Hi Everyone
Feeling stressed and tearful today. Just getting paperwork ready to take to hospital LPA mainly. Just want DC home so badly. He has been in hospital for 5 weeks now. It gets so tiring visiting all the time. I miss him so so much.
Hope you all have a reasonable day.
Hugs to all
Tillyhugs x
Hugs back to you, Tillyhugs. I do sympathize. I just had a week of respite that turned into a trip to say goodbye to a dear brother-in-law, and I so missed my sweetheart; I really needed the comfort of his affection. I was very glad to catch up on the hugs and to bring him home. And that was just a week. I hope for the best for you and your husband. Love and peace, Ec
Was this your first respite, ec?
Not the first, actually the second this year. The VA hospice unit is lovely, and the staff is great, very caring. I asked them take care of my guy twice last year when I went home to care for my mother, so those breaks were not exactly respite. They told me then that I could ask for 30 days of respite per year, so I did ask for one early this year, which worked out pretty well, although I used it just so I could work overtime, and then they offered this recent week, as they had a place, and that was lucky for me, because I could go to my sister.
It's funny (not really) how respite seems to go immediately to things other than the quiet care of the caregiver!
Life doesn't stop just cause we want a break, does it? How are you doing, dear?
I am doing pretty well. It's strange . I feel like I should be crying, and lonely beyond belief...It's only been a week but its also been 4 years! and but like you just said, life does not stop; and I just seem to be going . Maybe it will hit me maybe maybe I am in surreal mode and when reality mode pops up I;'ll be a blithering idiot....
So how am I doing fine, so far....
(HUGS)
AVB
Heady said much the same thing.
Huh...I think a loss of this nature is gradual. Not a sudden onslaught of pain.....can't say either one is any better. On many different levels I loved being just with my husband....I was not focused on ANYTHING else....and I could have never been with him on this level had I been able to go to work etc....But I am worn away....tired.....we'll see...hows your man doing, ec?
AVB
We are doing okay. Slow slide mostly. He is losing weight, and has occasional episodes of agitation, but is still stoic and loving.
It is a slow slide....take a look at the autonomic response system. exaclty what are men are going through can be mapped if you will from top of autonomic nervous system to for my husband, his lungs. Very interesting stuff....
Differs so much from person to person. Your guy lost his ability to eat so early, mine still eats everything as normal, although I try to speed things along by giving him things that don't take much chewing, because he is slow.
And hugs back to you, girlfriend.
Waiving and remembering AVB
Glad your doing fine so far. It can't be easy.
We're all still here for you.
Hugs
Liz and Kevin
xx
Hugsxxx
When (and what) is that care package. What does he have that needs him to be hospitalized that long....I mean besides PSP? Does he still walk...quite frankly after 8 years, I would think he rather bed bound so he should only need a hospital bed....? I am sorry for you it is so draining having to go to the hospital....I slept there most of the time ....good thing I;m small , I had to sleep in two chairs pushed together....anyway tell those Drs to chop chop!
(HUGS)
AVB
He was able to walk but can't now he will need 2 careers 4 times a day and possible s might call! Not keen on the last bit. The bed will arrive tomorrow then we will need a special chair, hoist and different wheelchair.
It seems to taking forever.
Tillyhugs x
Hi Tilly pester the life out of them phone them daily. I would. And as you put the phone down say ok I'll ring again tomorrow. They will soon get sick. Hopefully back home soon. take care xx
So sorry. We are in just the same position. J has been in hospital for 5 weeks with aspiration pneumonia and now has a PEG fitted. We are waiting for him to come home but have to get the care package in place first - 2 carers 4 times a day. We have a bed, hoist and the wrong kind of wheelchair apparently. We cannot have a tip and tilt chair as there are none available. Tired from trekking backwards and forwards to the hospital and worried how we will afford the care but otherwise looking forward to having him home. I hope it works out for you too and you get everything you need soon! x
Hi, Tilly! Hang in there, dear one. Some days will be sad and bring tears, while others will allow a rainbow of happiness to peek through. Let's pray that tomorrow is your rainbow day! Sending prayers for you and your DC..
Ann
Thank you Ann for your kind thoughts and words xxx
Hope you get all sorted and get him home soon. Yes, it's exhausting going up and down to see him, but necessary! Take a break during the day and go for a walk or arrange to see a friend for coffee. I found that helped me. In the 2 cases I have had to make continuous hospital visits, I was some distance away but close enough to walk there and back. It helped me de-stress and I also lost weight. The 2nd time, I always drove even tho it was closer. There was a park not far away so walked there, and friends or relies arranged to drag me away from my love's bedside for coffee or lunch.
It is important to think about your own wellbeing too! So put something together for just you! Take time out during the day! Don't sit by his bed unless he is able to communicate well.
I used to make sure I was there to help with food intake - but staff could do that just as well - if they had time! !!
I know it is so hard to relax! But do try and find something! It will be a long haul! With or without the carers you have.
Big hugs, Tillyhugs!
Jen xxxx
I hope all goes well and he is home soon xxxxx
I know it is very hard. I spent 4 last months in the hospital with my Dad. Please cherish this time. Even though it is hard, they love us to be there. Out presence is more than anything for them.
Aw Honey, I'm so sorry. Just having quiet time with him alone is all you want. I hope you will get it soon. I'll be praying.
Cuttercat
Hi so sorry having such a stressful time, many hugs to you❤ Nettie
Hi Tillyhugs
Its not easy...
LPA papers?
I do hope its not too serious.
Hugs to you.
Kevin
xx
It is just for the care package etc. As DC can't make a rational decision now. Hope you are okay and Liz is as well as can be expected
Tillyhugs
Hi Tiilyh
Yes, that was the post which I wrote and then more of the thread appeared.
Liz is doing OK. at the moment. We are moving onto to her being fed as she can't manage a spoon very well at all.
We do OK
Thanks and I hope you get him back soon.
Kevin
x
Still waiting for them to arrange the carers two 4 times a day
Starting neuro-rehabilitation
