very forgetful sister wanting to care for my mother when I'm away

[CJinUSA]

My OH and I recently took a two-overnight respite trip, leaving behind a caregiver (whom we paid for) and my sister, who wanted to be here. We had a wonderful time away. I should add that in addition to caring for my mother, who is often incontinent and who is pretty far along in AD, we also have two older cocker spaniels. In advance of leaving, I prepared the dinner meals so that all they would have to do is cook the veggies or, in the case of the one meal, make some pasta. I even had the veggies all prepped. It seems as if all went well, except . . .

When I returned, my sister said to me privately that she really could have taken care of my mother by herself.

And when the caregiver arrived the day after my sister left, I learned, from her vantage point, that she had two people to care for, and that my sister immediately forgot everything she had told her.

Between them both, they lost - until I found it based on things I learned from both of them together - an important piece of mail we had been expecting and they notified us had arrived (on the day we left).

My sister *is* showing pretty clear signs of mental change, and she and her OH are, they say, in the process of finding a physician to do a baseline test of her. The same sister caused a kitchen fire in my mother's home back around 2004. She totaled two cars in her own driveway. And she is showing other signs of mental disarray.

I had hoped that having the caregiver *and* my sister there, things would have gone well. And in fact the caregiver had asked that a family member be here, so that if something drastic happened with my mother, the caregiver alone would not have to make calls or make final decisions. I totally understand that. But if the caregiver *and* my sister are getting forgetful, I'm in a pickle.

I think it went well enough for them to do this again, but I will want to have the caregiver here, too. I have hinted this delicately to my sister. This isn't really a question so much as a statement of my predicament. I have difficulty with finding opportunity for respite, and I don't want to have to be worried every time I go away about what disasters will await when I return! I will not place my mother in a care home (I'm not being critical of those who do, but I will not do this right now at least). I have two other possible sisters, but my schedule is too complicated to have to work around their schedules, and the one who might be willing to do it shows similar signs of mental deterioration. (I am the youngest child and probably have always been the most competent.) It's hard to find respite, I guess, under any circumstances. This isn't a rant but a loud sigh . . . .

 

[AlsoConfused]

This isn't a rant but a loud sigh . . . .

Understood ... and sympathies. I often feel that solving the practical problems AD brings would be a doddle, comparatively speaking, if only you didn't have to deal with human relationships at the same time.

I'm sure you'll come up with solutions that work- but it won't be easy.

 

[at wits end]

Hi CJ

I can understand how you feel, I have two cats (please dont assume I am making light of your plight by relating it to a cat story, its more a story about trust.) When my family and I go away I ALWAYS put the cats in kennels. they are lovely cats, and at least three neighbours have said to me they would look after them whilst I'm away. I look after all their cats when they are away too.

BUT my boys are rascals, and IF something happened to them whilst I was away i wouldnt want my neighbours to have to notice/worry/sort it. And I would feel so guilty that I didnt provide proper care in my absence.

You have to stick to your guns and tell your sister that its not that you dont trust her, its that the burden on her alone is more than you could bear. You would feel dreadful if something happened and she had to sort it all out.

I hope that makes sense. I had to make the decision to move my gran into a NH in a hurry in 2012 as I felt expecting someone to cover for me whilst i went to New York was too much. It is a big burden, and not all are ready for it.

 

[Raggedrobin]

Good way of putting it, a.w.e.

 

[CJinUSA]

Thanks very much for your replies. I do think it's a matter of trust. Some of it too relates to knowledge base available here. I need to feel confident that whoever is caretaking has a knowledge base sufficient to the tasks. So it's also a knowledge-and-experience issue related to trust, I guess. I have repeatedly tried to assist my three sisters in gaining knowledge about AD - have sent them to websites, provided book titles for reading, and offered information about my mother. They don't seem interested. And the one who stayed here while I was away explicitly said to me at one point, when I was trying to explain what we were planning to do to be prepared for what comes next (in terms of preparing for when my mother is no longer ambulatory), said to me that she really didn't want to think about what would happen in the future. So there is a kind of willing lack of knowledge.

I worry about the dogs getting out, it's true, and the caregiver said she never lets them out off leash, which is a good thing, and she did the feeding, which is also a good thing. One worrisome thing the caregiver did was that she indicated she sort of gave my sister a talking-to about how hard we work here. I *never* complain about the workload to the family, nor do I ever suggest it's a burden. It's not: it's our mother, and as I am the one who volunteered to have my mother here, and as I am the only one of us (in addition to OH, who has been tremendous) who is losing a part of my life to this disease for more years than I anticipated, it's my issue. So the caregiver was a bit out of hand, it seems to me. My sister could not possibly care for my mother; her husband seems angry that she doesn't do more for him, which I find really annoying about him (that he would complain to me). My sister is doing the best she can do with the cards she has. So I have to figure out how to rein in the caregiver, who wants to offer her opinions to my family, too.

Anyway, thank you for your replies and for listening. I think my mother doesn't have years and years but maybe two or two and a half years at most. Still, I do want to make sure I get away more often for respite. My OH has suggested that I can take an overnight here and there and he'll take over for me, which is one option. But I'd like to get away *with* him.

As you've said, AlsoConfused, we'll work it out . . . .

 

[Raggedrobin]

I'd go easy on the caregiver, sounds like actually she is only saying it like it is, it does sound like you are doing a huge amount holding it all together. I would think in her situation she probably spoke out of misguided loyalty to you, as she can see how much you do. Like any employee she probably found it stressful having a change of 'management' for the week?

 

[susy]

Reading this it seems the caregiver wanted to have a family member around just in case something happened. However it turned out she ended up caring for your sister too. Why not suggest in the future that the caregiver does this on her own yet has a telephone number of your family member(s) so she can contact any of them in an emergency. Also have your mobile phone number if she can't get hold of any of them. That way she doesn't have to make any decisions.
To be honest what decisions would she realistically have to make? Long term drug therapy would be the same. She will have been introduced before so she won't be a stranger. (Does this caregiver help out regularily?) the only decision would be if an accident happened and if she should seek medical help. Well in that instance I'm sure the answer would be yes if it wasn't a simple scratch etc.
hope that helps. Xxx

 

[Onlyme]

I agree about the caregiver. Perhaps your sister was telling her she was not needed as sister could have coped which prompted the conversation about all you do.

 

[Noorza]

To flip it slightly, what if you or your husband became ill and had to look after each other. We can't control everything and we can make ourselves ill trying to control other people's behaviour. It's just not possible to do, you can only really make the best of a bad deal, keep the carer and the sister and have much needed respite.

If you can get Power of Attorney to cover finances and health and welfare you will have more control even from the distance of respite. What if any rights does your sister have towards mum's property. I am thinking what rights the sister would have to ask the carer to leave.

 

[CJinUSA]

I'd go easy on the caregiver, sounds like actually she is only saying it like it is, it does sound like you are doing a huge amount holding it all together. I would think in her situation she probably spoke out of misguided loyalty to you, as she can see how much you do. Like any employee she probably found it stressful having a change of 'management' for the week?

Yes, and thank you for the confirmation. I feel certain it is a loyalty issue - this is the primary caregiver from the agency, and she knows me and the family quite well at this point. And I agree too with your good insight about the stress in the change in management for her. The fact is that we *are* doing a huge amount here. I am just unsure what telling my sisters this does for anyone. But you are right - it surely is loyalty speaking there, in addition perhaps to an acknowledgement of her own stress without me here.

 

[CJinUSA]

Reading this it seems the caregiver wanted to have a family member around just in case something happened. However it turned out she ended up caring for your sister too. Why not suggest in the future that the caregiver does this on her own yet has a telephone number of your family member(s) so she can contact any of them in an emergency. Also have your mobile phone number if she can't get hold of any of them. That way she doesn't have to make any decisions.
To be honest what decisions would she realistically have to make? Long term drug therapy would be the same. She will have been introduced before so she won't be a stranger. (Does this caregiver help out regularily?) the only decision would be if an accident happened and if she should seek medical help. Well in that instance I'm sure the answer would be yes if it wasn't a simple scratch etc.
hope that helps. Xxx

Yes, the primary reason she wanted someone here related to possible issues that could arise. One time, my mother did fall, and she had to get my husband (I was away at work) to help get her up. Other times, my mother has had TIAs, and we have to decide whether she is conscious or not during the events. She has a DNR order, and when we take her to the hospital, we have to decide whether to let them use anything intravenous or not. (The rules over here about patient care in emergency rooms are difficult, under such circumstances.) I have both POA (financial) and POA over the living well (health care POA). My sister does not, but a third sister does. (That is, four daughters, two with POAs.) The third sister was, in this instance, a 3-hour drive away, whereas I was a 5-hour drive . . . .

 

[CJinUSA]

I agree about the caregiver. Perhaps your sister was telling her she was not needed as sister could have coped which prompted the conversation about all you do.

Thank you. This is my surmise, too. I just worry that it might have come off as a berating of my sister. Two of the three caregivers express a sense that they can't believe my sisters are not here helping. I felt that way for the first four or five years. My mother then was still quite fun to be around, happy-go-lucky, and could hold a conversation. Why weren't my sisters there for her and me????? Then I found this website and started reading and reading, and I developed a new perspective on the invisibles, as my sisters sort of are. I still sometimes wonder where they are, but on the other hand, I am no longer angry about it - which is what astounds the caregivers. I have discovered that anger only makes my life more difficult. Besides, I volunteered to do this when my mother asked not to be placed in a nursing home or retirement community. Without my OH, I could not do this, but with him on board (we had cared for his mother), things are going pretty well. I just need more breaks, now that she is becoming more needy, and I worry a bit about how to do this.

 

[CJinUSA]

To flip it slightly, what if you or your husband became ill and had to look after each other. We can't control everything and we can make ourselves ill trying to control other people's behaviour. It's just not possible to do, you can only really make the best of a bad deal, keep the carer and the sister and have much needed respite.

If you can get Power of Attorney to cover finances and health and welfare you will have more control even from the distance of respite. What if any rights does your sister have towards mum's property. I am thinking what rights the sister would have to ask the carer to leave.

Yes, you are right - about control. I think this is the point AlsoConfused was making, that handling the AD is nothing compared to handling the people issues that dealing with AD requires of us. I do have the POAs for both finances and health, and I have been handling the financial matters (including taxes, health care, all else) since 2009.

My sisters were doubtful at first about it all, but they now don't even reply to the messages I send them about things, so I no longer send little messages about what I am doing here and there. I showed one sister recently the records I compiled for this year's taxes, and I guess she realized for the first time how much I've been doing. But at this stage, they are happy to have me do everything. I think what amazes the caregivers is that I never express anger to them about being saddled with all this while they (my sisters) are off having vacations and just having their lives. I can't imagine *not* taking care of my mother; if they don't want to do so, that is their lookout. I know I will, when my mother breathes her last, have done everything possible to make my mother's last passage comfortable. I don't quite know how they can live with themselves, but it's not my concern, if you see what I mean . . . . Thanks so much for the reply.

 

[copsham]

When I read TP posts I continue to read them as if it is all so new to me. I am amazed at what you are doing in such good spirit! It also sounds really positive that you are clear about the need to have planned breaks.

Like you I have nurtured the idea that my 3 sisters choose not to be involved; it is their choice and I have made mine. I think this is the least stressful way of dealing with invisibles. There is enough angst around dementia without creating "invisibles angst".

One thought came to mind ... "So there is a kind of willing lack of knowledge".... If two of your older sisters are showing memory problems they may be keeping your mother's situation at a distance for fear of their future(?)

On another note on seeing you are in Pennsylvania - my mothers last trip abroad was to Pennsylvania at a time when her dementia was just beginning. She bought an Amish doll there and it is her one proud possession of the past!

 

[CJinUSA]

When I read TP posts I continue to read them as if it is all so new to me. I am amazed at what you are doing in such good spirit! It also sounds really positive that you are clear about the need to have planned breaks.

Like you I have nurtured the idea that my 3 sisters choose not to be involved; it is their choice and I have made mine. I think this is the least stressful way of dealing with invisibles. There is enough angst around dementia without creating "invisibles angst".

One thought came to mind ... "So there is a kind of willing lack of knowledge".... If two of your older sisters are showing memory problems they may be keeping your mother's situation at a distance for fear of their future(?)

On another note on seeing you are in Pennsylvania - my mothers last trip abroad was to Pennsylvania at a time when her dementia was just beginning. She bought an Amish doll there and it is her one proud possession of the past!

We have interestingly parallel situations, you and I, don't we? It took me a few years to get over the fact that my sisters don't help and, in effect, don't really seem to care about what happens here. I realized I was getting myself all worked up, and if I wasn't going to express my upset to them (and I didn't, and haven't), the only person that negative emotion hurt was *me*! It seems as if you have come to the same conclusion - it's not worth getting upset about, as it's not going to change, and for whatever reason, they are not going to be helping here.

I am very interested in your comment about my sisters and distancing. The oldest seems the most clear-headed of the three. The two middle ones are showing signs, in my estimation, with the one closest in age to me showing sufficient signs that I did gently talk with her about seeing a doctor and establishing a baseline. So she and her OH are - they say - going to find a doctor and get her checked out. It is she who wishes to come and stay alone with my mother when we go away.

Fortunately, I have the instance of the missing mail - the caregiver and she *both* forgot what "safe place" they had put this special delivery letter we'd received - to illustrate to them both that just one person can't handle this. We do have a complicated household, with two dogs, very public location, very large historical and rambly house, etc. The caregiver comes again today and I just can't decide whether to talk with her or not about the things I suspect she said to my sister. I am likely to wait until we do go away again and then just suggest that whatever goes on here is our business and my sister need not be asked to worry about it, or some such.

And finally! We are in the middle of Amish country. We use a farmer's market that one family brings good to, regularly, and they travel by their horse-drawn cart. It's like stepping back in time . . . . I love it that your mother has a good memory of the visit here.

 

[copsham]

I love the synchronicity of it all. Finally my cousins wife is a nurse in a dementia nursing home and lives in Springfield Pennsylvania!!