Hospice/What to expect

[amandaw120]

So we brought in hospice and so far I have been completely unimpressed. I thought it was going to help us get through this and so far, not so much. My mom (62), is fighting to stay alive. Her breathing had been at 23% a couple weeks ago. It has declined since. She is now on the breathing machine 24 hours a day. She can't keep the mask off for very long. Her breathing has been declining at an average of 5% a week. Some days she gets headaches and feels lightheaded, but she will only admit it occasionally. We have hired aides to help, but she is incredibly mean to some of them. I feel awful for them. We are trying to make her as comfortable as possible. Range of motion exercises, massage, etc.

Hospice gave her oxycodone for pain, but I don't really know that it has done anything for her. She refused to take it until the other day. Then we started giving it every few hours, but haven't noticed a difference. She's on other meds for neuropathy pain, but her dropped feet and arms are still causing her severe pain. For a few nights in a row, she has experienced sudden coldness. She suddenly needs a blanket to keep her warm, she is shivering. It passes. This has only happened at night.

Has anyone else experienced this with their PALS? I know she doesn't have much longer, but we just don't know what to expect as she nears the end. This is so incredibly hard. I just want her to find some peace.

Thank you so much for all the help and support that everyone gives. It's so hard to find people that have experience with ALS. This seems to be a really wonderful forum for such a horrible/ugly disease.

 

[MaxEidswick]

Search for posts by Atsugi and affected and you will find road maps and compassion,

Kind regards,

Max

 

[barneyswife]

Amanda, my Barney gets great comfort and warmth from his wheat bag. I just zap it in the microwave for two minutes, wrap it in a tea towel and apply where ever is necessary.
My heart aches for you, you are doing everything you can and that is the hard part of the equation, "What to do, how do I fix this?"
Hugs
Linda

 

[Snowman78]

My father is on Hospice and they have been great. He is as not as far along as your mom though. The nurse comes on Mondays, Wednesdays, and Fridays and checks him out and and monitors his condition and says to please call with any questions in between. We also have a CNA that comes Monday-Friday and bathes dad and dresses him for the day. Our nurse said that three days a week is her frequency for now but as his condition progresses we will see her a lot more. She has been great! I hope this info helps as far as what to expect. Prayers for you, your mom, and your family as ya'll fight this difficult battle with ALS.

 

[Bucky in CB]

I am so sorry that you are experiencing this. I had hospice experience care for both my father(diabetes) and my mother-in-law (Alzheimer's), but have not brought them in yet for my husband (ALS). What I have learned is that they only disburse medications or perform procedures (like catheters) that are ordered by the doctor--otherwise, they only offer palliative care, and track and chart vital stats. The doctor reviews the reports and prescribes accordingly. Sometimes there is a team of hospice workers that includes a chaplain and someone to help with housekeeping or bathing. Any medication or service provided by hospice is first authorized by the doctor through the director of the hospice service. perhaps you should discuss these issues with your mom's doctor and ask for his evaluation of the service you are receiving. He may be unaware of your dissatisfaction.

 

[lgelb]

Also, you have the right to contact the hospice's medical or nursing director for any specific concerns. But the reality is, hospice is palliative care toward what I'll call an improved death [over what it would be w/o them]. Depending on the level of care someone's getting before hospice gets involved and what the patient really needs (e.g. pain control is really important in some cases, less so in others), you may not really see much going on. No one can change the reality of respiratory failure --to some extent it's your mom's call as to how conscious/aware/alert she wants to be through the process. You may want to talk that through w/ her before things progress further.

My husband also gets the "shivers." Sometimes they are because of cold and sometimes he needs scratching (head or back). We try to prevent them by keeping him warm day and night, with multiple blankets and an electric blanket on top when he's in the wheelchair and a heated mattress pad when he's in bed. We also use heatable wheat "comfortbags" for the outside of each arm when he's seated or lying down.

 

[affected]

You need to work closely with hospice. The meds can take time to get the right combination and dosage rates, and then as she progresses that changes all the time. Hospice can't walk in and magically get the mix right, and with your mum fighting against the help it is extra hard.

I know that one, I had some awful experiences with my Chris getting relief!

In the end the mix that worked for him was oxycodone (in liquid as oxynorm given via peg) and clonazepam drops in the mouth. He also didn't like the nerve pain drugs.

About the coldness - yes, they lose their ability to maintain body temperature as their breathing declines. I simply kept adding and subtracting layers or blankets. Even when Chris was very cold, his hands were often hot which kept things tricky as we also had lots of fungal issues happening.

Please do keep talking to hospice and encourage them to work with you to find what works for your mum as an individual.

 

[adozi]

Have you tried resting with pillows under her knees with her feet flat? It really helped me. I don't have any ankle pain from my foot drop any more. You can also try AFOs, but i find pillows more helpful. For her arms, wrist braces might do the trick. I'm sorry you're having so much trouble with hospice. Remember, they work for you. If you're not satisfied, ask the nurse manager or director about it.