DAD - MND diagnosed now. What next?

[Positive vibes]

Positive vibes Thank you so much for sharing everything I and indeed everyone else wish you the very best in this journey. Remember we are all here for each other.

Richard

You are most welcome Richard. I do have a tendency to over-share, be a bit angst-ridden, over stuff. If it helps anyone else out there though, that's a silver lining.

I think we are in the calm before the storm phase. Awaiting contact from all sorts of specialists. And Dad is ploughing on doing as much as he can, with Mum's help, its a bit heart-breaking that he is worrying about putting on me, worrying that he shouldn't do it. But he's my Dad.....

I have a feeling that things will be frenetic and we will be helping him a lot, so, may not get the chance to post as much. It doesn't mean that I won't be poking around on here though, as things progress!

[Mary C]

Hi positive vibes,so glad your dad and family are now in the system.Hopefully your dad will get full rate of attendance allowance if you submit the DS1500 form with it( keep a copy of DS1500).Has your dad got a blue badge?
The hospice I am linked to are not doing day support at present due to covid. I do go on monthly zoom meetings arranged by MND Association for Warwickshire people who have MND and / or their carers.Useful for me to see others and we have a speaker and then free to chat together.
It sounds like the support network is coming together and the hospices often offer counselling for carers too..might be worth checking.
Try and keep doing the things that you like to and encourage your parents to have time to do what they get enjoyment from.
Its sunny here today and have a friend coming for a cuppa and chat.Planning the weekend for ride out to sit by the river with picnic if rain stays away.Want to get to local wood to see carpet of bluebells.After a week of hospital appointments I am ready to do something we enjoy.
Hope you all have a good weekend .
Best Wishes
Mary

[Positive vibes]

Hi positive vibes,so glad your dad and family are now in the system.Hopefully your dad will get full rate of attendance allowance if you submit the DS1500 form with it( keep a copy of DS1500).Has your dad got a blue badge?
The hospice I am linked to are not doing day support at present due to covid. I do go on monthly zoom meetings arranged by MND Association for Warwickshire people who have MND and / or their carers.Useful for me to see others and we have a speaker and then free to chat together.
It sounds like the support network is coming together and the hospices often offer counselling for carers too..might be worth checking.
Try and keep doing the things that you like to and encourage your parents to have time to do what they get enjoyment from.
Its sunny here today and have a friend coming for a cuppa and chat.Planning the weekend for ride out to sit by the river with picnic if rain stays away.Want to get to local wood to see carpet of bluebells.After a week of hospital appointments I am ready to do something we enjoy.
Hope you all have a good weekend .
Best Wishes
Mary

Hello Mary C

Thank you, it is all systems go now, for him.

I will definitely copy the DS1500; the lovely MND nurses are already applying for him to get a blue badge, so we are now awaiting the application forms for AA (which the nurses have also advised on).

Fortunately for us, Leicestershire have just (only just) started day support via LOROS for MND clients only - each Friday (short day hours 10-3 or 4pm I think) and have already contacted Dad. I think it's once a fortnight starting next week, but they offer additional physio sessions for him there, as well as a meal, quizzes, and even more importantly, the chance to talk to other people with MND. I think that will be vital for his mental well being, the opportunity to talk about what he is going through, as we can only imagine how he feels. He refused counselling for himself, but, I am thinking of having this for myself (other family too?) because I am open to support having been through some horrific stuff - and at the moment, with Mum awaiting her diagnosis, I think I will need it.

Really want to get the parents out and about now things are finally opening back up again (although we will probably stick to outdoors, distancing and masks in public, simply to shield them both).

Hope you get to see the bluebells, and enjoy the countryside, although it is persisting it down here today, so apart from taking Mum to a medical consult, we won't be venturing far today....

Hope you (and everyone else) have a great week end....

[Positive vibes]

A short update:

Had the serious talk with Dad and Mum, about activating POA, as per MND nurses suggestion. He agreed, as did Mum, although poor Mum focused on my worst case scenario example, and thought it meant he was going into the hospice again in the near future (or herself into a home), so had to calm her down and say that this probably won't happen (we hoped). I am determined to keep them both at home, because that is their wish, Dad couldn't even cope with the thought of 4 weeks in a nice hotel paid for by insurer's whilst building works are being done.

However, I know with the best will in the world, this may not pan out for them, as I am the only one being their carer and I am not superhuman. Going to do my utmost to make sure they stay where they feel most relaxed - at home. Got my brother to agree to see a solicitor so we can review their will, POA, etc and work out the best possible situation for safe-guarding Mum, as well as reassuring Dad and ourselves. It may well be that the simplest route is just activating POA, but, we have to make sure this is best for them.

I am determined that they make their own decisions - I really don't want to make those for them, so the POA will be on the back burner in case it is needed. I hate this, having to face this decision, but I am hoping it is only precautionary as at least Dad is mentally sharp. But in the background my mind is thinking of how we communicate effectively to ensure his wishes. He was doing his usual crosswords (does them daily) but when he asked me to figure one out I had a little difficulty in understanding what he was saying. He also reported noting the fasciculations in his legs yesterday, and his legs feeling weaker, which is really concerning me. This seems to be progressing more rapidly than we had thought......

[matthew55]

Just checking I it his hearing, brain activity or motor skills you're worried about,?

[Positive vibes]

MND nurses strongly hinted we activate POA, but, he doesn't hear well (won't wear hearing aid), speech is more slurred and difficulty understanding him yesterday, plus he says his writing is now starting to look more 'drunken spider' than legible, when he does his crosswords. So my rambling way of saying - hearing and motor skills. I am thankful at least his mind is sharp & want to keep it that way.

[matthew55]

You have just described me. May I suggest larger keypad;1 Boogie Board; large notebook paper version and large(thicker) marker pens. Also investigate eyeswitch inner ear control. I don't have shares in any of these but I should do. 😉 Oh and short nails on dominant hand

[Mary C]

Hi positive Minds,, such a lot for you to think about and to sort out.If your dad gets the Attendance Allowance awarded it will offer more funds that could be helpful for if your parents need carers to complement what support you are giving them.
( If you get a minute Age Uk do good fact sheets on funding care at home or in care homes.)

I too wish to remain at home so we have discussed when my care needs increase to have carers initially for mornings to help me with personal care.
My voice is also now slurring...have you had access to the speech and language therapist.?They can show your dad communication aids that might be useful in the future.They can also arrange voice recording if your dad is interested which might be useful in the future.

My writing is getting spidery too..at the moment I use a rollerball pen as doesn’t need as much pressure applying to write.
For the moment to ease the load on my husband we have somebody to clean for us and some help in the garden.We felt as my needs increase we need to get help.

The carers Association also told me they can provide a volunteer for three hours to sit with me if we feel it’s needed.( Not sure as they are volunteers if that’s more for companionship and not any personal care if needed).

You seem to be getting things done but don’t forget to get a bit of time daily for yourself.I encourage my hubby to get time for him to go for walks with friends, get a few hours in the garden or whatever he wants to do.

So another new day...let’s do the best we can in every situation.It’s a tough situation with both parents with diverse needs but you are certainly getting things done to help them.

Best Wishes
Mary

[richard]

Positive vibes Its so so important to get the LPOA’s before your parents lose the ability to make their own decisions. Reassure them that it will only be used when they cannot make their own decisions. I shall private message you.

Richard

[Positive vibes]

You have just described me. May I suggest larger keypad;1 Boogie Board; large notebook paper version and large(thicker) marker pens. Also investigate eyeswitch inner ear control. I don't have shares in any of these but I should do. 😉 Oh and short nails on dominant hand

Hi Matthew55

Hope all is going well. A bit late replying to you on this.

Thank you I have noted these down for him.

Maybe a cheeky suggestion, but, perhaps you should get shares!

[Positive vibes]

Hi positive Minds,, such a lot for you to think about and to sort out.If your dad gets the Attendance Allowance awarded it will offer more funds that could be helpful for if your parents need carers to complement what support you are giving them.
( If you get a minute Age Uk do good fact sheets on funding care at home or in care homes.)

Hey Mary C! Again, apologies for late reply: Still awaiting the forms for AA, and other stuff.... will ask Age UK for a fact sheet - thank you.


I too wish to remain at home so we have discussed when my care needs increase to have carers initially for mornings to help me with personal care.
My voice is also now slurring...have you had access to the speech and language therapist.?They can show your dad communication aids that might be useful in the future.They can also arrange voice recording if your dad is interested which might be useful in the future.

We haven't discussed formal carers yet, at the moment its me! The lovely MND nurses have contacted speech and language therapist, OT, physio and dietician for him, as well as someone coming to do his regular blood tests for him at home, with him due to have his lungs/oxygen levels tested at a local hospital.

My writing is getting spidery too..at the moment I use a rollerball pen as doesn’t need as much pressure applying to write.
For the moment to ease the load on my husband we have somebody to clean for us and some help in the garden.We felt as my needs increase we need to get help.

I shall look out for a rollerball pen, thank you! At the moment, Mum still manages cleaning, and they had gardeners in, not sure if they are continuing on that, so this might be me too.... definitely a good point for the future though.



The carers Association also told me they can provide a volunteer for three hours to sit with me if we feel it’s needed.( Not sure as they are volunteers if that’s more for companionship and not any personal care if needed).

I didn't know that, very useful, thank you. At the minute Dad feels he can drive to a day session held at LOROS, again this could be useful for the future. I am thinking, if I need to take Mum anywhere and we worry about leaving him on his own to cope if (when?) his symptoms or lack of mobility worsen.

You seem to be getting things done but don’t forget to get a bit of time daily for yourself.I encourage my hubby to get time for him to go for walks with friends, get a few hours in the garden or whatever he wants to do.

This is the difficult bit. If I am not there with them, helping, I am at home doing research, phone calls, organising appointments, updating family, i.e. not relaxed but still doing stuff or thinking about what stuff I need to do. Me time is walking the dog, or doing a bit in the garden, so finding it hard to relax....

So another new day...let’s do the best we can in every situation.It’s a tough situation with both parents with diverse needs but you are certainly getting things done to help them.

Best Wishes
Mary

Cheers Mary! I think once all the specialists have seen Dad, and he's had a few day attendance sessions which will be a good change of scenery for him, we will also start getting more used to the routine he wants/his needs. Sorting out any legal changes he wants (or may not want) is on the near horizon, and when that is done we can forget about it until it's needed.

I really want to focus on help he needs/wants, simple things like the one cup of hot water machine, where he can independently get a hot drink without needing to lift a heavy kettle (which he can't do now).

[Positive vibes]

Another update, in case you folks are wondering, what's going on:

Dad went to LOROS for a day on Friday (9-3pm), and seems more positive and impressed by what they offered him. He said he had exercise, physio session with a physio (allowed 8 sessions over 16 weeks, as it is once a fortnight visit), massage, quiz (he won!), free lunch, but, most important of all, the chance to compare notes with another chap (similar age, similar diagnosis), which has clearly done him the world of good.

I don't know what his new friend said to him, but, I would like to shake his hand (fist bump, elbow bump?), whatever he said has motivated Dad into asking for help, stuff to aid him day to day. Whereas before he wouldn't entertain the idea. Thank you, whoever you are, out there.

Also, his physio talked about getting something to help him out of bed. The equivalent to a plank of wood under the mattress with a rail attached to help him get up, and he is changing sides so he can use his stronger hand on the rail. A call received today, he is getting that Thursday! Hooray! We are removing the mattress topper (which is tempur and too hot for him, and nurses said that it effectively can make MND sufferer's feel stuck into the mattress too much because it moulds to your shape), so, I finally feel things are moving apace for him. What a relief....

Whilst Dad was enjoying all his new experiences (and so lovely that he went, after not wanting to go out anywhere other than supermarket these last few weeks), I drove Mum to the shops to order new bed and carpets for their other bedroom (the one that went up in smoke). Sadly, she did struggle with memory issues, having a one point a complete mental block as to what her pin was. Argh! Thankfully I had my card and could pay, else we couldn't have ordered half of what they needed....

Poor Mum was stressed and distressed, but, I said don't worry, why else am I here, as your sidekick? Asked her to just take a moment, a deep breath, and... 3 goes later we thought she'd get blocked, so whipped my card out.... I just made light of it, that it can happen to anyone, especially with all that's going on. I think she felt a bit better after that, but, I chickened out of taking her to the bank (she wanted to give me the cash back immediately bless her), but I thought of everyone staring at us like they did in the shop if she couldn't remember and said not to worry, we would sort it out later... What scares me is that, whilst choosing her bed, she couldn't grasp or retain the fact that the mattress she wanted, with a different base, was the taller option she wanted. Kept repeating that it wasn't high enough, so, myself and retailer had to keep pointing out the base she asked for, to the mattress.... we got there in the end though.

Nearly didn't go at all, as she lost her key, but luckily I remembered I had a spare Dad had given to me a few weeks before.... so, slightly chaotic, but another thing ticked off the list. And, unfortunately, I had to remind her to eat, as she forgot Dad was eating at LOROS, and again when she wondered where he was later in the afternoon. Wouldn't take their dog out until Dad came home, despite him asking her to take her out at 3.30pm....

To top off the chaos, spent last 2 nights being woken by poorly dog vomiting. The worst part of that? No. Not that it was 3am, 4.30am, or 1am the night before. No. Not the kneeling down cleaning it with me rubber gloves, etc. The worst bit, me, bleary-eyed in bed, waking to the sound of retching, clearly followed by the sound of lapping... bleurgh....barf... and queue me leaping out of bed. And the next day, thinking sickly dog had trailed in a bit of mud from the garden, only to find it was dog poop, trodden into a beige carpet. Argh, pale face.... barf. Bleurgh. Note to self, beige carpet and pet = massive mistake.

Next time, I am getting a budgie.... Or a stick insect. Anything with teeny tiny poops.... ha!

[Mary C]

Hi Positive vibes..never a dull moment with your parents.Have they got a key safe installed?Glad the day out did your dad good.So far the hospice I am linked to in Stratford Upon Avon can’t offer daycare due to covid restrictions.
Sounds like you need to know your mothers PIN number to prevent this situation in the future when she tries to pay.It’s a fine balance of her being as independent as possible and stressed due to memory issues.
Does your mom get Attendance allowance yet?
Can you use visual prompts, white boards to remind your mom to eat and that your dad is at daycare ?
My father had dementia and as a social worker I worked with many people living with dementia.It’s trying to find ways to remind people to eat, take medication ,even what day it is .All sorts of memory prompts available but often the simple prompts, stick it notes posted on the fridge etc can help.
Hope you are getting worn out as you do have a lot to manage .
Best wishes
Mary

[Ellie]

Positive vibes Really good to hear of your Dad getting on well at the hospice - see, definitely not the hospices of old! xx

[Positive vibes]

Hi Positive vibes..never a dull moment with your parents.Have they got a key safe installed?

No, I will ask them to try that....

Glad the day out did your dad good.So far the hospice I am linked to in Stratford Upon Avon can’t offer daycare due to covid restrictions.

About the only silver lining is that Leicester has just begun these again after lockdown.

Sounds like you need to know your mothers PIN number to prevent this situation in the future when she tries to pay.It’s a fine balance of her being as independent as possible and stressed due to memory issues.

I will ask both their permission for this - it could have prevented much distress for her...

Does your mom get Attendance allowance yet?

We have the forms (just filled in Dad's and posted on fast track with DS1500 for him). But, Dad felt we should wait, as he wasn't sure she was in need of it yet.... I am not so sure and think it needs to be done. He wants to wait until memory clinic proper diagnosis. We had a letter apologising for not seeing her within 6 months due to unprecedented levels/waiting list.

Can you use visual prompts, white boards to remind your mom to eat and that your dad is at daycare ?

We are trying to get her to look at the normal calendar, showing all Dad's appointments. Unfortunately, she forgets to look at this......

My father had dementia and as a social worker I worked with many people living with dementia.It’s trying to find ways to remind people to eat, take medication ,even what day it is .All sorts of memory prompts available but often the simple prompts, stick it notes posted on the fridge etc can help.

Now that's probably easier, must add stick it notes to shopping list (about to go out now). Worrying though that she couldn't follow a certain medication instructions properly. (Suppositories. Just. Don't. Ask.)

Hope you are getting worn out as you do have a lot to manage .
Best wishes
Mary

Thank you Mary, really useful tips for Mum, feel I am bouncing from one thing to the next (not unusual now).

I have organised things:

Notebook for insurer's to keep track of what's agreed, what builders/trades coming when, when to schedule carpet downstairs cleaned (soot from where firemen dragged out burnt contents), when to schedule carpet fitters, new bed, contents (repaired & cleaned, currently in storage). List of other things to buy from their compensation, e.g. bedding, pillows, etc. And a running 'to do' list for this.

Another one for Dad, noting advice on each visit from each specialist he will have, starting with MND nurses from LOROS. He has filled in wall calendar with all scheduled visits to LOROS (this is to aid all of us including Mum). With a running list now of things he wants to help him be independent. Separate ring binder for all letters/reports from all various contacts he is having. Starting with neurologists appointments, letters to local GP, letters to and from MND nurses. And information pack which has separate list for contacts with prompts for all their details. Plus needs list, and meds list.

Another notebook for Mum, detailing medical appointments, who she's seen when, etc. with another ring binder for her letters confirming appointments etc.
I think I will need another running list for her needs, although some things combine to help them both, e.g. hot water dispenser. Already have her meds noted in her notebook (with prescription list too). Belt and braces.

At least posting on here helps me gather all these thoughts together! Off to the shops now.... thanks again for this.