a hospital and have him see a doctor?” The last one is what That One said to me when I sent a text relaying a particularly terrible weekend. Also, a few weeks ago I called That One when her dad thought he could walk through the garage late at night and I needed reinforcements to stop him because I feared the danger of so much concrete. She literally put me down saying, he has to live and if he falls, he falls. Now they are wearing my shoes. But don’t think they are aware they are mine. They think this is new and their place is inappropriate for him. These girls are 42 and 40 years old!!!!! I said no, he cannot go back home. (How would that make HIM feel. Oops, you are not what we thought you were. You are too much trouble, you must leave and strangers will keep you.) “But he likes the new sitter (I have someone come 3 days a week.” I said she has other jobs. I said I don’t think her dad would like that.
I was literally shaking. I know they are clueless to this is my life, otherwise, why would she have called?
I called two of my sons/dils later for advice because I was not in a place of sensible thinking. I knew and they confirmed, do not say “I told you so.” Stick to your guns.
I guess my thoughts of future travels will not include them. And putting him with sitters is costly and downright sad. At least I have all of you. Thank!
 

imsoblue

Registered User
Feb 19, 2018
355
0
Oh forgot to tell them “wait for the incontinence!” So sad to wish that upon others!
 

carolynp

Registered User
Mar 4, 2018
569
0
Thanks for the well wishes. I need a whole forest of redwoods!!! You are not going to believe what happened! My co-worker and I were strolling in our new environment and That One called me in the middle of the afternoon. OH had fallen in the shower. My first thoughts: he died, he has a broken limb, he is in the hospital, I have to get back on a plane, etc. That was probably in 3 seconds. He’s fine. The Other One (her sister who never contacts ME anymore or even contacts her dad and won’t see him unless That One comes with her, etc.) was on her way to visit him so she found him. She couldn’t get him up so called the fire department. AND, the Other One wanted That One to call ME to see if they could return him to my house (two hours away from them) and set up 24 hours sitters. Yep, you gotta laugh. WHAT? I am across half the country and when they are confronted with what I do on a daily basis they cannot handle it for 5 days. I did not have the wits about me that I needed to reply they way I wish I had. Thought of “Welcome to my world...oh, and wait until he becomes really, really cranky!” “Welcome to the world of being a carer for a physically and mentally challenged loved one. I’m sorry you don’t want to be in that world. Unfortunately it is your world. He is your dad.” And “I’ve been telling y’all about this” and the best would have been “Did you take him to a hospital and have him see a doctor?” The last one is what That One said to me when I sent a text relaying a particularly terrible weekend. Also, a few weeks ago I called That One when her dad thought he could walk through the garage late at night and I needed reinforcements to stop him because I feared the danger of so much concrete. She literally put me down saying, he has to live and if he falls, he falls. Now they are wearing my shoes. But don’t think they are aware they are mine. They think this is new and their place is inappropriate for him. These girls are 42 and 40 years old!!!!! I said no, he cannot go back home. (How would that make HIM feel. Oops, you are not what we thought you were. You are too much trouble, you must leave and strangers will keep you.) “But he likes the new sitter (I have someone come 3 days a week.” I said she has other jobs. I said I don’t think her dad would like that.
I was literally shaking. I know they are clueless to this is my life, otherwise, why would she have called?
I called two of my sons/dils later for advice because I was not in a place of sensible thinking. I knew and they confirmed, do not say “I told you so.” Stick to your guns.
I guess my thoughts of future travels will not include them. And putting him with sitters is costly and downright sad. At least I have all of you. Thank![/QUOTE

Well your post says it all really! Even your awareness that a few days of grim reality will not make these two women any more conscious of your actual situation and your incredible, devoted care of their father! Wouldn’t it be nice if they acknowledged their mistake?! Not going to happen. As you say, as far as they are concerned, this is a new development that has been sprung on them.

I am so proud of you and deeply, deeply relieved you handled it all so brilliantly.

Like @grahamstown I am of course so sorry this has happened. But at the same time I nurture a faint hope that at least SOME of the nonsense you have been putting up with, the bright ideas about two weeks in rehab hospital and so on, will cease now as if by magic.

Enjoy your break at your conference! I’m proud of you and proud too of your sons and daughters in law for supporting you so brilliantly at crunch time.
 

carolynp

Registered User
Mar 4, 2018
569
0

Well your post says it all really! Even your awareness that a few days of grim reality will not make these two women any more conscious of your actual situation and your incredible, devoted care of their father! Wouldn’t it be nice if they acknowledged their mistake?! Not going to happen. As you say, as far as they are concerned, this is a new development that has been sprung on them.

I am so proud of you and deeply, deeply relieved you handled it all so brilliantly.

Like @Grahamstown I am of course so sorry this has happened. But at the same time I nurture a faint hope that at least SOME of the nonsense you have been putting up with, the bright ideas about two weeks in rehab hospital and so on, will cease now as if by magic.

Enjoy your break at your conference! I’m proud of you and proud too of your sons and daughters in law for supporting you so brilliantly at crunch time.
 

Mudgee Joy

Registered User
Dec 26, 2017
675
0
New South Wales Australia
It really could not have happened at a better time and the SS (sweet sisters ) must have a better appreciation of your great worth !!
well done -as the English say “carry on”.
Hugs and blessings
 

carolynp

Registered User
Mar 4, 2018
569
0
It really could not have happened at a better time and the SS (sweet sisters ) must have a better appreciation of your great worth !!
well done -as the English say “carry on”.
Hugs and blessings
Yes absolutely right MJ my thoughts exactly (re it couldn't have happened at a better time) but I wasn't quite brave enough to say it!!! Well done you!!
 

imsoblue

Registered User
Feb 19, 2018
355
0
I'm home. It was a great work trip for 5 days. Who wouldn't want to be in Palm Beach, Florida? After the phone call last Tuesday from the Sweet Sisters (SS, also known as OH's daughters) wanting to send him home with full time sitters because he fell, I checked on them Wednesday and all was well. It really is the Other One who can't handle her dad in this condition AT ALL. They had also moved his bed downstairs. So, That One lives in a 2 bedroom condo with both bedrooms and complete bath upstairs. Half-bath (no shower) is downstairs. OH fell in the shower upstairs. HE STILL HAS TO GO UPSTAIRS TO SHOWER. Sleeping in a bed in the main living area does not keep him from falling in the shower. The Other One has now become a bigger problem in my heart and mind. I should also mention she and her husband own the condo That One lives in. The Other One found OH in the shower and called the fire department Immediately. I asked him and he told me, she never even TRIED to get him up. Never tried??? I could cry. Do you know how many times I have pulled him up from the floor, ground, shower, even restaurants? A friend said, maybe she's right and you're wrong. I know for a fact I would attempt to lift an automobile off a total stranger if needed. I am done with both of these SS.
Another funny thing: That One and OH are investigating having a stair lift (a chair that takes you up and down stairs) installed in the condo ($3,500) so he doesn't fall down the stairs. Remember the Other One owns the condo that her SS rents and she doesn't know about this. BUT, it is the Other One who doesn't want her dad staying there because of the stairs. Mind you, the Other One has a 3 bedroom house with one daughter. The 3rd bedroom is a playroom. The Other One would never, I mean never, allow her dad to stay with her, but also is totally "worried and concerned" about the stairs at That One's who welcomes him.
Son #2 and his family spent the weekend with us and he asked me how OH did with SS. Besides the shower fall, I told him, I will never know. They will never share what went on.
My conference was about research and equity and children, but I managed to sit in on a session on story telling. Story telling can be healing. Reminded me of what TP is all about. And in reference to that, I started a new thread on the BOOKS forum. Come on and join me while I read The Leisure Seeker. It will make you laugh out loud. The movie has been released in the USA and I'll see it after I finish the book.
Missed writing, but have been checking in by reading posts during conference sessions.
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
It really is a worry leaving our PWD with someone else to care for them. I worry about it all the time with the result that I have cut down on going out in the evening because that is the bad time, sunsetting and restlessness with a risk of drinking alcohol. Planning a meeting with an old friend proved a step too far for my OH this morning so I took over the task which is not the easiest. He has forgotten when or where we are going on holiday in three weeks time but I only had to mention it to try and fix this meeting with friend. Otherwise I don’t tell him now until an event is imminent.
 

Mudgee Joy

Registered User
Dec 26, 2017
675
0
New South Wales Australia
I would like to consider temp respite care - but the sundowners is a real problem and I can’t imagine anyone one in the care home being there and saying the right things etc
And when in a care home my OH might forget the little things he can still do - like make a cup of tea- that is a worry.
The homes here want them to stay minimum 2 weeks - they seems huge !! Surely s few nights initially !?!
Any thoughts
Thanks MJ
 

carolynp

Registered User
Mar 4, 2018
569
0
I would like to consider temp respite care - but the sundowners is a real problem and I can’t imagine anyone one in the care home being there and saying the right things etc
And when in a care home my OH might forget the little things he can still do - like make a cup of tea- that is a worry.
The homes here want them to stay minimum 2 weeks - they seems huge !! Surely s few nights initially !?!
Any thoughts
Thanks MJ

Hi M J @MudgeeJoy this is a worry for me too, for the same reasons. Apparently here in Perth one of the care companies offers respite care in the home. Would that perhaps give you a few days’ break, if it’s offered where you live?

I haven’t explored it yet, it all seems too hard at the moment. And I imagine the cost would be very high, though I don’t know that for a fact.

Two of the people who have done work for me, one being a cleaner and the other a gardener, both women over sixty, have also suggested they could care for him in the home, coming in to cook and check on him, if I wanted to go away. I think he would still be all right at night by himself.

But it’s already getting to the point where the break I might thus get might not be worth the repair job needed when I got back. This used to happen when our disabled son went to camp or to respite care - he’d always get a virus or an infection that would give me weeks of extra care when he got home again. It was a real toss up whether it was worth it.

In the last three weeks, I’ve had to take over his heart pills, his water consumption and his breakfast cereal, because otherwise he gets constipated. Who could look after this sort of thing the way I do? How extravagantly would everything fall apart if I went away, and how likely would it be that I could get back on track when I got home?

The women I’ve mentioned would probably be fine for a few days but what if one or both got sick, or my husband did? Really the plan would require a co-ordinator, and I couldn’t ask a friend to take that on.

All these issues! And for a man who is still managing very well for himself, going to the office each day (he’s retired but has a shared facility at the university), self care still fine, I.e., he can dress himself and shave, shower. However the dentist noted yesterday he’s no longer actually cleaning his teeth, and they are getting bad. So does this mean the self care is starting to slip?

Sorry MJ I didn’t mean to be so long winded! But the question you’ve raised is the sort of thing that I too am exercised by; and because of the worries I end up doing nothing.
 

imsoblue

Registered User
Feb 19, 2018
355
0
Hi M J @MudgeeJoy this is a worry for me too, for the same reasons. Apparently here in Perth one of the care companies offers respite care in the home. Would that perhaps give you a few days’ break, if it’s offered where you live?

I haven’t explored it yet, it all seems too hard at the moment. And I imagine the cost would be very high, though I don’t know that for a fact.

Two of the people who have done work for me, one being a cleaner and the other a gardener, both women over sixty, have also suggested they could care for him in the home, coming in to cook and check on him, if I wanted to go away. I think he would still be all right at night by himself.

But it’s already getting to the point where the break I might thus get might not be worth the repair job needed when I got back. This used to happen when our disabled son went to camp or to respite care - he’d always get a virus or an infection that would give me weeks of extra care when he got home again. It was a real toss up whether it was worth it.

In the last three weeks, I’ve had to take over his heart pills, his water consumption and his breakfast cereal, because otherwise he gets constipated. Who could look after this sort of thing the way I do? How extravagantly would everything fall apart if I went away, and how likely would it be that I could get back on track when I got home?

The women I’ve mentioned would probably be fine for a few days but what if one or both got sick, or my husband did? Really the plan would require a co-ordinator, and I couldn’t ask a friend to take that on.

All these issues! And for a man who is still managing very well for himself, going to the office each day (he’s retired but has a shared facility at the university), self care still fine, I.e., he can dress himself and shave, shower. However the dentist noted yesterday he’s no longer actually cleaning his teeth, and they are getting bad. So does this mean the self care is starting to slip?

Sorry MJ I didn’t mean to be so long winded! But the question you’ve raised is the sort of thing that I too am exercised by; and because of the worries I end up doing nothing.
MJ and Carolynp, as a relatively new carer I have been told repeatedly that you should look after yourself. Physicians, relatives, counselors, and friends have stressed this repeatedly. You will be no good to your PWD if you have become consumed with being a carer. It isn't selfish, it's survival. My 5 days away gave me the break I needed and wasn't even aware how badly I needed it. I get a break by going to work 5 days a week. You do not want to crack from the constant stress that sometimes you may not even be aware of. (I'm sure while we're sleeping we are listening, just like we did when we had young children in the home.)
I have some friends getting married in another town this weekend. I am venturing to the wedding however, I am leaving him alone. It will be for about 8 hours. He's also alone 8 hours today as we only have a sitter 3 days a week. I feel like if I skip the wedding (one we would have gone to together), Dementia wins. It will have taken both our lives. I am battling that thought internally too. I'm trying to continue as best I can. Thank you for being there for me. Let's do it Girls!
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
Subterfuge has reached ridiculous proportions. All the alcohol has been removed from the house except for one supposed bottle of rosé wine which has been diluted with non alcoholic wine. It has sat quietly under the stairs for a while not being touched, or so I thought. I found it half empty today and decided to top it up with more non alcoholic wine so now it is very low alcohol indeed. He can drink that and I am fairly convinced that he won’t realise and that will make him feel happy. It seems that it is the idea of alcohol that is the thing not the reality because he has been drinking non alcoholic drinks every day for the 3 weeks he has been taking donepezil, or so I fondly thought. Somehow he must have been getting it. You simply have got to laugh and get on with it because I have the daily ‘going to the pub for a half’ to contend with and I can do without the extra arguments. It has become a game of cat and mouse!
 

Mudgee Joy

Registered User
Dec 26, 2017
675
0
New South Wales Australia
Hello all - and thanks for the advice on respite. My husband is less capable I think than some of yours but can still shower and dress ( if you supervise) .
I’m with you Carolymp !!Re the concern about the person coming back ill! A flue germ causes great delerium !!
I think I will pursue the suggestion of care at home - they tell me it’s expensive but say $500 - $700 a night - ?? Holidays are expensive - I could get relatives to cover the days with visits ( a sister etc)
So now I just need a good “excuse “ to go somewhere . Perhaps a dementia conference - or something much more relaxing - walking in the mountains !!

Thanks and Yes @Grahamstown and @imsoblue - we need to care for ourselves - but must tread carefully !!
(Someone in Sydney or other big place should have a D care home disguised as an upmarket Hotel !! )
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
I understand your reticence about going away. On the last 2 occasions I left OH to go away (each time for 3 days) I got back to discover that he had made some dreadful choices that took me 6 months to unravel and I still feel that I am living with the consequences. Im actually scared to go away again.
 

carolynp

Registered User
Mar 4, 2018
569
0
I understand your reticence about going away. On the last 2 occasions I left OH to go away (each time for 3 days) I got back to discover that he had made some dreadful choices that took me 6 months to unravel and I still feel that I am living with the consequences. Im actually scared to go away again.

Oh @canary thanks for this, I feel less the prophet of doom when I read what you say. There is absolutely no knowing what may arise in one’s absence, leaving aside all the looming bacteria and viruses.

My other thought - and this applies just to me, I don’t mean to generalise when others are planning much needed breaks - is that I feel I am just starting to get used to the “new normal”, I’ve got a sort of routine going, with things like gym that I enjoy, and lovely TP. I know there’s no getting ahead of the game, I understand that, but I really am quite comfortable, with less in the way of the miseries, that I was. And I’d like things to stay that way, even if only for a bit. I don’t want to upset the apple cart for the sake of a few days away which I’m not actually craving - though at the same time I do appreciate that the need for a break is often not felt, until one actually gets away, as @imsoblue says.

And thanks too, @Mudgee Joy, for what you say. Sounds like a plan! Especially as you think your OH is further along, with the help he’s needing now - it may be wise to carve out an opportunity and grab your chance.
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
Oh @canary thanks for this, I feel less the prophet of doom when I read what you say. There is absolutely no knowing what may arise in one’s absence, leaving aside all the looming bacteria and viruses.

My other thought - and this applies just to me, I don’t mean to generalise when others are planning much needed breaks - is that I feel I am just starting to get used to the “new normal”, I’ve got a sort of routine going, with things like gym that I enjoy, and lovely TP. I know there’s no getting ahead of the game, I understand that, but I really am quite comfortable, with less in the way of the miseries, that I was. And I’d like things to stay that way, even if only for a bit. I don’t want to upset the apple cart for the sake of a few days away which I’m not actually craving - though at the same time I do appreciate that the need for a break is often not felt, until one actually gets away, as @imsoblue says.

And thanks too, @Mudgee Joy, for what you say. Sounds like a plan! Especially as you think your OH is further along, with the help he’s needing now - it may be wise to carve out an opportunity and grab your chance.

But how does anyone make long term plans when you have no idea of what the situation is going to be like?

I have something important coming up in January next year when I would like to be in Canberra for about three days.

Husband, dog, two cats? Eight months in the future?

The Australian War Memorial conducts a short 'Last Post' ceremony every evening when they commemorate the life of a soldier lost in conflict and my grandfather is to be honoured in early January. My two children and granddaughter are planning on being there and I think a couple of family members from Brisbane are going to attend.

I would love to be there but I really can't even think about it at the moment. And it's not really the Alzheimer's that is the problem but
My husband's physical health is failing. So I agree. Time to grab an opportunity now if you can.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Yes, there is no knowing what the future may hold. I think that you have to look at the individual situation that you are in at the moment. Im like @carolynp and have carved out some "me" time (in my case knitting group) and I too dont want to upset the apple cart. Other people may be able to go away either with their PWD, or leaving them with family/friends/carers/care home. I know that I cant go away on holiday with OH as he really, really, needs his routine. I had to go on a 200mile journey recently to take mums ashes back to East Anglia and scatter them and I had to take OH with me. It was only for 2 nights away and I made it work, but it was not easy and it certainly wouldnt have been a holiday. OH is not far enough down the line for respite in a care home and leaving him with family/carers popping in was what I did before when he took advantage of the fact that I wasnt there and made his dreadful choices.

So, you see, for me, I wont go away and leave him, but my situation will not be the same as other peoples.
 

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