A Thread for prayers, good vibes and what have you

[MarkEagleUSA]

Re: A Thread for prayers, good vibes and what have you

The facility is recommending additional assistance, whether it be a live-in caregiver, a skilled nursing facility, or perhaps even hospice care. We are meeting with the hospice people tomorrow after they do an evaluation. To say this has put a damper on my already down mood for the holidays is an understatement.

Last week's meeting with the hospice people was postponed and we met Tuesday morning.

While there are a few details to be ironed out, the plan for now is to move my aunt into a shared room (saving a substantial amount of money). Hospice will be providing a caretaker for at least 2 hrs per day, 5 days per week. There's some wiggle room there and they could end up providing 7 days/week. We will also be getting her a caretaker for 8 hrs/day to work around the hospice care so that she essentially has someone with her from wake-up through bed time. Any money saved from the move to a shared room gets eaten up by the caretaker (and then some; also not covered by medicare). The hospice services will be covered 100%.

Now that we've addressed the immediate daily care issues, I still have a lot of work to do regarding her finances. She will be out of money within the next 6-8 months. I've been told her income (hefty pension and SS) precludes her from normal state aid but we were able to get her on a waiting list for a program that is supposed to provide medical services while we continue to pay for her housing/living arrangements (unfortunately that's a 7-12 month wait after her assets fall below a certain threshold that we're 2 or 3 months away from). The social workers from hospice are going to be contacting me in the next few days to schedule a meeting where they can help steer me in the right direction for other financial options.

The hospice evaluation termed her as "end stage dementia" so there is an unspoken concensus that she probably won't make next Christmas. She is now wheelchair-bound, unable to feed herself, and needs to be helped in all physical activities. She is responding to questions with short, often one-word replies but will not initiate any conversation (such as asking to go to the bathroom).

I'm feeling a little better today about her physical/mental situation, but the financial side is still weighing heavily on me. My first concern is her comfort, dignity, and quality of life since she's got so little of any of those that left

[St. Clown]

Re: A Thread for prayers, good vibes and what have you

I never dreamed I'd be asking complete strangers on a hockey forum for this, but I guess everyone needs thoughts and prayers at some point.

The short story is I have an elderly aunt that is the last remaining relative on my dad's side of the family. Since my dad passed 46 yrs ago, my aunt has been like a second mother to me. For the past 5 years she has been in an assisted living facility for people with Alheimer's. As her only remaining next of kin, I have POA over her estate and am responsible for her care.

In the past year, her health has steadily declined. Last week, she spent a night at the hospital after collapsing, and they could find nothing medically wrong with her. Their best guess is just the nasty progression of the disease. To make matters worse, for about the past 6 months, she has not been communicating verbally at all... just moans and groans. Now she is unable to ambulate on her own as well.

The facility is recommending additional assistance, whether it be a live-in caregiver, a skilled nursing facility, or perhaps even hospice care. We are meeting with the hospice people tomorrow after they do an evaluation. To say this has put a damper on my already down mood for the holidays is an understatement.

In the past 2 days I have found myself praying that the good Lord does right by her so that she doesn't continue to suffer. That has placed another level of guilt on my shoulders but I feel it's in her best interest as she is simply existing at this point.

If you fine folks could manage to include us in your prayers during this difficult time, it would be greatly appreciated.

I seldom venture into this thread, so I had no idea that your situation was similar to what I just experienced. As you likely know by now, hospice care is 100% covered by Medicare, and from my family's experience hospice truly does relieve you of certain limited concerns and a greater number of burdens, if that makes sense. Hospice care is not the short-term situation it once was, my mom was in hospice care from roughly mid-February until her passing on 11/24. The timeline of the disease is different for everyone, and presents itself differently in many ways. If you have any questions about this, feel free to ask, either through my board email or through the board itself.

Best wishes to you during this time.

[MarkEagleUSA]

Re: A Thread for prayers, good vibes and what have you

If you have any questions about this, feel free to ask, either through my board email or through the board itself.

Thanks Clown. I know you went through this and appreciate your offer.

I experienced hospice first hand 33 years ago when my grandfather passed from terminal cancer. He was in a hospice facility for just over 3 weeks, but it was made so much easier for him and the family by the great folks at hospice.

The only way I can get my aunt into a hospice facility is if the doctor signs off stating she has less than 6 months to live (that's the threshold for Medicare coverage as well). The care they're going to provide at her current facility is covered 100%.

I'm essentially alone in this matter as there are no other immediate relatives. Emotionally it's been very difficult for me since it's really not in my comfort zone. My wife has been a huge help with her medical knowledge from being an EMT... she understands what these people are describing way better than me.

Again, I appreciate the offer.

[leswp1]

Re: A Thread for prayers, good vibes and what have you

Thinking of you MEUSA. This stuff can be convoluted. Sounds as if your aunt is going to have an amazing amt of support.

My Auntie did this for my Aunt. The finances were labor intensive, esp after my Aunt died, as things keep coming. Best advice she said she got was to use a file system for everything and keep a master index of everything she rec'd/applied for/filled in forms for as different agencies frequently asked for the same things again and again.

[walrus]

Re: A Thread for prayers, good vibes and what have you

Mark
both my parents ended up with dementia and/or Alzheimers, don't have much to add but I hope you can get through this ok, its a tough road ahead. You are doing the right thing by trying to make her as comfortable as possible. She won't be able to communicate whether its working or not but its the best you can do. Good luck
one other thing you might touch base with a lawyer who specializes in Elder care

[MarkEagleUSA]

Re: A Thread for prayers, good vibes and what have you

I spent over 2 hours on the phone with the hospice social worker today. She was absolutely great, and did a tremendous job of easing many of my concerns. Probably the most important thing she did was to explain, in very easy to understand terms, that my financial concerns about running out of money within the next year (probably a lot sooner), while warranted, may never come to be. To put it bluntly, having been diagnosed as end stage, it may not ever be an issue. She's the first one I've spoken to in the past few weeks to put it out there like that. Everyone else has been non-committal whenever I've asked the question. As tough as it is to fathom that eventuality, it's a fact that needed to be addressed. That said, she agreed that we need to be prepared, and she will be looking into alternatives for us to explore over the next week.

I'm feeling better about the whole situation than I have in quite a while.

[leswp1]

Re: A Thread for prayers, good vibes and what have you

I spent over 2 hours on the phone with the hospice social worker today. She was absolutely great, and did a tremendous job of easing many of my concerns. Probably the most important thing she did was to explain, in very easy to understand terms, that my financial concerns about running out of money within the next year (probably a lot sooner), while warranted, may never come to be. To put it bluntly, having been diagnosed as end stage, it may not ever be an issue. She's the first one I've spoken to in the past few weeks to put it out there like that. Everyone else has been non-committal whenever I've asked the question. As tough as it is to fathom that eventuality, it's a fact that needed to be addressed. That said, she agreed that we need to be prepared, and she will be looking into alternatives for us to explore over the next week.

I'm feeling better about the whole situation than I have in quite a while.

Glad you have someone who is so pragmatic to help you!

[MarkEagleUSA]

Re: A Thread for prayers, good vibes and what have you

Glad you have someone who is so pragmatic to help you!

From a prior experience with hospice 32 yrs ago when my grandfather passed, it didn't really surprise me. The entire conversation today was helpful on so many levels.

[Bob Gray]

Re: A Thread for prayers, good vibes and what have you

Both my experiences around hospice in recent years (mom and stepmom), they were really great to work with. Saying some prayers for you Mark.


On our foster placement, the little boy was moved to another home (where a sibling was), so we're waiting for our next placement. It's hard, as they call and ask if you'll take a given child, and you say yes, and then they don't call back a second time, with you eventually figuring out you weren't the one selected. We've had a number of these false starts, so to speak.

[MarkEagleUSA]

Re: A Thread for prayers, good vibes and what have you

Both my experiences around hospice in recent years (mom and stepmom), they were really great to work with. Saying some prayers for you Mark.

Thanks Bob.

Got one of "those" phone calls this morning. She has apparently taken a drastic turn for the worse since the hospice nurse was there Saturday afternoon. So much so that the nurse is implementing "comfort measures". The director of the facility (who called me) thinks it will be soon.

They were waiting for her doctor to sign some papers and for the pharmacy to deliver some "supplies" so they could begin getting her "comfortable". They think she's exhibiting signs of renal failure as her skin is very discolored; she's incoherent and they don't even want to try to get her out of bed.

My reply to all this was to please do everything possible so that she doesn't suffer. I've said several prayers myself in the past 2 hours and asked the Man upstairs to do the right thing.

[St. Clown]

Re: A Thread for prayers, good vibes and what have you

Thanks Bob.

Got one of "those" phone calls this morning. She has apparently taken a drastic turn for the worse since the hospice nurse was there Saturday afternoon. So much so that the nurse is implementing "comfort measures". The director of the facility (who called me) thinks it will be soon.

They were waiting for her doctor to sign some papers and for the pharmacy to deliver some "supplies" so they could begin getting her "comfortable". They think she's exhibiting signs of renal failure as her skin is very discolored; she's incoherent and they don't even want to try to get her out of bed.

My reply to all this was to please do everything possible so that she doesn't suffer. I've said several prayers myself in the past 2 hours and asked the Man upstairs to do the right thing.

Best of luck to your aunt and you, Mark. I really hope they can control her pain.

[Siouxfaninseattle]

Re: A Thread for prayers, good vibes and what have you

Thanks Bob.

Got one of "those" phone calls this morning. She has apparently taken a drastic turn for the worse since the hospice nurse was there Saturday afternoon. So much so that the nurse is implementing "comfort measures". The director of the facility (who called me) thinks it will be soon.

They were waiting for her doctor to sign some papers and for the pharmacy to deliver some "supplies" so they could begin getting her "comfortable". They think she's exhibiting signs of renal failure as her skin is very discolored; she's incoherent and they don't even want to try to get her out of bed.

My reply to all this was to please do everything possible so that she doesn't suffer. I've said several prayers myself in the past 2 hours and asked the Man upstairs to do the right thing.

More prayers for her and you.

[leswp1]

Re: A Thread for prayers, good vibes and what have you

Thanks Bob.

Got one of "those" phone calls this morning. She has apparently taken a drastic turn for the worse since the hospice nurse was there Saturday afternoon. So much so that the nurse is implementing "comfort measures". The director of the facility (who called me) thinks it will be soon.

They were waiting for her doctor to sign some papers and for the pharmacy to deliver some "supplies" so they could begin getting her "comfortable". They think she's exhibiting signs of renal failure as her skin is very discolored; she's incoherent and they don't even want to try to get her out of bed.

My reply to all this was to please do everything possible so that she doesn't suffer. I've said several prayers myself in the past 2 hours and asked the Man upstairs to do the right thing.

Prayers for you all and for those caring for her. Sounds like she has decided to be done. I am glad she is in a place that can take care of her well.

[leswp1]

Re: A Thread for prayers, good vibes and what have you

Need some prayers for my Mum and our family. She has scheduled surgery without a clear plan for post op. We are all very concerned but she doesn't seem to be able to get it together. Lots of nastiness as we try to get her to work out what needs to be done. Not a lot of love being spread around right now

[MarkEagleUSA]

Re: A Thread for prayers, good vibes and what have you

Prayers your way les.

I was so out of sorts this afternoon i decided to drive to Hartford to watch some hockey. Hasn't really worked yet so I'm hoping game 2 with my Bobcats does the trick.