Help! Am I panicking needlessly?

[Gwyneva]

I've been looking online for some advice / help - maybe this is the place...
My mother is already in residential care (with dementia, parkingsons etc.) she cannot feed herself any more, and is barely able to chat because she forgets her words so quickly. She spends most of her time alone in her room.

We have been told that mum cannot stay where she is for much longer, and my sister has found a really nice home, but it is so far from me that instead of visiting mum 2 or 3 times a week (or more) it would be at most once a week. I feel sure that mum gets a sense of security and reassurance from my frequent visits. Am I deluding myself? I know she is scared and lost at times, and she calms down a lot when I am there, and settles into a soft, smiley state. I am panicking now as I fear that the family try to move her to this faraway place - and the thought of this happening makes me feel so sad and sick.

My sister visits once every 5 weeks. She says if the home can look after her well then I don't need to worry about mum.

Even as I'm writing this I know that nobody else can answer this without seeing mum and me - but if you do have any comments I'd be pleased - thanks

 

[jenniferpa]

This is inevitably going to sound as if I am justifing my own position (which, of course I am) but I do think the quality of the day to day care your mother gets is as important (well close too, anyway) as whether she gets one, two or ten visits from you. You can't be there 24/7 in any case, so what happens to her when you aren't there is pretty darn important. If you are really worried about the distance, about the only thing you can do is try to find an equally suitable home closer to you. Of course, the ideal solution is a great home where you can visit easily, but my second personal choice would be a great home that wasn't easy to visit, if the alternative option was a not-great home that was easily accessible. As to your sister's comments about worrying: well, you're always going to worry, but it's easier to put it on the "back burner" if you know she's being taken care of as well as she can be.

JMHO

Jennifer

 

[Nell]

Dear Gwyneva,
Like Jennifer said, I think the answers you get might reflect our own situations, rather than be objectively aimed at you and your situation.

I have Mum just 10 minutes away, and like you, I feel my visits are valuable to her. True her care is very good and I'm glad of that - but it seems to me that the staff cannot give her the personal attention that I can.

I know I'm very fortunate to be in this position and I truly admire Jennifer and others who have to cope "long distance", because I don't know how I'd manage it.

Is there a possibility of another home nearer to you offering the same level of care as the one your sister has found?? On the other hand, I agree with Jennifer that a good home you can visit infrequently is still better than a poor home you can visit often. As your Mum is in care 24/7 she needs the best quality of care available - as do all our loved ones.

Perhaps your sister feels she has done her best and now you are rejecting that . . . .? Can you explain to her how much you appreciate the good qualities of the home she has found but that you also want to be able to visit regularly?? Is there a time limit on when your Mum must be moved? Could you tell your sister you will agree to the move if after a certain period of time (say 4 to 6 weeks) you cannot find anywhere just as good but closer???

Whatever happens, please know you are in my thoughts. Nell

 

[Brucie]

It's a difficult one because there are [at least ] two people to consider here - you, and your Mum.

This is in the context of your visits - not in saving your time and not visiting, which is clearly not in the formula here. It is doing the right thing for both of you, emotionally.

The person who visits more regularly is likely to gain a better feeling for the benefit of their visits for the patient than one who does not. If you feel that Mum gains benefit, then believe it, because that is also giving benefit to you, as you clearly believe that in the best of all worlds, you would visit more often, rather than less often!

However, we DO tend to delude ourselves, or at least believe we do, because we love the person concerned and want to maintain that closeness for as long as we can, even when, in the cold light of day, we may feel we are not helping at all.

So it IS possible that Mum won't notice.

You might consider trying to visit less often in the new place - you don't say how far it is. I have a 100 mile round trip to see my wife Jan, and have had to reduce from 6 days a week visiting, to going every other day. I don't like having to do that, but it puts pressure more on me than it does on her. I would like to think that she notices, but it is probably the case that she does not. However, if I leave it 3-4 days then I spend a whole visit before she is what is now her 'normal' self, and that makes me feel bad.

You can't be there 24 hours a day, 7 days a week, so it is indeed the quality of care she gets when you are not there that is critical.

There's no easy call here - you might just try varying your regime of visits as far as the new distances permit. Once a week is a fairly normal [and good] frequency of visiting - in my experience - for someone other than a spouse.

Good luck

 

[DeborahBlythe]

Tuppenceworth from Deborah

Lots of sound advice here already. Here is my take on things. Check out the inspection reports on the proposed new home on the CSCI website. www.csci.gov.uk How do they stack up? Convincing? Go and look at the proposed new home and test how long it takes to get there.

Go and look for homes closer to yourself, using the same technique. My view is personal, but I'd say try and find one that you think you can have some confidence in, closer to you. You are the person who has taken most care of your mum, by the sounds of things , and you are the person who will want to keep the closest check on how she is cared for in a new home. Even a home which is perhaps less impressive, but closer to you, may be better once your mum is there if you take a continuing close interest in her care. At the moment you will be leaving things to your sister to monitor and it doesn't sound as if she has taken a deep interest in this so far.

I don't think the mantra about the quality of care will give you any peace of mind if you can't get over there without exhausting yourself. What will you do if you and your sister have differing views about the care in the home she is proposing? Can you rely on your sister to pick up on things that worry you? I think you should tough this one out in your own favour because I think that your mum will have a better chance of thriving in a new home if you're the one who can take most interest in her care.
I wish you the very best of luck and send love to you and your mum.
Deborah

 

[Grannie G]

Having had my mother is both, a home which provided really disappointing quality care, and one providing superb care, I`d have no hesitation in opting for the better care, even if my visits were limited.

If I had visited every day, the visits would only have been a small proportion of each day. What happens during the remaining time?

To have been able to leave her with an easy mind is worth more than words can say.

Sylvia

 

[Brucie]

As always, a good selection of views here, and that is all that TP can provide - information to let each person make up their minds in their own situation.

 

[DeborahBlythe]

It's been remarked upon elsewhere on TP that 'good' care and nursing homes often depend very much on individuals and that means that the quality of a home can slip or rise fairly fluidly with changes of staff or ownership. That's why I wouldn't cling to the thought that the care home discovered by Gwyneva's sister is necessarily going to stand out permanently as the best option in terms of quality of care. Of course we all want our relatives to be living with excellent care standards, but just because a home ranks as good one month does not mean that it will stay that way.

The other point I want to make is that the quality of care in a home can be improved by relatives who visit regularly. The home knows that you are not going to go away, and if something is an issue one week, that you may want to raise it again next time you visit. The drip drip effect of concerned relatives keeping an eye on their loved ones shouldn't be underestimated. If you build up a good relationship with a home, praising the good it does and checking the issues you are less happy with, then I think you will actually raise the quality of care provided, by making the management realise, from your feedback, that you are genuinely anxious to improve care standards all round.

A good home will welcome your comments for good or ill, and make sure you are involved in influencing and reviewing your loved ones care plan. You can help raise the standards yourself without being there 24/7 but my guess is that this is much harder to do from a distance. I can't think of a better way of getting peace of mind than by being a regular visitor.

If you find that the care home your sister is keen on really does impress you, and that the journey is manageable once a week, and that you trust your sister to take as much interest in your mum's care as you have done, , and if there is nothing comparable closer to you, then of course your choice is less difficult, but I can't help thinking that you are the person who will make the most difference for the quality of your mum's remaining life and that the choice of her care should rest primarily in your hands. That's why I say, try to find somewhere closer to you, so that the task ahead of you is more manageable.

 

[Kayla]

I value the fact that my Mum is only 10 minutes drive away from me and I can easily visit her two or three times a week. If there wasn't a suitable home that close, then it would be necessary to compromise and I think it would be better for me to travel further so Mum could have good 24/7 care, than for her to have inferior care just for my convenience.
I'm not sure how much Mum is aware of how often I visit her. She apparently varies a lot from day to day according to how well she is feeling. It is reassuring to know she is nearby and I can reach her quickly in an emergency. Sometimes good homes are hard to find.
Kayla

 

[Gwyneva]

not panicking so much now!

Thank you so much to everyone who took the time to post their thoughts. I've just read them through, noticing how each person has brought different really useful aspects. Hearing about the personal experiences of others' is so helpful. All I want is for mum to be OK, and I feel much less worried about this now because - basically - if I can't find a home near me that is good enough, then I will somehow manage to visit mum at least once a week at the place near my sister.

Part of me wants to fill in some more details - like the fact that even if mum went to the home just 10 mins from my sister she would only maybe "pop in a bit more often" as she puts it - and certainly does not want to take on any of the continuity of mum's care.

But the important thing for me now is that even tho
I still don't know the answers, and I've no idea what's going to happen next - I have settled into accepting more how things are and seeing some possibilities for a good outcome. Before I was just full of dread - which literally felt dreadful! I feel much easier than I did 24 hours ago. THANK YOU everyone - you have really helped me.