Hospice admission

[CAHPAH]

Dani
Just wanted to let you know you are in my thoughts and prayers. I hope L is back a home in a very short time.

 

[hangingon1]

After two serious hospitalizations, one for pulmonary embolism and the other for an almost septic UTI, hospice was a lifesaver for us. My wife got excellent care and they were able to get all her meds straightened out. After a three weeks stay, she was able to come home and now we have hospice at home. in the two months she has been home, the care has been excellent. We have a cna that comes daily to change her and make sure she is ok. We have a nurse that comes weekly to check her and check all her vitals, then she reports back to the physician at the hospice base. Her meds are delivered to the house. Being her sole caregiver, it has relieved me and given me some peace of mind.

 

[rachelg]

Dani, you must be exhausted - one of the reasons Mark doesn't go into the hospice for respite is because it would actually be more tiring for me with visits and worry.

About the night meds - Mark just doesnt sleep for more than 2/3 hours in a row and thats with a right old cocktail of sedation of Diazepam, temazepam, Amitrityline and Midazolam - I know for sure Midazolam is not for those with respiritory issues but as Mark is on vent we are assured that its safe. The Midazolam risk far out weighs the anxiety of not being able to sleep for Mark, as lying motionless and lonely with me fast asleep makes him panicky. If Laurence is usually a good sleeper, maybe it was just the different surroundings, anxiety and emotions of the last few days that made him accept them.

Stay strong and try to relax and sleep well while Laurence is in there (difficult, I know and a bit lonely).

Thinking of you all x

 

[John1]

Hi Dani,

I have no words of wisdom to pass to you but want you to know I am thinking about you and Laurence and little Stan these days. I hope Laurence will get home soon and you will have a new regimen in place that will be better for all.

Best wishes,

John

 

[Danijela]

Hi All,

it has been a week. I have been visiting several times each day, some good and some bad days for Laurence. It is difficult to keep to a routine in that place, because it is 'open' 24 hrs, so easy to not sleep at night and snooze during the day. Things are dragging on the care package front. Started on PEG feeds, without much trouble so far. Problems with congestion and dry/blccked nose, spending too much time on the ventilator (resting, snoozing)...Thanks everyone for keeping us in your thoughts. Dani

 

[Toto's Dorothy]

Dani, prayers for the three of you at this time. Please make sure you get some rest also.

 

[brooksea]

Thinking about y'all this evening and hoping things are getting sorted out.

 

[Danijela]

Brought L home for 2 hrs yesterday to interview some potential carers. He was exhausted and wanted to go back to hospice asap. Then when there told me I was stressing him out, and asked about 20 times to take bipap mask off then put it on. I think bipap is not working well for him, he insists on nasal pillows while having blocked nose, despite having alternative masks. He feels sleepy and tired. Last night, for the first time, I felt that he may not see the next day. He then emailed me about 9pm to apologize for being rude, saying he perked up and generally being 'normal'. We had a snowfall here which makes driving hard and wheelchair trips impossible. D

 

[rachelg]

This is such a tough time for you Dani. I have no advice about masks but can imagine a nasal pillow with a blocked nose is very tricky. This sounds so simple and you have probably thought of this, but can Laurence sniff one of those Vicks Sinex sticks to try clear it or have eucalyptus on his pillow or even vicks vapour rub just under his nose.

Is he still taking the sleeping meds - they can have such a knock on effect the next day when you first start on them - and because of this you doze through the day and then perk up at night resulting in the need for more sleeping meds - the cycle can be tricky to break.

It must have been very scary feeling that Laurence may not make another day - I am so sorry you had this feeling - makes your heart hurt.

Please know that Mark and me are thinking of you both. Stay strong.

 

[brooksea]

Dani, if I could swim cross the ocean to help, I would! I understand what you are going through! You are doing the best you can, please know that!

Love to you and your Laurence and Stan...

 

[Danijela]

Thanks both. Yes, tried Olbas oil stick, nurse used nebuliser to loosen stuff in his nose, cleared it, tried other decongenstants etc. I am not even sure if the blocked nose is real or not. He is not taking sleeping pills at night and I know he is not sleeping well. We had a good routine at home (going to bed and getting up at the same time, toilet at the same time, meals etc.) and changing the routine has not helped.
Also, he is used to me doing things for him quickly - e.g. lift/transfer - takes me 3 minutes. Hoisting takes half hour at least with three people, washing and dressing takes the whole morning...

He asked me to bring Stan at 11am this morning but then changed his mind because he was too tired. I am picking him up again for 2 hrs to do 2 more interviews.

D

 

[Toto's Dorothy]

Dani, Good luck on finishing those interviews and finding the right carer. Maybe today will be your lucky day and L can come home for good. I doubt you are; but, please take care of yourself. So many times people get themselves run down taking care of their loved ones and once you get back in a routine will notice for your need to see a dr. Kiss little Stan and take a breather. My thoughts and prayers are with you.

 

[rcharlton]

Hi Dani,

Sorry to hear about all this...I imagine that all of these adjustments are overwhelming for everyone.

Here's hoping things fall into a groove soon.

Take care.

 

[Danijela]

Dear All,

finally a moment to update on our situation. Today marks 2 weeks of Laurence's hospice stay. We had some rough times, last weekend in particular when I thought I was not going to see him again. Things have now leveled out somewhat, he is eating well by mouth, supplementing oral feeds with one PEG feed (about 500 calories) per day. Digestion and toileting are bit of an issue, but nothing major. His skin is in a terrible state though, and one of the hospice doctors will try him on different creams (he seems to have several skin conditions going on at once). His ventilator use went from 22 hrs per day to being able and wanting to come off for 5/6 hours each day - something particularly important. I have been using cough assist daily, and this is becoming an indispensable piece of equipment.

He has grown to know all the nurses and volunteers in the hospice, and everyone has been extremely supportive. There is a glimpse of a new care package on horizon, so as soon as this is in place he can come out. I visit daily and take Stan when the circumstances allow me to do so. He cheers everyone up.

Thank you all for your support, kind words and messages. Dani

 

[rachelg]

So glad things levelling out - thats really good news. Mark has been asking me daily how things are going for Laurence.

Hope the care plans fall into place soon.