Update - Dad's in Respite

[gill@anchorage5]

Good evening all

Haven't posted since August when I moved back in with Mum & Dad after Dad came home from the assessment centre, as I have no internet access there. But did promise an update when I was able to do so. I have really missed the support of TP during a time when I really needed it!

We've had severe highs & lows over the last couple of months, the good periods are sadly getting more rare now, but during these times he amazes me how well he can do, standing unaided, reading the paper, holding a conversation, using a knife & fork to eat a meal & showing his wonderful sense of humour.

Sadly the "lows" are really extreme now, we've had nights where he has been really agitated & shouting out all night & not slept at all. Other days he just goes into a coma-like sleep for hours on end, rambling and clutching the air for things which aren't there, not wanting to eat or drink. Mobility is declining and some days he cannot stand, or put one foot in front of the other. The extremes are just so extreme now, you wouldn't believe it was the same man from one day to another.

The strain is really starting to show on Mum and I'm so worried about both of them.

Dad has gone into respite care for 2 to 3 weeks so we can recharge our batteries & catch up on some sleep. I still hope that we can continue to care for him at home for longer with planned respite breaks, but after a "bad visit" to the NH today, I'm feeling really down......He couldn't stand & hardly opened his eyes for the whole time I was there. My usual "positive mental attitude" seems to have taken the day off today & I just wanted to talk to those who I know understand...

Take care

Love

Gill x

 

[Grannie G]

So sorry Gill. Thanks for the update, but it`s very sad news.

It will be interesting to see how your father goes on in respite care and what records are kept of his disturbances.

Have you asked for advice about a possible change in medication? Your father certainly sounds as if he could do with some help, and so do you and your mother.

It`s good to hear from you again.

Love xx

 

[SteveS]

hi,
from my limited experiences, the medics prescribed a sedative for my Dad, this got him through the night and although he was in hospital enabled the others to sleep in his "wakenings and clutchings".

you talk of clutching in the air, and coma type sleep - I too have gone through this, and yes, sadly is a very disturbing part of this cruel illness - I don't think anyone can witness what goes on in the head of the victim through the torment of this disease. having said that, the torment of the loved one's is quite a load to bear as well, and can prevent sleep, disturb work daily life.

i would say that "positive mental attitude" can be reserved for the health care professionals who can be detatched from the family affected. It is "normal" to find it hard to cope, that is human in my esteem. I too have "days off", at the moment there are more than I would like to think reasonable - but strength comes from respite, take it, rejuvenate and start over - your support to your Mum will be valued and fresh, and when you are reunited with Dad, you will find that strength, i'm sure.

sorry about the diatribe, i'm having one of those positive moments this morning.

Very best wishes and take care.
Steve

 

[Skye]

Dear Gill, I'm sorry your dad has deteriorated so much. I too know all about the coma-like sleep, and air-clutching. The agitation seems to get worse, and the 'good' days as rare as hens' teeth.

I know you want to keep your dad at home as long as possible, and it's great that your mum has you to support her. I hope you have a good care package at home.

I had to admit defeat, I could no longer care for John at home, and I still feel terrible about it. But my own health is so much better now that I can sleep at night.

I'm sure you've already considered options, and it's an awful decision to have to make. Perhaps this break will make it easier for you.

Enjoy your respite,

Love,

 

[gill@anchorage5]

Ups & Downs

Evening all

Thanks Sylvia, Steve & Hazel for your kind responses (it means so much.)

Positive Mental Attitude kicked firmly back in place today as following yesterdays distressing visit - we had a lovely time with Dad today.

The NH had advised that any time we wanted to join Dad for a meal, we only had to let them know. So today we joined him for Sunday lunch and he was on really good form.

Can't praise the Nursing Home enough (early days I know - but I'm quite impressed.) He was not too good when I rang this morning (slept well but refused breakfast or anything to drink) but when we got there the Care Assistant met us at the door and said they had seen us arrive, so had already got Dad downstairs & into the lounge waiting for us! Considering Dad is only there for respite the staff seem to really care about him & have developed a good rapport.

Bearing in mind that yesterday Dad didn't open his eyes & missed his mouth when he tried to eat or drink - today (get this!) he sat at the table with us in his wheelchair & actually used a knife & fork properly! He even said "it's good here - have we been here before?" He even walked well with his frame after lunch for the first time in over a week (I was getting worried about muscle wastage etc & honestly wondered whether he would walk again.) Good days & bad days to be expected I know but the change in him today has amazed me & gives me renewed hope. So pleased that Mum was with me today to see him & not with me yesterday when things looked so bleak.

Thanks for being there......

Love

Gill x

 

[Grannie G]

It just shows Gill how different days give different impressions. I`m so pleased you and your mother were able to go home with good feelings, about your father and the home. It helps so much.

Love xx

 

[gill@anchorage5]

Real Respite

I think today is the first day since Dad went into respite that I have really felt any benefit. I'm sure that many on here can relate to this- we know that respite is "sensible" - we know that it will "recharge our batteries in order to be able to care for him better when he comes home" . But the guilt is still paramount with the (very natural) feeling that "nobody can look after Dad like we do" and feeling so reluctant to "let go" and let someone else take the responsibility. Why do we feel such tremendous guilt?

I must confess a couple of weeks ago I would have cheerfully slapped the next person who said to me "but you have to look after yourself". I know they meant well but I have heard it so many times!!!

Anyway, we left Dad happy this afternoon & even managed to do a bit in my garden this afternoon with Mum's help - which was very therapeutic. Dad was still OK when I rang the NH this evening which has made me relax even further. Let's not forget the added bonus of no Sunday lunch to cook today & no washing up either!!!!

Take care & thinking of you all

Love

Gill x

 

[connie]

Thanks Gill for the update.

Take care & thinking of you all

Amen to that.

 

[dave b]

gill, i'm glad that everything going ok for your dad
i know what you mean,when a loved one goes into care we all feel guilty!
but it's as mutch as getting our lives back together as ther's
i know it seems harsh but 6 days i'm back awake now
mom seems fine & happy & settled so life can go on
good luck
dave xx

 

[Taffy]

It just shows Gill how different days give different impressions.

How very true this is, one day you feel in the depths of despair and the following you feel, what the heck was yesterday all about.

No wonder they are up against it, trying to fathom this disease out.

Gill, I hope that everything continues well and you and your mum get to recharge your batteries.

Take Care. Taffy.

 

[gill@anchorage5]

Respite ends on Monday

Good Evening

We decided to opt for the third week of respite for Dad as he seemed "not unhappy" in the NH (and actually getting him there was a huge hurdle for all of us.) Mum definitely needed the additional time to relax. In some ways 3 weeks has passed so quickly, but in other ways it seems so long ago that he was home with us.

After the previously reported "highs & lows" during his respite stay sad to report that the last 5 days our visits have been quite upsetting. Dad hasn't walked since Sunday and has hardly woken during our visits since. When he does open his eyes they roll blankly around, with no recognition and his pupils look really small. He is refusing quite a lot of meals now (or sleeping through them) and when he does eat, needs to be fed all the time. Mum is understandably so worried about what he will be like when he gets home.

Staff advise he still has more "alert" times (it's just that we don't witness them) - but spoke with the nurse today who had to admit that he has declined quite a lot in the last few days.

I know any change of environment is going to be upsetting for him, including his return home on Monday. I felt so sure that "planned respite" was the way forward (rather than getting to crisis point as we did recently) but I'm now starting to wonder if this is unfair on Dad. Has anyone experienced regular planned respite breaks caring for someone in the advanced stages of AD? I just want to look after him at home for as long as I can and do my best for both Mum & Dad.

Anyway I will be moving back with Mum & Dad from Monday, and as previously advised I have no access to the internet at their house. I will visit the site when I get the opportunity to pop back home & will update again on here when I can.

I've caught up on my sleep, batteries are now "fully charged" but obviously I am concerned as to how things will go. Please keep your fingers crossed for us for Monday - the moral support from TP means so much.

Wishing all the very best.

Love

Gill x

 

[Skye]

Dear Gill

I'm sorry to hear your dad is declining so quickly. He sounds a lot like John. John is sleeping more and walking less, though he does also have some alert times.

I hope you'll be able to manage him at home, it's great that you're able to help your mum in this way.

Good luck, and keep us posted when you get the chance.

Love,

 

[TinaT]

Dear Gill,

How hard it is to cope with the good days and bad days or even good hours and bad hours!. What a roller coaster of emotions for you. On a positive note, how lucky your poor mum is to have such a wonderful support and help as yourself! You deserve wings my girl xx TinaT

 

[Grannie G]

Dear Gill,

I hope you will have the strength to manage caring for your father at home. You will certainly be receiving positive vibes from all of us. I take my hat off to you, you are wonderful.

Love xx

 

[elaineo2]

God bless you,i wish you all the love and luck in the world.What you are doing is what i intend to do when the time comes for my dad.My hat is well and truly taken offf to you!And to all carers out there,be it home or away,god bless you all.love elainex

 

[gill@anchorage5]

Thanks all

Good Morning

Thanks for your very kind & supportive responses.

Dad was not good again yesterday when I visited & Mum is (understandably) growing increasingly concerned as how we will cope if he remains so "out of it" once he's home.

We will cope as best we can, can't do anymore than that. Fully appreciate that it's not going to be easy - just hope that we can take full advantage of any "windows" by getting more fluids & nourishment into him when he's responsive.

Packing up today to move back - I so wish I could access TP from Mum & Dad's house....

So...I will be out of touch for a while, but will not forget my virtual friends out there & all we are going through with our loved ones.

My thanks once again for the moral support.

Love

Gill x

 

[Grannie G]

Good luck Gill. I hope it goes well for all of you.

Love xx

 

[gill@anchorage5]

Back home again during respite break

Good Evening All

Have been staying at Mum & Dad's for the last 12 weeks and Dad has been very up & down during that time. He has now gone into respite care for 2 weeks, so I have moved back home for a few days, though visiting him every day and spending "quality time" with Mum too - so she doesn't feel neglected. Hopefully we are off to Salisbury Market tomorrow!

Have really missed logging into TP during the last 3 months - think I will have to give serious thought to getting a laptop.

Dad's sleeping patterns have been all over the place in the last couple of months - generally he's only sleeping through the night about once a week. I didn't realise how tired I was until I got back home.

Will make an effort to catch up on threads in the next few days and will update further when I've caught up on the sleep!

Take care

Gill x

 

[connie]

Dear Gill, good to hear from you again.

Sorry that things are still not settled with your dad. Lack of sleep takes such a toll.

Do hope that mum and yourself can recharge the batteries whilst dad is in respite. Enjoy the market in Salisbury tomorrow.

Try to rest a little. Know that is hard seeing as you are still visiting dad, and supporting mum. Just try not to spread yourself too thin.

Take care now, love n'hugs

 

[Margarita]

Has anyone experienced regular planned respite breaks caring for someone in the advanced stages of AD? I just want to look after him at home for as long as I can and do my best for both Mum & Dad.

My mother in the advanced stages of AD, I always notice a decline in her AZ when she gets back from respite since she been taking them for the last 2 years . her walking also getting worse ,Social services have told me that they can get an ambulance to collect , drop mum back from respite, when her walking get real bad .

I do find that the respite are getting closer to each other as I am finding it more tiring,
I cant take anymore respite till April , but I know that I have 4 weeks of emergency respite if I need it , On top of my 8 week a year . just knowing that I have that safely net to fall on, if I need it , help me see it though to April

All that help me caring for mum at home I take it it .