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Sep 21, 2007
sant barbara
Hi everyone,

My brother just went home after giving our Dad his shower. My brother comes every other day and takes Dad into the shower and gives him a full/real shower. It's becoming increasingly difficult to do and tonight he told me that it is time to call Hospice, for our father's sake, and see if we can get him on the waiting list for a bed.

This has been a topic of conversation lately and not just him, but our cousin (the only person who can/will take Dad on outings) have both said that his decline is speeding up and that he needs to go to Hospice. They know that I'm exhausted and they know of my mixed emotions about providing care for Dad, and I've worried that they had been mentioning it for MY sake. In fact, my brother has been asking me to contact Hospice for two weeks or more now... and he just stressed to me that it has nothing to do with ME but only to do with our Dad. He feels that Dad needs a more skilled level of care, period.

I am so conflicted because it feels like if I call Hospice I am giving up on my Dad. Exhausted and depressed as I get, I have been caring for him for a while now and do it because I want him to be as happy as possible. I feel he is happy here, for the first time since the onset of his illness, and even though it is really hard on me sometimes, I don't want to put him in Hospice because it will make my life easier. It WILL make my life 1,000 times easier, and that thought makes me feel guilty. I know that my feelings, all of the good, bad & ugly, are natural but I'm still so conflicted.

I'd love to get feedback from those of you who understand what I'm going through... I know that it's time to call but the idea hurts me. I need support from people who know what I am going through.

Hi Califsand -

Oh my! You are really going through a lot. I am sorry about that.

About Hospice - I urge you to consider it. Many of the PALS in our support group are on Hospice, and they are not actively dying right now. We have very good guidance from our support group leaders who help select the Hospices we choose from, and they often provide training to the Hospice workers.

The Pals report that they love Hospice - it offers another level of support, many of them get massages (which help them in many ways). There is often counseling/support for family members and other caregivers. Hospice usually provides the necessary medications. You get help for bathing, dressing and other heavy tasks so you can be present for supporting and caring.

I do not know where you live, but if you have options, ask the ALS people for recommendations. I would not delay because it could deny you loved one a level of help that might be very appreciated.

All of your anxiety is normal - but for the sake of you and your loved one- please resist the urge to do it all yourself to the end. Every member of our group that chose this (even with great trepidation) never regretted it.

Remember, they are there to assist you, not remove you from the process. You and your loved one are still in charge.

You seem to talk as if Hospice means he leaves your home. In our area that is rarely the case. Hospice comes to you. Our Hospices, at most, takes patients into a setting for 5-7 days, to stabilize pain, breathing, train family members, etc. They are not removed from the home unless the family insists. Hospice care is nearly always in-home care. They do not, in any way, take over for you. They are a supplement and a support. You will not be turning your loved one over to their care, you will still be doing the vast majority of it, you will just no longer be alone.

I reiterate - please consider it soon - don't deny your dad a chance to experience that extra level of care - not that your care is lacking. Hospice just brings something extra, for you and for him.

I will be thinking about you - Beth
Hi calif! I just read your post. You have proven to be such a caring and beautiful daughter! You deserve a medal. As far as Hospice goes...........Hospice is very helpful, and I can understand why you are not ready for that. Hospice is for the dying, and sweetie, you are just not ready to give up on your Dad, and may God bless you for that. Als is such a bad disease, and it is sooooo sad when it hits home. I wish I had the words darling, but I don't. I lost my 38 yr old son to Als on June 3, 2007. Hospice stepped in on June 2, 2007, and in less than 24 hours he was gone. I was left in total shock! When the Hospice lady came over, he asked her if she was going to drop by the next day, little did he know....................... Als is a sad, sad, sad illness! May God bless each one of you!



Sorry Califsand - just saw your post from 9/21 -You already know more about Hospice than I could ever tell you. I am confused - your Dad has already been in Hospice according to that post. I don't understand what is different.

Sounds like your accepting help means you are giving up - of course that is normal. You mention being stressed and depressed. I'm not sure if you know it, but one symptom of depression is an exaggerated sense of guilt. Two members of your family say now is the time - I think I would pay attention.

Take care - Beth
Hi Califsand,

Both my mom and sister had "hospice." I put it in quotes as it meant different things for them. My sister had it two or three times in her home over a 12 year time with cancer.

My mother was in independent living situation where my my sisters and I shared responsiblities for her and ate at least one meal a day with her and she paid for extra assistance. She got out of bed one morning 15 minutes before the new- full time person was coming, and her leg broke. I took her to the hospital and then moved her in with me - same day, as it broke because of her spread cancer. She also had lots of dementia because of Parkinsons. She had us, full time day care (she paid for it) and hospice. She died about 3 weeks later at my home. In retrospect I wish we had started hospice earlier. But prior to her leg breaking I had gotten a hospital bed from hospice and it was our apartment as my mom, sisters, my husband, and I had agreeded she would come to my home on weekends and move in when needed.

Hospice can be a place but it is mostly services that can be set up to meet the needs of the person and the family. We were told the unit of care in a hospital is the patient. The unit of care in hospice is the family. Dying is a natural process and it effects the whole family.

Beth gave you good information and details. I hope this helps. My prayers are with you and yours. Sincerely, Peg B
I'm sorry, I didn't provide enough info...

I should have been more detailed, I'm sorry! My dad was under Hospice care, where they sent someone here to help out. They released him from Hospice a couple of months ago because he seemed to be improving, or at least stable. In order to be eligible for Hospice care he has to be determined to have less than 3 months to live. If he is eligible, they can put him on the waiting list for a bed in one of the local Hospice houses. That is what my brother feels it is time for, him to go to a Hospice house to get a higher level of care than can be provided here. Dad needs 24 hour care and I have been providing it, with the help of a caregiver during the week.

Part of the problem is that my father won't let any of the Hospice staff DO anything for him, no massage, no bath help, no PT, NOTHING. The only time he was receptive to receiving the full help that he needs was when he was in the hospital a while back. So, my brother wanting me to call Hospice means that he thinks that it is time to try to get our father admitted to a Hospice house. I don't even know if they would find him eligible or not right now and honestly, having them coming in and out of my house made it extra hard to deal with my father because he was so angry about their involvment, he would have tantrums whenever they came. I don't miss that!

I know it can't hurt to call them and they would want to come evaluate him (of course) in order to determine if he is eligible for their services again. We have previously discussed with his Dr.'s and the Hospice staff that he will eventually be best served under their direct care and my brother is telling it is time to get him on their waiting list... that's why I am kind of freaking out :cry:
That is between a rock and a hard place. I am sorry you have to deal with this. It is so hard. I wish I could help more. My prayers are with you. Peg
Hi califsand, tough decisions all around, I can see! I wonder if your brother thinks it might be a good idea to get Dad on the list in case he or you are absolutely ready when his name comes up for a bed? If you don't at least get him on the list and something happens to you then it could be a long wait for help for Dad.

On the other hand, if his name comes up and you want to keep Dad at home, you can always decline the opportunity.

One last thought - I thought it would be easier for me to have Mom in a nursing home. In many ways it is, since the peace of mind is precious. The total care for an individual 24 hours a day 365 days a year is very draining. Now, I see her daily and my role is to do "happy" things, like brush her hair and tell her how pretty she is and sing to her and read to her. I never had energy for that when my role was to change her diapers and feed her. And she likes my new role better. before, I was one of those nags who tried to give her medicine. Now I am the lady who brings fun, laughter, and happiness.

At least that is how it worked out in our family... Cindy
Thanks Cindy, those are all good points. I know that it would be better for us if he were at Hospice, I would have more energy and I would be a ray of sunshine for him when he saw me, instead of this person who is constantly here and watching & listening to his every move. He got SO mad at me last night because I didn't hear him calling me when he needed help to pull his pants up after toileting. I had JUST tucked him in and spent about half hour on the phone, outside, talking to a good friend about the situation. I didn't expect him to need to use the bathroom so soon and so when I came in and he was mad, I felt bad but also was frustrated at him because he was REALLY mad at me for the next half hour.

I don't always hear him at night when he needs me either, even with the monitor on, because I am SO tired. Having the opportunity to sleep at night would be an amazing thing for me and being able to spend time with him that doesn't require providing serious care, would be great for both of us. I could stop trying to be perfect! Before he lived with me I would go to his house every day and tuck him in. It used to be a fun bonding experience for us. Now, it's a chore and I look forward to that being done each day so I can finally relax. If he goes to Hospice, I would happily go tuck him in each evening and I know it would be very positive for both of us to have that routine without having the rest of the dependency on me that he has.

Last night my friend told me that my fear of letting Dad go is selfish and that it is based upon my own guilt feeling that it means I am "giving up" on my father. He stressed to me that Dad needing a higher level of care is NOT my fault and that if I postpone seeking it for him that I am putting him in harms way.

Although it upset my older brothers and created a large responsibility for me, Dad asked me to be his power of attorney and also the agent of his last wishes, years ago. He did it because he trusted me to make the best choices for him that weighed his feelings and his well being. I'm sure he knew that I would go through this kind of debate at some point and he trusted me to make the best decision for him. It's very scary but I know that in the end, I will do what is right for him. I just may need a few nudges.... :(
Humm- I wonder if there is an element of truth in the idea that you might feel that you are giving up on Dad if you let him go to a hospice. Maybe you want to explore this a little more. Are you feeling on some level that as long as he stays at home he is not so sick? IDK, but I bet there are folks in your community who can help you sort through all this. It is a lot of responsibility and I wish you didn’t have to go through this alone. Cindy
Thanks Cindy,

It IS really hard. I called and left a message today for our old case manager at Hospice. It can't hurt to call and at least find out what I would need to do. My brother was here again tonight for his shower and said that again, he sees a serious decline and when he pointed out the things he meant, I have to agree. My brother said that during the shower he told my father that he won't be able to do it much longer because it is not safe to have to help him get in and out of the shower. They have to step up to get in and Dad can't do it on his own, he can hardly do it with full support at this point... so my brother feels like they are going to fall. Not good!

I promised I would try again tomorrow to reach someone at Hospice and inquire about getting them involved again and seeing if a Dr. could come and examine him. If they can put him on the waiting list for a room at Hospice, I can accept that. Nursing homes are not an option because although we have a lot of them here locally, they will not take him into the ones that I feel are more appropriate, they said he is too young and his disease is outside of their comfort area. The other homes have 3-4 patients crammed into each room, with only 2 feet of space on each side of each bed. Forget that! My father would be very depressed in a place like that and I could never put him there, no matter how hard this is on him and on me.

This situation is hard and I do feel alone. It's good to have support and I take more comfort in the support from you folks here, than in anyone else. My family has many opinions and some of them really want me to have him cared for elsewhere. They are seeing the toll it is taking on my life and I know that is their motivation. Sigh. I'll check back in tomorrow or the next day & let you know how it goes. I'm sure that no matter what we do, I'm gonna be a mess. I feel like a mess all the time now :(
I am so sorry, califsand. I do hope you get a few spare moments of rest, or at the very least something fun, today. You deserve a break no matter how short! Cindy
Well, I spoke to our old Case Manager at Hospice today and she understands my situation all too well. Her father died this year and her father-in-law passed away last month, so she has quite a bit of personal experience with loss. She feels that my father should be back on Hospice and that he would be eligible for a bed at their best Hospice fact, there are 2 beds right now that are open. The set up there is that it's an actual house, each patient has their own room with a little private patio and they can have their personal things. He would be able to take his computer and his recliner that he sleeps in, as well as personal items/knick knacks... it would be a good place for him but I'm still scared. It really freaked me out that she said there were two spots open and that she feels he would have no problem getting into one, particularly since he has ALS and the nursing homes won't take him.

I have a message out to his Dr. to discuss referring him back to Hospice and I am trying to arrange a tour of the Hospice house this weekend so my brother & I can see how we feel about it. My stomach is in knots. I have NOT talked to my father about this yet and I know that I need to but my brother wants to wait until we view the house he would go live in, just in case we hate it.


Why does this have to be so scary? When it comes time for me to help make decisions about him getting better care, I feel like a scared little kid! :(
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Oh califsand. I wish it could be easier! You will find the right answers within yourself, when you need them. One thought: if he decides to go to the group home and hates it, could he come back home? Cindy
Good question Cindy. I think that he will hate going to the hospice house, at first, and then he will adjust to it and like it. I don't know that I could go through moving him there, then moving him back in here and trying to make it work. If I let him come back, what happens then? What happens when he can no longer move his body? He won't be able to communicate, it has been years now since he lost his ability to talk.

The reason that I am leaning towards him going to hospice is because it is getting so hard to make things work. Hard for him and also for me, I am beginning to resent my father and the rest of my family because I feel so abandoned by most of them. I am totally NOT there for my teenaged son at all and barely there for my stepkids. I'm spread too thin and Dad needs more care than I can give, as well as a more patient and tolerant caregiver. The longer I try to do this, the more it drains me in every way. I want to be able to go visit him. I want him and I both be happy to see each other. I miss that so much and the more I come to terms with him moving to hospice, the more I think it would be the best choice for him at this time.

I obviously feel tons of guilt about the idea of someone else taking care of my Dad but I am thinking that it is time to look into it as a good option. No matter what though, I still feel really torn.
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