Wondering......

[scba]

I don`t think we can "fix" what it is because of what has happened, and the effect of that on us. We can work through it. 

 

[Gwenivere]

I know we can’t fix it because we can’t have them back.  My fear is I won’t be able to work thru it.  

[kayc]

I think working through it is a continual process, not something we get done with.  We have our ups and downs...

[Cookie]

On ‎02‎/‎20‎/‎2019 at 3:51 PM, Gwenivere said:

I got another dog too, Cookie, after losing Steve and our golden.  Still ad our lab mix.  It was the work of dealing with a puppy at first, but the same thing happened.  It triggered th grief bigtime.  He wasn’t here for anyything from choosing her, watching her grow up and influencing her socially.  I also made a rush decision filling that void.  Now I see how I was never alone with our dogs.  It tears me up at times because I get scared with no back up for emergencies and just plain feeling a full family as that is what I’ve known for 30 years.  I almost hate to say it but I love her, but it isn’t the same and I feel bad about it.  Like I am cheating her in ways.  She’s also way too bonded to me an I am not used to that.  What your feeling makes perfect sense to me.

As usual, just because we look normal does not mean we are.  I’ve never felt this bad and it’s 4 years.  Hugs to you.

Thanks, Gwen.  Yes, I love Rio but sometimes don't want him (oh, I hate admitting that).  I think I made too quick a decision too.  I am also feeling scared and think I was trying to recreate what I had with John and the dogs.  Poor Rio can't measure up to the other dogs.  I do love him and am doing my best.  Wish I had known I would feel this way.  Thanks so much for sharing....fondly, Cookie

[Gwenivere]

Wish I could really hug you, Cookie.  We ARE feeling the same.  ❤️❤️❤️

[kayc]

On 2/26/2019 at 1:13 PM, Cookie said:

Poor Rio can't measure up to the other dogs.  I do love him and am doing my best.  Wish I had known I would feel this way.

Sometimes I think it's not the dog or their personality so much as it's the fact they weren't part of that shared history.  I hope in time you will grow to love Rio as much as the others, it has been that way for me and Arlie...and he is absolutely the opposite of Lucky, the dog George and I had together.  I understand, I've lost each and every pet George and I had together and some newer ones to boot!

[mlg]

After reading these posts I have so many things running around in my head I feel like it could explode wanting to help all of you but I haven't healed myself. I just hope some of my comments will help some of you in some way.

1. First of all there are different steps we ALL have to get through to move along in this journey.  None of us will go through them in exactly the same manner and some of us will revisit some of the phases before we get to another one.  That doesn't mean there is something wrong with us. Denial and anger are probably two of the biggest ones. Some people spend "seconds" in a phase and others could spend years.  Some of us will never go through some of the phases.

2. Joining groups is good but sometimes you have to search to find the right ones.  Just like this group, sometimes I have a hard time getting people to see the possible value of it.  What I like is that it is here 24/7.  I can read responses and know that I'm not going bonkers because others are feeling the same way.  I found that what made me feel the best were the things that helped others like the Grab and go lunches we do for the underprivileged kids in the summer. The community garden which gives me fresh produce but also gives it to the Food Pantry and the Senior Center. Missions for Taylorville which initially helped people in our town twice a year with things they couldn't do for themselves, like pull weeds, paint porches and foundations, build lots for many to help them become more independent, paint houses, etc. This all changed 12/1/18 when our town was struck with an EF3 tornado which wiped one entire part of our town. Luckily we had no fatalities. Our focus now is to help the un and underinsured. Thus far we have given $80000 out to help these people but because of the weather there isn't a lot we can do to help them get their lives back in order. Once the weather breaks hopefully we will be able to help in more ways, but right now some of the natives are getting restless. We keep telling when the time is right we'll try to help them more but that doesn't mean much when you have no house, you are living in strange place and just want your life back together.

3. Hospice is a really touchy subject at times. By it's definition it is felt that the patient will not make it in this world for more that 6 mos..  That scares the bageebers  out of a lot of people because they feel you are not going to do anything but just let them die. Hospice is suppose to help the patient and their family and sometimes friends , emotionally, physically, nutritionally, religiously, etc.  It is to help you to have the best quality of life as it can. They don't understand that some people get off of hospice and live several more years.  It is not just for patients with cancer; it is for diabetics, those with COPD, those with kidney failure, etc.  I think a lot of Dr's haven't had a lot of experience with it so don't feel comfortable with it so they are hesitant until the last minute so the patient and family don't get the benefit.  Having to stop some treatments to be on hospice scares them also. Dr's worry that you will sue them and patients feel they've been hung out to dry.                                                                                                         I had 3 wonderful experiences with hospice but the one that counted the most (my husband) was a disaster from the opening of the gate. They were to call us the day he got out of the hospital. At 7pm we hadn't heard from anyone so I called.  That person was not the intake person but said she would contact them.  She called back and said they would be at our house at 10 am.  The nurse came and didn't have over half of the papers she needed.  She apologized and said she wasn't the one that was suppose to  be there but the other one had an emergency. OK  we'll try to forgive you .  The next day his case nurse came and asked if she could use the phone before we started because she had locked her keys in the car and she'd rather get the process started before she started with Tom ( guess it makes sense)  She got a call back and they couldn't do anything because she didn't own the car the home care did.  Another call to try to get this resolved. than another call and another.  Finally Tom who was sitting at the end of the kitchen table stood up and slammed on the table  and said when she got done with her blankety blank calls then she could come take care of him and went to the recliner in the livingroom.   These were just the first two days and there is much more that maybe I'll get in to later.  Just wanted to say hospice can and can't work and it will be with you for the rest of your life.

Enough of my rambling.  I hope something in this "rant" has helped at least one of you.

 

 

 

[enna]

How true what you say is to those points you have made, Mary Linda.  We have heard that not all hospices are the same.  It sounds like you did not have a good experience with the hospice for you and your husband.  This is tragic for a family who needs the care and concern from others at a time like this. 

My experience with hospice was the opposite.  The Hospice Team who worked with us was excellent.  I still remember each one of them as if it were yesterday (my husband passed in 2012).  My only regret is that we did not know to call them earlier.  The coordination of the Team was evident from day one.  Once the social worker visited and put things in motion our lives became easier. We chose to have the Hospice doctor seeing to my husband’s care because she would be available 24/7 as our Primary doctor could not be.  Our nurse came weekly and near the end daily, the CNA person was perfect and did her job with tenderness and love, we had access to a chaplain and a volunteer.  A hospice volunteer veteran visited a few times and this was a comfort to my husband who was a fighter pilot during WW11. When my husband was no longer able to be up and about our den became his special place.  We had all the necessary items provided by our nurse like a hospital bed for not only his comfort but to make it easier for us to care for him.  Our nurse made sure that my husband was as comfortable with medication as possible.  She spent time talking with me about what was going on whenever there was a change.  This Hospice Team was here for our family and a grief counselor was available to my family and me for a year after my husband died. Having the Team working with us freed me up to be a wife and not only his caregiver.  I could tell so many stories and without hospice, we would never have been able to keep my husband at home where he wanted to be.  I know not every family can have their family member remain at home.  When it is possible having a good hospice team available is a must.  

I am so glad you have had good experiences with hospice and so sorry that the one that counted most for you was not.  

[Kieron]

These last two posts have led me to realize that not only is it useless to wish things had worked out differently, but that it's equally possible that a potential hospice experience would have been unpleasant or unhelpful.

So little makes sense anymore.

[MartyT]

When Hospice Care Fails A Family

[mlg]

Marty, I actually did contact the hospice.  When it was centered in out town, it was wonderful and our local nurses were so empathetic and caring and could be to a house in a short time.  The hospital was then bought out and as you know big isn't always better. The one day Tom had not urinated but his bladder was distended and I tried everything I knew to do as a nurse. I didn't want to bother them through the night so I waited until 8 am to call.  I was told our nurse was in a meeting and they would have her call back.  I waited until 10 and called back again and had to leave another message.  After calling back again and again I finally got a call back after 4pm so the nurse said she would stop on her way home. I asked her if they still had Texas catheters because I felt part of the problem could have been that he was afraid of wetting the bed.  I realize as you get to life's end urine production slows down but I could tell he was uncomfortable.  It took several hours to go but once he did you could tell he was really uncomfortable.   The next day when our regular nurse came we were talking about the siituation and she said that she was not even at work the day before and they should have known that.  She was 100 miles away.  This was not the nurse's fault but the office staffs and when I sent my complaint I made sure they knew that.  The final night the poor nurse had to come almost 70 miles in the dark to a town she didn't know which I didn't feel  was fair to her or us.  When you are at the end minutes seem like hours anyway.  

They set up an appt. to speak with me.  I knew that part of the problem was that they had basically run off all of the local people and the one that was left was in Egypt on vacation.  I told them office staff definitely needed some training because I felt there was no excuse for someone to have to wait 8 hours for a response.  I don't think it take a genius to figure out that probably  the best thing to do would be to take the "hospice Home" as the center and draw a big circle to encompass their area.  Then put on there where all their nurses ate and if an area is short the partially encompass them with an extension from either side and set up an area for each section.  They kept trying to blame it all on the nurses and I finally asked if they did not read my letter because I specifically said that I wasn't complaining about the actual care once they got there but the continued trying to blame it on the nurse.  Honestly their visit was a big waste of time.  Finall people started finding out about other hospices and it put them basically out of business..   

Hospice is such a good program but it has to be set up and used correctly. Don't wait until the final hours to put pt's in hospice care. because then the pt nor the family get any benefit and at least around here that is what is done most of the time.

 

 

 

 

[MartyT]

Like so many other aspects of health care, Mary Linda, in many parts of the country, hospice is no longer what it was originally intended to be. I am so sorry this happened to you and your precious Tom. Not right, not fair. I shudder to think what the future will bring, and I pray that somebody somewhere will wake up before it's too late ~ and I know that it was already too late for you and your beloved . . . 

[Cookie]

I've been reading all the posts.  Our Hospice experience was one of the bad ones.  It started out good.  They came and assured us that they could take good care of John, manage his pain, etc. and were just a phone call away.  Well, nothing worked that way.  They couldn't manage his pain, only tried a few medicines and were not open to any suggestions from me.  I was doing a lot of research and found a lot of information about combination pain meds, etc.  I ended up feeling like I was always fighting with them.  The nurse was totally rigid.  Anyway, John suffered quite a bit as a result.  They ended up telling me that they had never had a throat cancer case and didn't quite know what to do, and they sure as heck weren't going to take any  suggestions from me.  They never came when I called.  Several times John was choking and I called and they got there anywhere from 5 to 7 hours later due to being tied up with another case.  They ended up saying the only solution was to have him in the hospital (where he did not want to be; that's why we were on  Hospice).  When he died, they never came for bereavement or the meds.  I had to bag them up and take them to the facility.  I ended up calling another Hospice a county over that I had not known was there before.  Their chaplain came right away and he was quite a comfort.  I wish I had known to call them earlier.  I was so angry for so long.  John was so trusting of them until they totally failed him and it was so sad.  It made me afraid of Hospice.  Don't know what I'll do if I get terminal something....Cookie

[Cookie]

On 3/5/2019 at 3:24 PM, kayc said:

Sometimes I think it's not the dog or their personality so much as it's the fact they weren't part of that shared history.  I hope in time you will grow to love Rio as much as the others, it has been that way for me and Arlie...and he is absolutely the opposite of Lucky, the dog George and I had together.  I understand, I've lost each and every pet George and I had together and some newer ones to boot!

Kayc:  I am loving Rio.  I think the problem with me is that I can't shake the sorrow of doing this without John.  It's ridiculous.  Wish  I could just accept that he's gone and move on.  I swear this hurts almost more then it ever did and I find myself getting this hopeless feeling of it never changing.  Really tired of the sorrow and depressed feelings about life.  Haven't ever been able to get back to a contented place.  Such despair sometimes.  But, Rio is a cutie and very loving.  He's going to be neutered next week at 6 months and I'm terribly nervous about it.  Hope it doesn't scare him to death.  He's made so much progress from the scaredy puppy he started out as.  Thanks for sharing....Cookie

[kayc]

The hospice care we received for my MIL for nearly three years when cancer was spreading through her body and she was bedridden, was wonderful...excepting the one that started an affair with my FIL...I won't go into my feelings about her or that situation.  But the other nurse was a godsend and I don't know how I would have managed mom's care without her.  She lived an hour from the city, this is a pretty remote rural area, and they came out twice a week to help.

[Gwenivere]

I don’t think I could have made it through Steve’s final years with hospice.  We were fortunate to have a great program here that I could call 24/7.  They even took over his meds and they were delivered by mail so cut out running to the pharmacy constantly for me.  They were there daily the last 3 weeks when he was in the 2 facilities he needed.  

[Mike's Girl]

"You're not going to master the rest of your life in one day.  Just relax.  Master the day.  Then just keep doing that every day."  This is my new motto.  Once day at a time.  It's amazing how much that phrase rings true.

[Gwenivere]

I’m not sure who you were addressing.  I am going into my 5th year without Steve and an intense grief I didn’t know could return with such a vengeance.  There will always be the intense sadness, but now I am having physical problems and have to face them alone.  Some days I’m not sure I can continue this loneliness and stay sane.  Attending to the physical maladies seems as pointless as what my life has become with no motivation without that someone that completed you for almost 40 years.

[kayc]

I didn't think she was addressing anyone in particular, just telling us her new motto.

 

[Gwenivere]

Oh......wayell.........you know how it is when you have restless fingers.  Plus it was right after my post so I assumed it was a response.  I fall back on my new excuse - quitting smoking.  My brain is what Steve called in his addled last months.....a bucket of snakes.  Thoughts hither and yon or totally elusive.

A great example was I wanted to make my cell phone ring louder for a call I was expecting.  Couldn’t find remember how.  It’s not a smart phone so stuff like that is hidden in weird places.   Go into T Mobile and they show me.  Get back to the car and can’t remember anything past getting to settings.  Trudge back in and have them walk me thru it again.  At least I remember the 2nd step now and it’s gravy from there.  

I should change my avatar to 🤪 and add some drool.  

[KarenK]

Gwen,

You are not alone. I am a "numbers" person. In my head, I retain SS #'s(mine, of course) along with Ron's and our son"s, plus various bank accts., pins, utility accts., phones, etc. You name it, it's there tucked away in the part of my brain that still functions. Yet, I can't retain the # from the caller ID two steps to the computer to check who called with the latest scam. Sometimes, I have to look three times just to check the number. So I will drool right along with you.

[Mike's Girl]

I didn't mean any disrespect to anyone and I'm sorry if I upset you.  I just wanted to share what my new motto is that is helping me get through day by day.  Much love and respect to all of you.  😍

[Gwenivere]

Not to worry. MG.  I think it’s great you found something that works for you.  No one is upset, certainly not me.  I’m just addled lately. 😁

[kayc]

No need to apologize, it's a good motto!  Whatever gets us through our day, right?!  To each of us different things work, sounds good to me!

[TomPB]

MG, your motto is basic for an AA member. Hard part is walking the walk vs talking the talk. Actually that's how I often answer the dreaded "How are you" that seems to have replaced "good morning" etc, tho the other day I said "not suicidal" and the cashier didn't miss a beat .