Hospice volunteer

[Pepper]

Sometimes I wish I am not so timid. It is so hard. I have to force myself to contact the volunteer service and get someone so I could run an errand which will take around 2 hours. Anything that is an hour or less, I make sure my hd is comfortable with all the emergency props before I leave. Most of the time, I go to the post office and back.

My hb had a bad night with mucus last night. I used the suction machine three times and managed to alleviate it a bit.

 

[Katie C]

Pepper, I think maybe if you work up the nerve to call once and set up something on a regular basis (like once a week for two hours on Tuesday afternoon... just as an example) it will make future calls easier, even in an emergency. It will also give you a much needed regular respite time. You need to take care of you so you can take care of your husband!

 

[Pepper]

Katie, I am able to work up nerve to do things, it is getting help I find so hard. One friend asked me to ask her should I need help, she practically made me promise to ask her for help should I need it. I needed it one morning and phoned her. Her response was - she could barely handle her work as carer and asked me how I do it. That did not help. I phoned the hospice and the volunteer department sounds very helpful. I will phone them and get direct information from them. Until now I did not experience such a great need. I was able to leave my hd alone when I need to with some ease of mind but not recently. I could do it short period of time. Anything requiring longer time, my mind could not feel at ease and I know I could not do it.

Thanks, it helps getting it out here so I could overcome this hurdle.

 

[Miss]

Okay, so what do you do if you are not ready for hospice? My husband currently has PT and OT which are very, very helpful for his range of motion. With hospice, we would have to stop these things, so we cannot have them yet. Is there something else available that I don't know about? We have Medicare and private insurance.

 

[kelly]

I know that once Andrew's lung capacity hit a certain number he qualified for hospice. It was the hardest decision we made to get them involved. However, it has been a 100% positive experience. Once you get through all the paperwork..and scheduling..it is a lifesaver. They send an aide 4 days a week for 90 minutes! Gives me enough time to run out and get errands done before the kids get home from school. No more running to the pharmacy..they take care of delivering the meds. I have someone to contact if Andrew goes into "CRISIS" mode. There attitude is actually geared to making the person's quality of life better.....not what I pictured. Also, they listen to Andrew's every concern..takes some of the medical stress off of my plate. They have a social worker that I will be calling soon. Accept help......I know it is hard.

 

[Ladyinn]

Missy, 4 years ago when I had Hospice for my husband he was still having OT and ST once a week in home and had a feeding tube, Medicare covered everything, including paying for all his meds.. With the Compassionate Care,that I am using, if you have these before you go on Hospice Medicare will allow it, but if you want them after you are on Hospice, Medicare won't pay. Screwy, but that is the government!

Hugs,

Diane

 

[Pepper]

I must be missing something big time here. We get a cna 3 times a week, but it is only to give my husband bedbath. I was told by the social worker the volunteer is good for 2 hours once a week. If I am able to get an aide for 90 minutes 4 times a week, I would be in high heaven. As it is, I usually make short necessary trips out, watching my clock anxiously and always rushing rushing to get back. I will phone their office and make inquiries. Until now I did not really need it but now I do, it gets harder and harder to leave my hd alone at home. Like today, he is groaning and moaning and has been the entire night. He does not feel well. He was so well on Monday, not so yesterday and today he feels sick. It is all that mucus stuck in his chest, unable to cough it out.

 

[Katie C]

Missy, why would you have to stop therapy?! For us hospice sent a physical therapist weekly, a cna three times a week. We could have had a volunteer come stay with him so I could run errands but he was in a dementia-specific adult day care three times a week so I had that time off. And Pepper.. CNA would in fact be for bathing, tooth cleaning, etc.

 

[LizT]

Peppper- just a suggestion- maybe call around to different hospices. Different ones may be able to offer different things.

 

[Katie C]

Liz, excellent advice! Had we not had Kaiser, we would definitly have gone with VITAS hospice.. the care they took of my mom was simply amazing, and she had 24/7 care which was a lifesaver for her family!

 

[kelly]

From what I understand...you will find a difference in profit and non for profit hospice centers! We have found for the most part that hospice is willing to work with us...maybe we are just getting lucky in our experience. My hubby is still able to go to his pool therapy two times a week...and one day of stretching. They also provide a massage therapist for Andrew once a week. Pepper....it really sounds like you need the help....if your hubby is awake..that means you are not getting sleep either. Stay Strong!