1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Highland Crofter

    Highland Crofter New member

    Sep 16, 2019
    4
    Hello, wondering if someone can help. My Dad has dementia and Alzheimer's but is fairly early on. My Mum cares for him all the time. They were planning a trip to see me and my family but the thought of travelling so far was stressing my Dad out so much Mum is now planning to come alone. She's organising professional carers to come in twice a day plus again at bedtime. He has a button to press in case of emergencies too. Do you think that's enough? My brother thinks not but I am unsure. Hard to answer without knowing him and his exact symptoms but is there any guidance on this sort of thing? My Mum works so hard and really needs a break. TIA.
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,925
    N Ireland
    Hello @Highland Crofter you are welcome here and I hope you find the forum to be a friendly and supportive place.

    I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in your parent's own area. If you are interested in these, clicking the following links will take you there

    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    https://www.alzheimers.org.uk/find-support-near-you

    You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,035
    Yorkshire
    hello @Highland Crofter
    a warm welcome to DTP
    I'm sure your mum will appreciate her holiday .... and no doubt she has thought long and hard about arrangements for her husband
    if your brother visits them regularly he may have more of an idea of their situation .... there are no hard and fast rules about how many care visits will be needed, or possibly a respite stay ... maybe your brother could visit your dad while your mum is away, to set his and your mum's mind at rest; I'm sure your dad would appreciate his company
     
  4. Highland Crofter

    Highland Crofter New member

    Sep 16, 2019
    4
    Thanks to you both for taking the time to reply. I will take a look at those links today.

    Mum is pretty upset with my brother because he thinks she's doing the wrong thing by leaving him 'alone' for 6 nights. He phoned her and she felt he was interrogating her and eventually he put the phone down on her. So I'm pretty annoyed with him about that.

    I feel awkward because she's coming to see me, but I am positive my brother won't find time to visit my dad while she is away. Plus my mum knows better than anyone else what my dad needs. My mum has a good support network of both friends and professionals so hopefully she knows what she's doing. There are just a lot of unknowns because they've always resisted any sort of care package in the past. I'm trying to persuade my sister to go and stay for a night but it doesn't sound like it's feasible for her over that particular weekend.

    Part of the problem is he's recently been struggling with incontinence and was worried about how that would work staying in hotel rooms and travelling. He has pads but his manual dexterity isn't great so mum has to help him change the pads. My sister feels unsure of helping with that part of his care, which I can understand.

    I can't believe we're the first family to go through these problems though, which I why I came on here.

    Thanks for listening.



     
  5. Pete1

    Pete1 Registered User

    Jul 16, 2019
    106
    Male
    Hi @Highland Crofter, I agree with @Shedrerch it is difficult to advise as each person can present quite differently. I just wonder how Dad reacts now when Mum goes out without him generally i.e. shopping? I think Mum will be in the best position to make that judgement and I would imagine she has thought long and hard about it. If they have a good neighbour you could also ask them to keep a watchful eye out for your Dad whilst your Mum is on a well earned break.
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Hello @Highland Crofter

    I suggest a couple of points to consider when thinking of leaving a person with dementia alone in the house with carers visiting.

    Could they manage to get help in an emergency?

    If incontinent, would they be able to sort themselves out?

    Are they safe to use appliances? Even if there may be no need for them to use appliances, if food is made for them, would they be able to make a drink safely?

    Would they allow a stranger access to the home?

    However good the provisions for care, how many hours would the person with dementia be alone in the house?
     
  7. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,321
    Female
    South of the Border
    I am in pretty much the same situation. My OH and I have been together 9 years - he has had dementia for about 5 of these.
    HIs daughter, who lives upcountry, dismissed everything I tried to tell her - 'Dad has always been forgetful.'
    A couple of times in the last 18 months, I very much needed a break, and I took them by getting carers to come in - just as your Mum is doing - and it worked very well.
    Now, as he is worse, I took the bull by the horns and emailed the daughter saying I was going to see my baby grandson in Scotland, and OH's family were going to have to take up the slack here. I also offered expense payments. She jumped at the chance and came down for 5 days.
    She also brought 3 dogs and a partner which I was not thrilled about
    Everything worked excellently - much to my surprise, and she even gave the house a good clean before she left.

    So, what I am saying, is your Mum has to do what she thinks is best for her and your Dad at the time of the planning. What might work very well now, might need re thinking in a years time....

    I hope she enjoys the break - and tell her not to feel guilty at leaving Dad - she needs to have a break.
     
  8. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,919
    Male
    Bristol
    Welcome to DTP, Highland Crofter.
    IT is hard to say just what is needed without knowing your dad, as others have said. I left my partner a couple of times last this year just for two or three days, but she already needed two visits a day so I added two more for meals and one before bed to make sure she is settled. Her daughter did pop in for half an hour, and called me to let me know she was fine which let me relax and enjoy my trip. I think others already wrote something similar, but that was our experience for what its worth.
    I hope your mum has a good visit.
     
  9. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,035
    Yorkshire
    hi @Highland Crofter
    just wondering ... might your mum buy some pull-ups for your dad to try ... most high street chemists have them ... they go on just like pants and the sides can be torn to get them off, or pulled down like pants
     
  10. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    1,031
    These things can be done but it requires quite a lot of forward planning which it seems has been done in this case. I agree with other posters that it's difficult to make hard and fast rules around advice not knowing the individual problems.

    To give you some idea of how things can work, my husband and I left my mother-in-law on a couple of occasions while we went to the USA for 2 weeks. She had mixed dementia and was living on her own she had a carer visits three times a day. At that stage she was still able to wash herself of sorts and could change an incontinence pad her main problem was being provided with food and drink. There were no other family members who were able to look after her or even visit her whilst we were away . We only had the services of her niece and she wasn't prepared to do anything unless an emergency arose. My mother-in-law had her carelink and at that stage she was still able to operate it. The care agency knew we were going away and were able to either phone or email me whilst we're in the USA. Her freezer was stocked up with ready meals and she had a milkman delivering milk and other fresh produce during that time. My mother-in-law also refused to go out of the house anyway so there was never an issue around her wandering.

    Eventually, her condition deteriorated to such an extent, that she really couldn't be left for long periods, even though she was in her own home. Looking back now, the last occasion we went away, she probably had forgotten how to use her carelink pendant by then, so we were lucky not to have had a crisis.
     
  11. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,651
    Female
    For me the problem is that normally your dad has company more or less 24/7 from your mum, so he rarely has to cope alone or do anything like make a cup of tea or lock the doors at night. Even if he does accomplish these things himself, your mother is there to prompt/help if necessary. To go from that to 6 days alone except for a couple of carer visits is a huge leap.

    And if he has continence problems I am not sure three carer visits will work very well - what if he is dry when the carer arrives and then needs his pad changing ten minutes after she leaves? Long wait till next time.

    He may also be very anxious when left alone more or less all day. So while I agree it's really difficult to judge from a distance, from what you've said I'd be reluctant to leave him alone for that long with so little help.
     
  12. Highland Crofter

    Highland Crofter New member

    Sep 16, 2019
    4
    Thanks for all the input and advice. Just a wee update, Mum has managed to get some professional carers organised for three visits per day. She just needs to rally the troops in terms of friends who can also stop by to make sure he's OK. My Dad's dementia is not advanced yet so I think Mum's trip is doable. There are loads of what ifs but I am prone to worry so I will try to at least make the worrying productive by helping focus my mum's preparations! Thanks again for the comments, I'll keep you updated.
     
  13. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,919
    Male
    Bristol
    That's good news, Highland Crofter, I hope it goes well now. Please do keep us up to date and raise anything you need help with.
     
  14. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,035
    Yorkshire
    that's good @Highland Crofter
    hopefully your mum will be able to enjoy her holoday knowing your dad is being checked on
    and I think you're right to support and back-up your mum ... I'm sure that she will appreciate knowing that you are looking out for the 2 of them and happy to give support
     
  15. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    844
    Maybe your brother could care for your Dad as he is so concerned?Or maybe not.Your Mum is just as important as your Dad,she needs a break if she is to carry on caring for him.She knows your Dad best and is putting care in place.You can never eliminate all risk.
     
  16. Highland Crofter

    Highland Crofter New member

    Sep 16, 2019
    4
    Hello again. Yet another update. My Dad has now decided to come on the trip after all. Bit of a turnaround...

    While they're visiting I will talk to them both about a care package of some kind. Reading between the lines I think my Mum needs a proper break soon. Much more than I'd realised. My sister had a good talk with her on the phone this morning and Mum said "I don't know who I am any more, I'm just his carer. It's 24/7." I was quite shocked to hear this as I thought she had quite good outlets for a break.

    As someone pointed out earlier in the thread, what's feasible now might not be in a year... Hopefully the trip goes well and I can get a better idea of how to support Mum and Dad in the future.

    Thanks again for listening, folks.
     
  17. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,651
    Female
    I think that's the best outcome - that your dad comes with your mum. Hope this trip goes well, and your mum manages to get a break soon.

    Some members arrange a week or fortnight's respite in a local care home as a 'holiday' for their PWD (person with dementia) so maybe that would be an option in future? Some care homes also offer day care.
     

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