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Hi, Sweet Angels.

Sigh. I had a meeting with Mom's care team at the nursing home this week. Her Dr asked them to discuss with me about hospice. They were relieved that I'm already at least a little educated about what that means - thanks mostly to this board. I'm on no deadline to decide, so I'm opting to take the time to communicate with family, research the local agencies and make sure this is the best thing for Mom at this time.

For months the staff at the home have been encouraging her to drink fluids to avoid kidney failure. Last week she was on IV fluids for 2 days. By the end of the second day, all that fluid was putting a strain on her heart - low heart rate, difficulty breathing.

I asked them to check her for a UTI, as she has a history of strange stuff happening when she has one. Yup. So the Dr ordered more IV fluids and IV antibiotic, but her veins are not cooperating. Yesterday they took her off the IV and are injecting a different version of the same antibiotic.

She's been getting progressively dull, mentally and taking less interest in food - so you know she's sick. She's lost 7 lbs since last month.

My inclination is to see what happens with this UTI. Assuming that it clears, she may revert to "normal". I have asked the staff to try to get her up for at least one meal a day to keep her strength up.

Still having tension with the "brother from the north." But at least he's mostly staying out of my way for now. DH is holding his own and sent Mom some of his homemade pimiento cheese that she loves.

Thanks for any prayers, good thoughts, advice, etc. I've got to go start my day.

Love n hugs,
Barb
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Hello Barb,

It just never ends...I agree with Glenda to see if the antibiotics work this time. However, whether they do or they don't, her body may be beginning to close down more. If she doesn't rally, it would be good to check out the different hospice programs in your area as well as speaking with your family members

Hospice will not provide any invasive care. The purpose of hospice is to:

To support individuals and families coping with dying

To enhance quality of life through comfort care rather than treatment focused on cure

To aggressively treat and expertly manage all pain and physical symptoms associated with an individual's dying

To care for the whole person, addressing physical, emotional, psychological, spiritual, and social needs through an interdisciplinary team approach

To confirm the individual's and family's sense of self worth, individuality, autonomy, and security

To acknowledge and offer support for individuals and their family members facing the losses and grief associated with dying and the death of a loved one

To extend bereavement support for family members following the death of their loved one

To be a positive influence upon the understanding, compassionate treatment, and care of the dying and bereaved

She can be hospiced from the nursing home, at a family member's home as well or from the hospice unit in the hospital.

I think the most important thing to keep in mind is controlling the quality of her life..

We are here for you if you have more questions etc...

My thoughts and prayers are with you.

Blessings angel

gail
Thanks, Glenda and Gail.

Well, last nite, Mom mostly fed herself and put away most of the groceries on her plate. To me she seemed much more responsive and able to converse. Naturally, the gloomy brother disagrees... grrr. Placed a support call to our other brother to make sure that problem goes away soon.

I am going ahead with getting more educated about Mom's options going forward. However I think the UTI getting cleared up will help most right now.

Thanks, as always.
You are my heroes - the wind beneath my wings.

Love n hugs,
Barb


[This message has been edited by bamagirl (edited 11-08-2009).]
Hi, all.

Well, I've got to keep this short, but we had a major setback with Mom and she is now on hospice. We think she had a stroke overnite. Her heart rate is low, she's having apnea episodes and a few other endstage symptoms. Early this morning she was totally unresponsive. By this evening she can answer direct yes-no questions, but we can't understand much else when she talks. She will open her eyes and make focused eye contact for a few seconds if a new familiar voice enters the room and speaks to her or if I make any of our ritual conversation.

She's not on 24 hour vigil yet, but that could change any time. Most of the hospice staff already know her because they treat her roommate, so that's a comfort to her and me both.

I called all the sibs. My sister wants to try a phone call to her tomorrow. All the brothers declined a similar offer.

DH wants to be supportive of me, but doesn't really want to sit around the NH for hours... I don't really blame him. So I'm going up there again in the morning - unless I get a call to go before then.

Signing off to watch the rodeo finals on TV (big annual event in our household) and get some rest.

Thanks to all of you for all your good advice, prayers and warm thoughts all along. I'm in a much better place mentally and spiritually than I would be otherwise had you not been here.

Love n hugs,
Barb
Thanks, Glenda.

Mom is still with us. She is on what hospice calls Continous Care. Her heart rate is so low, all the medical folks are amazed. Her other vitals are good, except her blood pressure has a "wide-spread," which they say may explain why her blood is still circulating. She's only on oxygen and low-dose morphine. Most of the time she sleeps comfortably and is semi-responsive, again to direct questions, when awake.

It took two tries, but my sister did get to tell her what she wanted to by phone. She's wanting so badly to be here for Mom and for me, but her own health is poor. I told her to do what she felt best, but I couldn't see her putting herself at risk.

DH is so sweet. Even the dog knows something's up. I'm pretty tired, but trying not to overdo.

Time to go start my day. Let me know if I need to continue this in the end-of-life section.

Love n hugs,
Barb
Hi Barb:

Gosh, this brings back the memories - what a hard time and it is always right around the holidays it seems. I remember Dad's dog would not leave his side at the end (and he wasn't even allowed upstairs in Dad's bedroom). I, of course, let him stay - animals instinctively know...

I am glad your sister was able to communicate at least by phone during this time. This has got to be so hard on all of you! Just know that we are here for you and you are in my thoughts and prayers over this difficult holiday for you.

Hugs, Glenda
Thanks, Glenda.

Well, Mom passed Sunday evening - peacefully and with dignity, just as she wanted. I'm still in "holding it together" mode. Really though I'm feeling positive and peaceful myself. Hospice was so wonderful. They helped me set aside all my doubts that I had taken the right course with her care. I found myself comforting some of the NH staff who had grown so close to Mom these past few years.

My best friend met me at the funeral home yesterday and helped me shop for an outfit for Mom. The visitation is tomorrow evening, with the funeral in Texas on Saturday. I'm opting to drive out there rather than fly. After our long vacation drive this past summer I feel up for it. DH is wavering about whether to make the trip. It's a tough call, but we'll figure it out.

Two things I wanted to share about this part of the journey so far:

The funeral home sent an ambulance to fetch Mom. They asked me if I wanted her covered totally with a sheet, partially or what. I had no clue. Then I looked at Mom and it came to me, so I said "she would want to be covered." The ambulance crew and the hospice nurse said no one had ever said it that way and that was the perfect response. Score one for Mom.

The other thing is that pre-planning has been a blesssing, both from having to make so many decisions, but also because we locked in costs for a savings of close to $5000 in just 4 years!

Well, I have to go and may not get a chance to check in before the trip. Still accepting prayers and good thoughts for that and whatever else is ahead.

Love to all the caregiving angels here and elsewhere,
-Barb
Hello Barb...
My thoughts and prayers are with you during this time. May your journey be gentle and nurturing... and may your mother's transition be gentle and healing as well...

It's amazing... but when a loved one has transitioned, we may feel so relieved... this is such a sacredness at this time.. and then the sadness and loss can slip in.... but it is a time to honor your mother... celebrate her life...

Living here in Mexico has given me an opportunity to observe how we mourn in the states.. but in so many other countries... they celebrate the individual's life... and they have a knowingness that the cycle here on this physical plane is completed..

Hospice is a blessing... yes, I know there are some times when it isn't always one.. but generally, they provide such comfort and yes... the dignity with which your mother was able to let go.

And definitely a yes.. preplanning funerals.. not only for the cost of savings but it is truly much more difficult when you are pressed to make last minute decisions when a loved one has passed over.

Again, my thoughts and prayers are with you angel.... richest blessings in all you continue to do.. This past year has been one emotional roller coaster for you and you have been moving through it all beautifully.

2 life

gail
Thanks Gail. As usual, you are so right about these things. I have such a feeling of peace and well-being.

DH asked if I really needed to go to Texas. I told him that aside from having some paperwork at that end to do (which we've already done mostly by fax), I really want to finish the journey with Mom. He totally respects that and is supportive. His brother is back from Iraq for good and will be staying here to be with him and do my horse-keeping duties.

In doing all these things I've tried to be mindful that it's not just about me, or even Mom. There seem to be things that are important to each sib. My sister wanted to pick the minister - no problem. My Texas brother and cousins wanted to coordinate everyone's travel and room arrangements - fine by me. The weather is supposed to be nice, so my brother wants an outside service at graveside - wonderful. I was getting Mom's things at the NH yesterday. Having been there so long, she's accumulated lots of kitch - mostly donated by others that have no meaning to the family. One of the CNA's came by and asked if she could have a particular stuffed toy. One brother had sent Mom sugar-free chocolates in pretty tin boxes, which were collected in her closet. I called and asked if he wanted me to keep them for him. To my surprise he said yes, he actually did want them and a few other things he had sent to her.

We have a family tradition (on the Texas side) that after the funeral, we meet up somewhere less formal and have a little celebration for the person who passed. We swap favorite stories and memories, visit with far-flung folks, and generally blow off any tension and sadness that may be lingering. When the departed has had a long live well-lived, and the death was not unexpected, it's easier to do than when the person is younger, or the death is sudden.

So anyway, my brother and cousins are rather counting on having a little soiree' Saturday evening. I'm looking forward to it.

Well, DH is up. Time to get started with this day.

Love,
Barb


[This message has been edited by bamagirl (edited 12-09-2009).]
Dear Glenda.

As always, thanks for your prayers and kind thoughts.

I'm a list-maker by nature. I've had to start a new pocket-sized notebook to keep up with all the details and to-do's.

I'm a little surprised (and mildly irritated) at all the phone calls I'm getting. I had to re-think how long it takes me to do everything - not so much because I'm distracted about Mom (which I am to some extent), but because the phone keeps ringing. I may actually use all my cell minutes this month - LOL!

The visitation is this evening. I thought I'd have more done so I could get relaxed and focused for that all day... silly me.

I'll check in again after my trip and let ya'll know how it went.

Love n hugs,
Barb
Hi, I'm checking in post-funeral...

We had a small but upbeat gathering of family in Texas to honor and say good-bye to Mom. We were all so happy to be together, the cameras came out and it was almost a party atmosphere.

The graveside service was a little more formal and subdued. We were given an opportunity to speak. Several folks commented how I had done so much for Mom. So I turned it back around that Mom was (and is) my role model. I just did the things she wanted in the manner she taught me.

The funeral home and cemetary are together. That night they had a luminary memorial service for all the lost loved ones from the past year. We got to put luminaries on the graves of all our loved ones in the cemetary... which were quite a few. They were accepting donations for local hospice groups, which we gladly gave.

The church hosted a luncheon for us. The family stories started to flow. This was my Dad's hometown, so mostly we talked about his family ties to the community and some of the (really) powerful folks on the world stage he had met.

Later, after the luminary service, we got together again at the hotel and passed around old photos of Mom and letters between her and Dad I had found in a trunk in the attic. We swapped stories late into the night.

Sunday and Monday were the return roadtrip, with the weather not being so nice. The past couple of days have been spent doing all the notifications to Social Security, Medicaid, VA, insurance, alumni groups, etc. Social Security said to keep her December payment (which I have to turn over to Medicaid). The VA wants back the piddly $90 they sent her this month.

I've got an appointment today with my attorney to talk about probating her will. There's so little left to her estate. There are some outstanding funeral costs that were not allowed in the pre-arrangement contract - obits, flowers, airfare for her, and hairdressing. I already gave the sibs a heads up that I'll need help with these expenses mostly because I'm trying to pay off the credit cards and would prefer not to run up that debt further.

I think I could deal with all this were it not for the holidays and pressure to mail cards and gifts that I haven't bought yet, put up a tree I don't have, and set to rights the mess upstairs left by the gloomy brother so DH's grandkids will have a place to sleep when they visit next week. Oh, and a wedding gift for my niece, who's getting married this weekend out west.

At least I'm not in the position to host a wedding/reception in the midst of all this. Some relations didn't attend the funeral because they couldn't afford to do that and go to the wedding, too. Others had already used all their time off for the year and couldn't get away because of that.

Even so, there's never a convenient time for death. Mom looked so beautiful at rest. She was quite a "looker" in her youth. I could see her that way again, instead of a mass of medical conditions in a wheelchair or hospital bed. I'm glad Mom's at peace and free from all the physical ailments of the past 15 years or so. No more diets. No more insulin injections. No more Parkinson's spasms and freezes. No more pain.

My younger brother said he was praying for her to be in a peaceful and happy place after death. He said later the Holy Spirit whispered to him that his prayer had been answered.

It's hard to be sad when you hear news like that.

Well, I've rattled on too long, as usual.

Love n hugs,
Barb



[This message has been edited by bamagirl (edited 12-17-2009).]
Dear Barb:

Thank you for sharing such a graceful and peaceful finale. The warmth and remembrances you shared were lovely. Time does march on... Your dear Mom's memory will always be a part of the Christmas spirit. I always think of Dad on Thanksgiving.

Now sit back if you can and breathe. Merry Christmas to you and all caregivers. We are here for you. Keep us posted Barb as you move forward down new paths.

Hugs, Glenda
Dear Barb,
My condolences on the passing of your mom. I know how much you loved her and cared for her for many, many years. It's nice when others recognize what you did also.

I hope you can now take this time to take care of you. Try to put yourself first. I realize you still have your husband to care for, but now you have a little more time for you.

My mom continues her journey into the world of Alzheimer's. It's been about 7 years. For the past six months, she has been living in assisted living and she loves it. We couldn't ask for anything more. Okay, yes we could...for her to be more social. She stays in her room most of the day, but I do understand that it is a part of the disease, the insecurity and cutting oneself off from others. In any case, we lucked out, finding a place that is rated #5 out of a possible 5 !! And, my sister, the RN works evening shift there, so she is able to tuck mom into bed almost every night which is really a blessing. My other sister who cared for mom for the past 3-1/2 years can now take care of herself. As we all know, it is not easy caring for a loved one at home.

Barb, once again, my condolences to you and your family.

Warm wishes,
Miriam
Thanks, Glenda, for all your caring support.

It's been right at two years since we lost MIL. It makes the holidays a little harder to get excited about. If the grandkids weren't coming over, we wouldn't bother at all this year. I did get the cards and out of town gifts sent, at least.

Been having low moments the past few days. Sometimes I push ahead with what I'm doing. Sometimes I curl up next to DH and rest. Just taking it one day at a time - but that's my overall philosophy anyway.

Love n hugs,
Barb
Mimi, it's so good to hear that your Mom is doing well and the sisters are good with the current arrangement.

DH's brother is in the process of placing my FIL into a facility. I'm not sure what level his is. He's having heart and vascular issues on top of diabetes. He's started sundowning and gets really beligerent to where SIL can't deal with him anymore. I'm blessed that all of Mom's dimented moments were generally benign.

Hope you enjoy a happy holiday season.
Love n hugs,
Barb

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