How to let go of my dad...

LisaM · 10-17-2009, 04:03 AM

My dad starting experiencing symptoms of what was later diagnosed with ALS in the summer of 2005. Since then it has been a long and difficult journey. Since February he has been having significant respiratory distress which has become worse in the last couple weeks. Among other things his anxiety is extremely high prompting us to accept hospice into our home. Unfortunately my experience with hospice has been downright awful but I am following through because I don't have a choice.

Since 6pm, it's not 2am, my father has been in distress - he has has 2 ativan, tylenol with codeine and 2 doses of morphine along with his baclofen and has not calmed down for a moment. He will call with the only sound he has left in his body for an hour before I go over to him, and when I do he wants his finger adjusted a cm signals that he is now okay...I come back to bed and before i'm even in he is calling again. He used to fall asleep after the ativan and at worse these spells would last an hour or two...i don't know how to understand this.

I don't know how to word my question...I guess I need advise on how to let go of him. How do I cope with him when he is in respiratory distress and refuses the bipap...what do I do...what does this phase usually look like...

mare · 10-17-2009, 10:01 AM

Lisa- I'm so sorry you & your Dad are going thru this. I have just read thru all your posts, and it seems like you have been a great daughter in loving & caring for him in these difficult times.

I have no first hand experience with the position you are in; just my opinion from reading different articles on this subject, as well as what others here have shared.

Without seeing him, it seems as though he is in severe respiratory distress & impending failure. Since he is refusing bipap, all you can do is make him comfortable; although I would continue to ask him if he would like to try the bipap, but, respect his choice & don't force it.

You should call hospice ASAP & tell them you need more help to relieve his distress. The anxiety, agitation, & restlessness are all signs of respiratory distress. He will need more sedation to help with this.
Also, if possible, (I don't want to add to YOUR stress right now) if you could have at least 3 people, each taking an 8hr shift (certainly more people would be better), so that he is never left alone- it might help him with anxiety. (I don't know if your hospice will provide this- please ask)

When this stage starts, people are afraid to be alone, even if they don't verbalize it.
What happens is they have more & more demands/requests. Certainly this is understandable- no one wants to be alone when they are dying, or fear that they are dying. Often, just knowing someone is there with them- holding their hand, stroking their head, or just sitting quietly beside them- will decrease their anxiety & their requests. Talk with your hospice team- they should help you with this!

Take this time to say what you want to say to your Dad.
My thoughts & prayers will be with you, your Dad & Mom at this very difficult time.

serenade · 10-17-2009, 02:08 PM

I am so sorry about your dad and that you must go through the experience of letting go of someone you love. I was with my own father and my uncle when they were gravely ill with cancer and dying. They were calmer when we were near, and complained of pain as well. Just the touch of our hand made them more relaxed. They spoke to their mothers! Was it memories of the lives they had or did their mothers come to lead them to heaven. I don't know but because of being witness to there passing I do not fear my own death one day. Please contact hospice they should assess your dad and if he is in the final days of his life they will provide you with a comfort kit for your dad. It will contain all the medication that he needs to make him comfortable. Just be with him and comfort him, he will be able to hear what you say! Someone should be with him at all times.

Your Loved One lives In Your Heart
Many tender memories soften your grief,
May fond recollection bring you relief,
And may you find comfort and peace in the thought
Of the joy that knowing your loved one brought...
For time and space can never divide
Or keep your loved one from your side
When memory paints in colors true
The happy hours that belonged to you.
~ Helen Steiner Rice

laurel · 10-17-2009, 02:20 PM

Lisa I am so sorry that your father is deteriorating and that he is so anxious. Mare's response was exactly what I would say. Call hospice and explain that your father is still very anxious and uncomfortable. And just stay close and be available to him as he is afraid to be alone. I know what is happening is devastating and so hard for you, and I wish I could ease those feelings. My prayers are with you and your dad.
Laurel

tdamess · 10-17-2009, 04:36 PM

great advise mare--lisam my thoughts are with you and your dad

LisaM · 10-18-2009, 03:50 AM

Thanks all for your input. Even though I haven't turned to this site for support as much as I probably should have over the years, I know that there is always someone willing to help me through. If hospice is the only place I can turn for help with what is going on in this house, I need to find a better way to communicate with the staff.

I feel like the only person who has ever had to struggle with this comfort measure. A nurse came in yesterday and tried to explain what ALS was to us (in a haphazard way) - after all these years, i'd say I am already an expert. Then she proceeded to move him in every which way, changing his pillows and positions, without any discussion on what he seems to like or can handle. It's probably what agitated him to begin with. This nurse saw first hand the first two hours of his distress, watched us administer ativan followed by two doses of morphine with no relief however she just left. Every little thing was met with so much resistance and inability to listen that having here there was just making it worse. He couldn't calm down for another 5 hours after that visit. On the same day before the nurse visit, my father was spitting up the chicken in his noodle soup. I couldn't figure out if it was because he couldn't swallow it or something else. I brought it up to the nurse and she said that we should find out what he likes to eat. I explained that he isn't communicating what it is and that the inability to swallow is a serious thing to look at. She turned to my mom, his wife of 35 years and insisted we find out what he likes to eat again. It's too difficult to communicate with this staff. A home health aide last week was working with our paid caregiver - our caregiver asked him how often he would be coming by to bathe my dad and he simply said "until he dies". It was so insensitive I was in shock when I heard this, however there is nothing you can do about it when you are tired and have no time. We've only had hospice for like a week and a half!

But I understand I have no choice but to work with them...I can't request changes in staff and just have to deal with it as is because of one of Kaisers ongoing administrative glitches...if i have to talk to them to help us through these attacks that are getting longer and longer can someone advise on a good way to better communicate? If I don't involve them I suffer at home with this...if I do involve them I have difficult staff people to contend with...

The good thing is that he was pretty good today...sleeping soundly for the last 3 hours!

mare · 10-18-2009, 12:14 PM

First, I'm glad your Dad had a better day yesterday- I hope it continues today.

I'm sorry for the frustration you seem to be having, but I'm not sure I understand completely. You say you can't request changes in staff- why not? I'm not sure what you mean about Kaiser & their "administrative glitches"?

Hospice is suppose to give comfort to the patient & the family- not add more stress!
I agree that the comment "how long... until he dies" was more then insensitive! It was unacceptable!
And your description of the nurse & her haphazard way of moving your dad (if this was her first time there, she should have asked you "how you do this..." or "how your dad likes that...") does seem rather abrupt, like she was in a hurry to leave.

I understand your experience with her coming in & "trying to tell you about ALS"; I think you probably do know more & could tell her more about it.
I had a similar experience with my Dad- won't go into details, but we asked the dr. to have someone to come in for PT & a home health aide to assist with bathing, while he was working through a difficult time. Visiting nurse had to come in for an evaluation- she was there 5 min, asked a few questions (she already had the form from the dr stating the reason for the request) & she proceeded to tell us he needed a diuretic because his legs where so edematous! They were that way from immobility & position- he was sleeping in a chair due to back pain!

But she insisted he must have congested heart failure & needed Lasix. I assured her he did not (was just at the dr the day before), and if anything, he was dehydrated!
She just had a "holier than thou" attitude that rubbed me the wrong way. She did not know my dad, never saw him before but insisted she knew what was wrong.
Unfortunately, some people are like that- think they know it all- and that sounds like your nurse. But, unfortunately they don't know enough. (like her saying to find out what foods he likes!!! That is the most idiotic statement, in light of the situation. And the fact that she doesn't see that says she does not understand ALS!)

You are not the only person who has had these problems. Others here have said they were not satisfied with their hospice agency. They were advised to fire them & get another! Hospice works for you & if they are not providing the service that you need (and are paying for!), there are other agencies.

If this is where you say you have problems with Kaiser(?), then maybe try:
1) call whoever is responsible for getting you hospice & tell them the care is unsatisfactory. You are very disappointed in the quality of care, and you want another agency to be brought in! An agency that has worked with ALS patients & understands that vast & complicated problems associated with this disease!
2) if getting another agency is not possible (but I don't know why you wouldn't be able to; you live in a large city), then I would call the agency you have (after you do lots of deep breathing & remember "you catch more flies with honey than with vinegar"), ask to speak with the director (or the highest person there), explain your situation.
You have not been happy with the care; it is not the care that is outlined in their mission statement to provide comfort & compassion to patient & family; this is so very painful for the whole family, you want the best for your Dad, etc.
Say you want to start over, with people who know & understand the disease, who are willing to work with YOU since you have been taking care of him for 2+ years.

I don't want you to feel you have no choice- you do. I know you are tired, frustrated, feeling helpless to get your Dad more comfortable. It is hard enough for someone to watch their loved one go through this, but to deal with this inadequacy is terrible.
I hope you will soon be able to get this resolved.

p.s.- have you talked with the ALS clinic you attend? is there a nurse coordinator? what about going to the dr. directly? or, as stated in a previous thread, the local ALS association. Someone who you have had contact thru the years that you can relate to & you feel can advocate for you. Good luck

Perhaps others who have dealt with hospice can relate their experience and offer advice!?!

bythesea · 10-18-2009, 02:33 PM

mare

I found your posting very reassuring, resonnating with sound experience. This final period of ALS has got to be the most dreadful.

LisaM · 10-18-2009, 02:46 PM

Hello,

When we first requested hospice, Kaiser (the insurance carrier) set us up with a hospice agency contracted through them. I was happy to hot have to deal with Kaiser for a change. This agency came in and did the nursing, social work, home health, md assessments (total of 10 hours) so they can start everything.

Once they were in a routine Kaiser called and said although my dad's paperwork said he has medicare, in fact all these years, the Kaiser commercial insurance he always had was paying for his care. I don't know what happened to the Medicare paperwork since my dad is now 76 years old and all that was handled 10 years ago. It's always one administrative gliche with Kaiser after another. HUGE things like this. Three months ago the speech therapist called ME to request an appointment for an evaluation for a communication device. It was the first time they told me we would be needing this and that they would like us to come in for it. It felt SO nice. The evaluation went well and they said 8 weeks we would have it. Dreamy, right? At the time my dad could speak enough to say a word or two. 3 months later he can't speak and no device. It took me four weeks to get an answer on what was happening - the fax never went through so they had to start again and don't know how long it will take. In the meantime this man has an incredible amount of need and zero way to let us know what it is. Cards and alphabet dont work when he can't breathe...maybe a communication device wont either but if it was me, I think having that machine would be such a relief.

Because he has Kaiser commercial insurance I had to switch to the hospice department Kaiser runs. This meant another set of assessments with all the team members. It also means that I am limited to them. I can't fire them, all I can do is decline their services...

thanks for listening...if there is one thing I have learned it is to work the system...it's been like swimming upstream all this time but there are people, few and far between, who haven't had to fight for their care...I should have found them before and asked what they were doing. Live and learn...

Thanks for all the help!

mare · 10-18-2009, 03:40 PM

Lisa,
You have really been put thru the ringer, and this shouldn't have happened. The ball was dropped too many times, and you have slipped thru too many cracks!

This does not make sense- the insurance company has paperwork that says he has medicare & they agreed to pay for it??? They always give it to medicare first, unless it was set up that Kaiser was his primary, but that doesn't make sense either!

So, you have had 2 different agencies in to evaluate? But the first never started care?
Kaiser Ins. changed them because they said they were paying & so you had to use their agency? Do I have that right?

It seems to me you should be able to use Medicare for hospice- Medicare does pay for hospice. Don't you have a social worker that was assigned to you/your dad from the clinic he goes to? This should be their job, to help you sort this out!
Also, tell her/him about the communication device fiasco (and get the speech path. in on this) and see if they can "kick some butt" to get that ASAP! Make some noise- someone screwed up & your dad is suffering because of it.

I know this will take a good amount of your time- yes, talking to these people can be infuriating, but it has to be done. You said you learned to "work the system". You can & should get hospice thru Medicare.

ps- I thought Kaiser was the hospital/clinic you go to.
I still say to try the suggestions I listed before.

Katie C · 10-18-2009, 09:30 PM

Lisa... Kaiser is something I have some experience with. We have a cousin who is a Kaiser case manager and she walked me through it when we were trying to get a second opinion after Glen's first idiot neuro gave him the most cold-hearted diagnosis you can imagine. My feeling is... Kaiser has good people.. you just need to get past the moat, the dragon and the serpentine wire surrounding them!! So... you need to contact member services (I find putting everything in writing helps... I've actually had extremely good luck using the on-line e-mail system from the kp.org website. Explain the kind of insensitivity you've described here. NAME NAMES... that's the biggest trick!! Tell them you are considering filing a grievance.. that's important! I've done it twice.. both times I've had the problem resolved to my satisfaction within 12 hours. I'm not promising, but it's definitly worth a try.

Katie C · 10-18-2009, 09:33 PM

Mare... in general, Kaiser wants you to use their services.. getting a referral to an outside agency or physician, while not impossible, is difficult. They have their own hospice program, and that's what they want you to use. The same way we use Kaiser doctors, hospitals, etc. They also provide specific referrals for durable medical equipment. The care is good.. but one has to know which cages to rattle sometimes to get it.

LisaM · 10-18-2009, 09:39 PM

It's pretty complicated, sorry if I am not being clear. The bottom line is that he does not have medicare at all, he only has Kaiser commercial coverage through my mom's employment. This means that I can't use any hospice agency and can only use the Kaiser run hospice.

Now I see that maybe the fact that he has commercial kaiser made getting medical equipment that is the lifeline of ALS patients so difficult. If Kaiser was able to bill Medicare for the equipment instead of having it come out of their pocket it would have been easier. The theory I have heard is that with Medicare if the diagnosis is there, ask and ye shall receive. To me I say that the illness and day to day stress have been a small part of my difficulty with this illness; the fragmented health care delivery system has robbed the life out of me. And this is for someone WITH insurance!

I learned to work the system for the future. I definitely didn't understand that until now. I worked hard on everything, but not smart. Live and learn. Thanks again!

LisaM · 10-18-2009, 09:43 PM

Hi Katie, I never could find the energy or time to go to member services for anything, but that's part of working the system. If I had learned to work that way I suspect things would have been easier. Maybe. If I had picked the brain of case managers I would have "gotten" the way things work after talking to the MD about my needs. I guess I am hard headed - you'd think I would have stepped out of the box a long time ago.

Katie C · 10-18-2009, 09:47 PM

Ah, don't worry about stepping out of the box, you're doing fine. I just lucked out that we're related to a case manager who walked me through it the first time! Here's what I'd suggest: if you haven't already go to kp.org and set up an online account under your dad's medical record number. From there it's easy to just e-mail member services. Like I say, I've e-mailed them with a problem at 8:30 at night, and had it resolved by 8 the next morning. Biggest trick is being willing to name names of people who are not providing appropriate service. Feel free to e-mail me if you want to talk about it more. And hang in there.. you're doing great.