Lodgedodger I need to talk

**gazhekwe** · March-11-10, 09:17 AM

I think it is good for children to be with someone at the end of life. When I was small, my great grandmother was cared for at home by my grandmother. I loved them both and I believe letting me be around them was good for us all. With the right kind of approach from the parents and others, there is nothing scary about the transition process.

LodgeDodger · March-11-10, 10:12 AM

Gaz, she might have meant the child is a disruption and bothers the dying person. However, I believe that having children around the patient [[if the patient would like them present) is very healthy for all involved.

Many times, I've had to watch families [[who have not learned about the process of death and dying) do all sort of crazy things after the person has passed away. Our children shouldn't be shielded from such events.

As a volunteer, we were trained to keep bubbles in our "bag of tricks". Many times, a child was nervous about approaching the patient in the new surroundings [[hospital bed, oxygen machine, bedside commode). If the patient was up to it [[that's why an early call to hospice is recommended, as family becomes comfortable with the changes taking place) they would show the child the bubbles, the child would sit near the patient or even hop onto the bed, and the ice would be broken. Same grandma or grandpa, but slight change in surroundings.

The one time I cried while volunteering was seeing grandpa and grandchild sitting in bed blowing bubbles. The look on their faces was beautiful.

The dying need to be with the people they love.

**gazhekwe** · March-11-10, 10:45 AM

That could be. The parents could very well not be providing good guidance to the child. Still, the family dynamic that appears chaotic to one may seem normal to others. I know some kids and their parents can easily drive me up a wall.

**sumas** · March-11-10, 10:00 PM

I do not object to children being exposed to a peaceful passing. However he hasn't seen his niece since she was two and of course his great grand niece ever. There simply is no bond there. The kid is driving him nuts. Personally I think she is adorable.

I only find Hospice creepy in the sence that I had to tell Mister I had arranged for Hospice. I might as well have said you're dead buddy.

Currently, no one has durable power of attorney. The family thinks I do, but I don't. One thing people do not understand is that durable power of attorney only kicks in is if he is incompetent or in a coma. For example, I can not pay his bills or access accounts without his permission. Since coming home from the hospital he has refused to pay his bills. He is a stubborn old cuss. The phone got shut off yesterday. Today I convinced him to let me pay the phone bill via telephone transfer. Tomorrow, we will pay the cable, His paying tennant has an internet business and it would harm him. Saturday, I'll get him to pay DTE. Wish I could figure out why he doesn't want to pay bills but even his adored great nephew couldn't get him to do it. Mister and I have a deep love and trust for each other,

I can coax him along but have to deal with one issue at a time.

**gazhekwe** · March-11-10, 10:14 PM

Maybe he feels the visitors should help pay? If so, there isn't much you can do about that.

**sumas** · March-11-10, 10:45 PM

I am trying to separate feelings and emotions along with the process of dealing with a loved but dieing person. Hence two threads. One the process of caring for someone terminally ill and on the other hand the financial concerns. Perhaps I sound greedy myself, my defense is we promised Mister to restore the house back to what it once was, an artist community. I take my promises very serious.

**sumas** · March-11-10, 11:17 PM

Gaz, no doubt you are right. The bill is normally about $60 a month and Mister and the tennant always split that, international calls are covered off by the tennant in regard to his internet business. This bill was for $224.12. The "visitors" now residents ran that bill up while Mister was in the hospital. He just isn't up to a battle and I have no rights to demand payment. Interesting that the great nephew disposed of the bill detail. I asked MCI to sent the detail to my home. The tennant will pay his share but no more and I don't blame him.

I will share other financial concerns on the other thread

**sumas** · March-11-10, 11:38 PM

Thanks all, for comments, advice and support. This is like being in a very bad soap opera. People, in real life or perhaps I should say real time, give me advice but they just do not get the fact that I am helpless to take control of this situation.

My main concern is Mister. I really do not want to bother him with all these strange issues.

**Detroit_uke** · March-11-10, 11:51 PM

Sumas - go to: www.julieslist.homestead.com There is a large section on Caregiver support resources! Good luck to you!

**sumas** · March-12-10, 01:47 AM

detroit_uke, am familiar with Julies list. Great resource network! I do truely appreciate all advice and suggestions.

Like I said previously this is just like a very bad soap opera. People think I am brash and combative when in fact I am a gutless wonder. Not really up to this battle but I made a promise to restore this house to its former class.

**reddog289** · March-15-10, 01:40 AM

God Bless you Sumas for dealing with a clusterbleep with what your going through.

**sumas** · March-15-10, 07:09 AM

The latest twist is that the great nephew tells me Mister has stopped taking his pills and won't eat or drink anything.

We sat with him for a good part of Saturday. He ate for us, seemed in good spirits and his pain seemed manageble. We even joke and laughed a bit. When we left he asked me to bring him Ribs and lemons.

When I called Sunday morning, I get that news. The tennant confirmed he was screaming in pain so I told him what the nephew told me. I urged the nephews to contact Hospice. Not sure what they can do, I can only assume he is trying to hasten his death.

Conflicted as of what to do today, Mom has two more radiation treatments for her brain tumor. Want to talk to Mom's doctor about her prognosis but need to find out what is going on with Mister.

LodgeDodger · March-15-10, 08:12 AM

Originally Posted by sumas

The latest twist is that the great nephew tells me Mister has stopped taking his pills and won't eat or drink anything.

We sat with him for a good part of Saturday. He ate for us, seemed in good spirits and his pain seemed manageble. We even joke and laughed a bit. When we left he asked me to bring him Ribs and lemons.

When I called Sunday morning, I get that news. The tennant confirmed he was screaming in pain so I told him what the nephew told me. I urged the nephews to contact Hospice. Not sure what they can do, I can only assume he is trying to hasten his death.

Conflicted as of what to do today, Mom has two more radiation treatments for her brain tumor. Want to talk to Mom's doctor about her prognosis but need to find out what is going on with Mister.

Hospice needs to visit--and fast! They can have Mister pain-free in a very short time.

**sumas** · March-15-10, 07:04 PM

LD, I have deep respect for Hospice, I asked the nephews to call but they didn't. Another close friend visited Sunday [[we did not go Sunday) called and expressed concern that he was sitting in his excrement and I decided to call Hospice after I went this morning and found the same conditions.

Hospice sent out a nurse and a nurse caretaker [[ie: to clean him up) at my request. The nephews denied them admittance.

When we came back in the afternoon they had cleaned him up and sprayed Fabreeze.

Hospice was very cool though. A third nurse called and said she was coming in regardless. She gave them a two hour warning of her visit. She should be there around 8:00 this evening.

I am trying hard not to diss the relatives. Within their own frame work, they are trying hard and doing good. I think they mistrust "outsiders".

I even admit to some degree of angst. Mister's friends were his family and now family is attempting to displace us.

I just want him comfortable and clean.

LodgeDodger · March-15-10, 09:28 PM

I hope the people in the house allow the hospice nurse in to see Mister. It bothers me to hear he's in pain and isn't well-cared for. The nurses, in conjunction with the social worker and other team members, can be quite persuasive. I would bet they get in this evening.

The "Comfort Pack" is it in the house? Do the other family members know where it is located? There's some pretty heavy duty stuff in that box. Perhaps Mister would be better off in a hospice facility. It sounds as if he needs to leave the home in order to receive the help he needs. I'm not sure about the relatives in the home, but is there a danger leaving controlled substances in the house with the others? You've mentioned there's a young child in the home who appears to be unsupervised. Unless the meds are kept in a safe place, that child could swallow some of the meds.

Think about it, Mister would probably be better off with 24-hour care in a facility that would make sure he is pain-free, clean, and comfortable.

**sumas** · March-16-10, 03:37 AM

LD, you are right about primary care but I promised Mister we would keep him at home, years ago. It is unfortunate that we have others to care for too at this time.

The "visitors" took a trip to Chicago to meet up with relatives to collect household items. Supposed to be gone a day or so but they have been gone 4 days with no call to their Dad. No one misses them.

The comfort pack is in the fridge but is high up so the toddler can't get to it, if they do indeed come back. Mister rallied slightly. In the am, I did get him to take a pill and later when we went back, my husband and a nephew got him to take some comfort pack meds.

Mister did smile a few times today, he has dimples and I am a sucker for dimples. In my minds eye, I will always remember his smile.

The death watch is difficult. I am selfish and asked Mister to stick around a little longer. I want him to see spring again, but mostly, I will miss him so much and feel bad I am asking him to hang on to this silver string of life. I know he is on morphine but he talks about the call of the Lord and angels hovering.

**sumas** · March-16-10, 04:06 AM

Mister is gay. He has not been sexually active for many years. He is HIV positive but it never developed into AIDS. In his morphine fantasies, he demanded pills that would cure this and he wanted them immediately. I told the nephew to walk out the door and then come back. We gave him colored aspirin. He was happy.

I solicit thoughts from others. I know it was a trick but it did work for Mister, he figured he was cured..

LodgeDodger · March-16-10, 06:51 AM

Originally Posted by sumas

Mister is gay. He has not been sexually active for many years. He is HIV positive but it never developed into AIDS. In his morphine fantasies, he demanded pills that would cure this and he wanted them immediately. I told the nephew to walk out the door and then come back. We gave him colored aspirin. He was happy.

I solicit thoughts from others. I know it was a trick but it did work for Mister, he figured he was cured..

I had to tell my Mother her anti-anxiety pills were "water" pills. [[She was fixated on the water pills, as her body was swollen from holding so much water.) Otherwise, she would refuse them. Mother was so worked up by the time she entered hospice--she was out of her mind. She was angry with the world, with me, with family, and with herself. I knew a lot of it could be attributed to her brain not receiving enough oxygen. If she didn't take the pills, she was out of her mind. One day, when handing her the pill, she looked at me and asked if it was her water pill. I told her it was. Morphine was the "magic blue juice". She didn't like taking it, but I believe she forgot why she was taking it after a week or so.

**sumas** · March-16-10, 08:29 AM

Thanks LD you made me feel better about tricking Mister into takng his pills. It is very difficult dealing with aging relatives and friends.

My day will go something like this, visit MJ who has a bad heart condition, take Mom to radiation than off to Misters house to make sure he is comfortable, come home clean and make dinner for Mom.

I love and embrace my family and friends but have to admit my life is dead boring.

I am sure you wish to forget your Mom's final days. Sounds like you had it much harder than me. Sounds like your Mom turned into a she-devil. Just remember all the good things she was.

My experience with my Mom is that she doesn't remember anything. Made a Pot Roast last night and she didn't recognize a thing. It turned out great, very tender which is important since she sticks to an old dentist who can't seem to fix her dentures.

She wondered if I had cooked a new recipe. I only cook for her, her menus. She acts like everything we serve is something new and exotic. She didn't even remember gravy.

Mom over all is sweet but it does get on my last nerve sometimes when we have these inane converations. To not recognize a pot roast with veggies and gravy is trying to say the least. Also did brocholi in a lite cheese sauce which made her bitch. She has done that for years but just doesn't remember.

I have noticed that many people are viewing this thread and would like to encourage comments, shared elder moments, insight and stories.

**detroitbred** · March-16-10, 08:35 AM

Sumas, there is nothing wrong with what you told Mister. Saying anything along those lines that can help ease his suffering, physical or mental is necessary. He can no longer make rational decisions about his own care. When my dad was dying in Hospice, he kept saying that the doctors could do a heart transplant. His heart was failing fast, and we all knew that was not an option. But that was not the time for honesty......if beleiving that made his passing even just a little easier. [[The caregivers in Hospice were wonderful, I can't say enough about what those people do. They have a special place in heaven I'm sure. )

LodgeDodger · March-16-10, 11:34 AM

The last two weeks with Mother were peaceful. At first, she was a devil--it was her personality magnified. Mother never was an easy woman to live with. I loved her, but she could really cause problems.

The doctor feels Mother had a stroke in her sleep, then slipped into a coma. In fact, the afternoon I helped her shower, gave her a manicure, and fixed her hair. She told me she'd never been so tired in her life. I suggested she take a nap. While tucking her in, she turned to me and asked if I was planning to make 'your chicken soup'. I told her I would make it while she napped. I made her the soup, but she never woke.

Her last month was pain-free after hospice entered the picture. I had plenty of time those last days to just sit with Mother. [[I was lucky enough to have the opportunity to take the time off.) I'm not sure she "heard" me talking to her. I told her all the stuff she did that made me laugh. I talked about my Pop and sister who passed away years ago. It was cathartic for me. Most important, was having the opportunity to care for Mother when she needed me.

The last day was pretty gruesome. The last week, I'd slept on the floor next to her bed. I woke to an odd gurgling noise. Blood was draining from her mouth. After cleaning her up, I kept a number of towels on her shoulder to absorb the blood and kept changing them. All day I washed her face, kept changing her towels, and sat next to her. By the last day, I was ready for her to go. I watched her body change drastically in such a short time. By the last day, she was just a shell.

I hope I haven't scared anyone away from hospice. When the time comes to care for someone in hospice, it does seem to come naturally. There were times I felt I was over my head, but betterhalf kept reminding me that she was getting the best care, she was in a loving home, and even though I made mistakes, I was doing my best.

**sumas** · March-16-10, 06:26 PM

I am grateful you shared your experience. Might sound dumb to some people but I want to be with Mister when he departs. There is this crazy bond between us and I'll miss it when he is gone.

We did not go today mostly because we had other people we have been neglecting. The nephew called this evening and said Mister is fading fast.

Hubby went to spend the night with his Mom who has an apartment in an assisted living facility. She has a cardiologist appointment in the morning. She was hospitalized and had a pacemaker inserted a few weeks back so this is just a follow up visit.

Tomorrow, I 'll go first thing and then go back when hubbys home around three. My Mom's radiation treatments ended today so I'll be a little more free. If things look critical, I'll stay and sleep on the couch next to him.

I told him he needs to be sure to cross over since the house already has a resident ghost. That is actually true.

It is scary how bad he looks even compared to a few months ago. I know I'll lose it when he is gone but will have great memories to comfort me.

**Blueidone** · March-16-10, 07:15 PM

When my mother passed away, she was under hospice care, but in the hospital. We stood a round the clock vigil trying to make sure she was comfortable. This lasted for about 2 1/2 weeks. On the Saturday before she died [[the following Monday), she asked me why it was taking so long for her to die when the doctors had originally said it would only be a few days. She was ready and in fact looking forward to being out of pain. I talked to the hospice nurses and they said that as long as she kept eating and drinking, it would lengthen the time it would take. I confirmed with my mother that she indeed wanted to..as she put it.."stop the world and let her get off" and then told her what the nurse had said. She stopped eating and drinking at that point. We kept our vigil on Sunday. On Monday morning, due to circumstances with work and whatever, there was going to be a period of about 1 hour when no one was there. She died during that one hour...just drifted off to a better place after the nurse checked on her.

I was very upset because no one was there. I was feeling very guilty for having stopped by my office before going to the hospital. The nurses then told me that many times the dying individual waits until they are alone to really relax and let go. We had already let her know that we loved her and would never forget her...and that it was ok to go and be in that place where she could play golf to her heart's content and be out of pain.

I still miss her...every day...and that was 11 years ago. But I really feel she chose that time to leave us so that we didn't actually watch it happen. It was better to arrive at the hospital and see her laying there finally at peace and have that memory.

Every situation is different...as the caregiver I'm sure you will do what you think is right. God bless you for taking such good care of those who are close to you.

**sumas** · March-17-10, 01:30 AM

I know what you mean. I didn't visit Mister today but was planning to do a bed side vigil starting Wednesday. The call came just now. Mister has passed. His nephew was with him. I told his nephew to call Hospice. He called me back and said Hospice was sending a nurse to take care of everything.

I don't think reality will hit me until I see him. I am heading over there shortly but needed to clear my mind. M. a close friend and former tennant has all the paper work for his interment.

Right now I am numb. Wish my husband was home to go with me but all things considered I think he will handle this worse than me.

His neighbor Mrs. C came over today and prayed for him. She is almost an invalid herself. It was almost prophetic.

I guess now I'll be asking questions about how to conduct a wake.

Thank you everyone for support in this.