The pressure is on

[califsand]

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.

Thanks!

[nspoc]

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

[Icanmanz]

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!

Irma

[nspoc]

:oops:

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

[Peg B]

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

[califsand]

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:

[Peg B]

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

[CindyM]

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

[califsand]

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.... :(

[CindyM]

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

[califsand]

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 :(

[CindyM]

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

[califsand]

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 House...in 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.

~STRESS~

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! :(

[CindyM]

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

[califsand]

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.

[CindyM]

You will come up with the right decision for all of you, when you need to. All anyone can do with these curve balls that life throws us is do the best we can! Best wishes. We're here anytimne you need us. Cindy

[jimercat]

califsand,

Earlier this year my mother went to an assisted living facility, as she was constantly falling and injuring herself and making a general mess out of her house. Most of the time the responsibility fell on my shoulders to go take her to the hospital or visit the emergency room and then clean her house, etc... It eventually became a weekly thing. She finally ended up in the hospital and a rehabilitation hospital, then assisted living. I am now having to take over paying her bills, but I'd rather do that than what I was going through. The resentment does build and you feel guilty for it. Now I can visit my mom and see her as mom and not a burden. (she doesn't have ALS, my husband does)

Being a caregiver is not easy when you are a family member and have others to take care of as well. Your son and stepkids need you and I think your dad really understands that deep down inside. I wish y'all luck with your decision. Let us know how things go.

[CindyM]

Let's not over look the social interaction that Dad will get. A lot of PALS feel isolated when confined to home, and the responsibility to meet both social and caretaking needs can spread a family thin. You get a lot more interaction with people in any kind of group situation. There's a steady stream of staff, most visitors pass the time of day with any residents they come into contact with (even if it is not their relative) and sometimes real friendships develop between some of the residents. At least this is our experience. Cindy

[califsand]

Yesterday my brother, his wife, my son & I went and had a tour of the Hospice house that is nearby. It's really peaceful, 6 single bedrooms, and plenty of staff. The overnight nurse was still on duty and she talked with us for an hour about how things work there, the volunteers, flexibility for family visits and in general, what we could expect. We agree that he would be well taken care of and once he adjusted, he'd also be content. It's only 3 miles from my house and I could take my little dogs to visit him, his grandkids can all visit and they would let him have his computer, recliner and many other personal belongings. He is going to be back under Hospice care within the next couple of days and I'll ask that the Dr. come visit him so he can get on the waiting list.

Just in the past few days I have seen a huge decline in his movement. It's scary for me, but also for him too I think. He hasn't discussed it with me and that's odd because he used to be so open when talking about his death. I'm scared to bring up the topic of his immobility and imminent passing, I don't want to upset him. I did let him know that Hospice is going to be coming around again and he did not show a reaction. That is good, I expected him to be upset.

Now that I have accepted that he would be best cared for at Hospice, I'm eager for us to make that transition. I know it will be best for him as well as the rest of us and I am also scared that a bed won't be available before he loses his ability to walk and move his arms. I think it's only a matter of a couple of weeks at this point :(

Thanks for all of your support, this situation is obviously hard but I know that by keeping his needs at the forefront of my mind, the decisions will be the right ones. I will keep you posted and continue coming in here for support. :)

[CindyM]

I hope things work out for all of you. Sounds like you are at peace with your decision, which is the most important part of this move. Keep us informed! Cindy

[califsand]

The Hospice case manager came today and we signed my dad up. She said that he is on the waiting list already and she has listed him as priority so as soon as a bed comes up he will likely get first offer for it. She had a talk with him about his progression, had lots of questions about what he wants and talked to him about moving to a facility for care. He went to his computer and typed "I don't wanna go, stay here". The idea of being somewhere else is obviously very scary for him and I understand, it's scary for me too. I'm not sure the best way to help him accept the idea but know that I need to be up front with him about it and help him accept it.

After his case manager left he was extremely high maintenance for the next 3 hours and got really shaky and weak. He had wanted to show her how independent he was and in doing so he wore himself out. I got to a point where I pointed out how badly his body was shaking and told him he needed to sit down and relax for a bit. He wouldn't listen to me so I disengaged and left the room. Usually that works, he knows I mean business when I leave the room...but not today. Within 5 minutes of leaving him in his room I heard him fall, ugh! Fortunately he had no injuries but I had to call the firemen to come over and pick him up, which I hate to do. Anyways, afterwards he actually seemed embarrassed because he didn't listen to me and he fell, just as I predicted. Hopefully he will see that as a learning experience and listen to my advice about that next time. The situation really reinforced to me that he would be best served being at hospice house...they don't lose their patience and they have better things in place to keep him safe. The falls really upset me, even though he has been falling for a few years now, I can't get used to it.

[beaner1]

Hi Califsand,
You sure are having a tough time! You're doing the right thing - it's what's best for your dad. I'm in the same position with my husband and it is so hard! We don't have hospice here, but we do have home care workers that come into the home to help out. I need them in to help, and my husband is so against it! He crys every time I bring it up, and I feel like such a mean person and such a bully, but I just can't cope anymore! He's declining so rapidly, and I don't feel that we're taking proper care of him - I feel that he's suffering needlessly because of my kids and I's inexperience and lack of knowledge of what he needs.

It has to happen, and we just going to have to tough it out. Good luck to you!
Beaner

[CindyM]

Hi Beaner and califsand- there in one more thing to think about when getting outside help: they know how to use the equipment but they also can present the need for it in a more professional manner. Sort of like the difference between us telling a family member to lose weight and having a doc say the same thing. The message becomes too hard to argue when the messenger is wearing a uniform! Cindy

[califsand]

I'm trying to get up the courage to tell my father that he is already on the waiting list for the hospice house. We need to help him accept the idea of it, although I don't know if we can. Also I'm trying to talk him into getting a catheter, internal...because most of his falls occur in the middle of the night when he is up to use the pot. Lately he has been urinating every hour to hour and a half and the hospice nurse said that is probably because the bladder is a muscle and since his muscles are all weakening, he probably isn't emptying it when he goes, so it feels full again very quickly. The more I casually mention the catheter, the more he will think about it. It took a long time to get him to allow the g-tube, hopefully it will take less time for the catheter!!

[CindyM]

Good luck, Califsand. I am sure he will come to see things your way once he gets used to the idea. :) Cindy

[califsand]

I haven't been able to tell him... just in the past few days he has degraded, tonight he is having a hard time breathing. I had planned to tell him tonight that he is on the waiting list for a bed and may be moving soon but I can't seem to do it :(

[Al]

I really feel bad for you but don't know what to tell you. Maybe tomorrow will be better for him and you will feel better able to talk to him. Try to get a good night's rest. Take care. AL.

[CindyM]

Maybe you should have lots of support when you tell him. Maybe everybody should do it together. If you go that route, I'd rehearse everybody a little so they would know how to present it along the lines of, "We love you and want to know you are safe..." Or "We love you both and know this disease takes more than one caregiver..."

Course, what do I know? I've never met your Dad or your siblings...Cindy

[califsand]

Yesterday my Dad had a "tantrum" when I told him that his case manager from Hospice will be here this week. He emailed me that he will go in his room & lock the door. Fortunately, he cannot lock the door and he does like her. It's strange because he was always so open about his disease before and now that it is progressing quickly, it's like he is in denial of it. We are practically carrying him around because he won't use his wheelchair at home! Yet he thinks he's okay?

My brother came to shower him this morning and mentioned that we are looking for a place for him where showering will be safer. My cousin came to take him out and told me that he will talk with him about it today as well, and assure him that "when you move I will still come pick you up and take you places". He knows that we are working towards this and after both of them have talked to him about this, I really should be able to tell him that "Dad, you are at the top of the waiting list for a room at Serenity House" ... seems like it should be a simple thing to tell him doesn't it? Nope... he will respond with things like "I don't wanna go" and "I'll be good", etc...like a kid being sent to military school. Sigh, and I will feel guilty like I am punishing him for declining. I shouldn't feel guilty but I KNOW that his fear will do that to me.

[Peg B]

Hi,

The "i'll be good" breaks my heart and he is not my Dad. Love is so tough and requires so much of us sometimes. I wish you could and I could and all of us could change these situations for our loved ones. But ... Please know in your heart what you know in your mind that you are doing the very best for him and the others you love, as well as yourself. He needs you to be very tough as it sounds like he will pull out all the stops in his desperation to keep things as they are. Know he loves you too and it his pain talking. It is a fact those we know that love us the best, are the ones we can let loose on as they will still be there. You are the safest for him.

You are there for him and we all love you for that. May you be filled with God's peace and love as you go through this. You are in thousands of prayers. God Bless you, Peg

[jimercat]

califsand,

I will be thinking of you and your dad this week as you take on this painful decision.

Thank you for posting what you are going through. It really helps me understand the different aspects of what one could face with this disease.

I hope things will go smoothly for you, I will keep you in my thoughts.

Please let us know how everything goes. It sounds like you have a great cousin and brother to help you out.

[califsand]

Stress is prevalent around here right now! My Dad has to urinate every hour to hour & a half and refuses to consider a catheter. That means that I am constantly hands on, my world revolves around "when is he going to need me next" and I can't breathe. If I am outside for a moment or in the shower, or god forbid-sleeping, he gets extremely mad at me because he ends up walking around with his pants around his ankles. Hospice likely won't have a bed for him until he really truly cannot walk anymore (there are people that have a higher need at this time) and so I am trying to offer solutions to make things easier to care for him here. An internal catheter would help tremendously!

Also, my father should be totally in a wheelchair, he uses a walker and STILL needs physical support, he can't grasp the arms on his own anymore, has no center of gravity and even with the walker, he tips over backwards & falls. Despite the increased difficulty in moving and the physical toll it takes on me, he still refuses to use a wheelchair!!! Today I resent him because my entire back is on fire, the muscles feel ripped and I am exhausted. I complained and does he care? No way, he's mad at me for complaining! It kills me to see how many of you have these great people in your lives, they have ALS too but they don't seem to go out of their way to make YOUR life a living hell like my father seems to do so much of the time to me.

Maybe his attitude is like this because I'm his daughter and he feels like putting up with this is my duty. Telling him that he makes me feel this way just worsens his behavior, increases his tantrums, increases his falling and heightens his dependency. I want him to go to Hospice so badly. There is no worse feeling than knowing how much I have sacrificed, and continue to sacrifice, for a man who doesn't appreciate it and can be downright abusive at times! If someone else were responsible for his care and we could go back to being father & daughter, instead of mother & son, I think that it would be great. I'm scared to end up hating him as well as my siblings for not being more involved. They have absolutely no clue what I put up with on a daily basis and if I complain about anything they all respond in negative ways.

I'm sorry guys, just having one of those days where I want to run away and let the rest of them sort out all of this mess. Today I am tired of this whole situation and just wish that I could have an opportunity to live my own life without always being worried about other people!

[CindyM]

You deserve so opportunity to live for yourself! It can't be all garegiving, all the time. If you get burnt out, what will Dad do? Maybe you should schedule a day off and tell the others that they will have to find a way to let Dad help them. Cordially, Cindy

[califsand]

I agree Cindy. I vented to a couple of siblings yesterday and what do they do? Tell me that they have to call me back and then didn't call back. Figures! I need a weekend off and of course, I crave it off with ME here at MY house alone, something that will NEVER happen. I can't afford to go away right now and have so alienated all of my friends this past year because I am never available, so I don't even have a friend that I feel comfortable calling and going to visit. How sad is that?! I feel damned if I do and damned if I don't. Getting a hotel room somewhere for a couple of days, alone, sounds depressing because that is SO expensive and without a real job right now, I really can't afford to do it. Maybe I'll get to a point where I can justify the expense in my mind, I just don't know.

[CindyM]

Well as far as I am concerned I think you are worth the expense! Maybe if your sibs don't want to take Dad in for a day or two then they would agree to chip in to pay for somebody to stay with Dad? The expense of that might make them suddenly find some free time! :-D

[jimercat]

I like Cindy's idea. Also, what about them offering to pay for a hotel room and dinner out? I know it would be hard to ask for , but maybe you could give them a big HINT!

[califsand]

My brother told Dad last night that we had toured the Hospice House and that he is on the waiting list. Dad freaked out but at least now he knows. My brother said he wanted to take some of the pressure off of me and said that he has warned Dad that they will be discussing it again after his next shower. I am glad he told him, I just couldn't handle the stress of being the only bad guy. He told Dad that it was a decision we all agreed on and that it is purely in his best interests.

My brother doing that made me feel better, a lot better! I would still love a break but it's not that easy guys. My father is an extremely difficult personality, he can barely communicate and hiring someone to stay with him would not work. There are only two people, besides myself, that would be somewhat okay with him but it would be a hellish night for them as well as for my Dad. Unfortunately, these two guys are my brother and my cousin, the only ones involved in Dad's care...and they both work full-time jobs, etc. My sister is talking about moving back here but she has talked about it forever. If she does move back here, she would be helpful...but I can't rely on that at all. I'll hang in there a little longer, the case manager said that Hospice may be able to take him in a couple of weeks. If it doesn't happen in the near future I will have to arrange a break and these guys will HAVE to step up and take care of my Dad so I can go without being worried the whole time. If he doesn't have the right care, there is no point in my taking any time away, I will just worry and feel guilty the whole time, and resent my situation here all the more.