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how did a nurse that only saw my daddy one time know what was wrong w/him
one daughter
Posted: Wednesday, April 24, 2013 9:45 AM
Joined: 1/30/2013
Posts: 1980

I had a nurse from a memory unit come by to evaluate mom for placement.  She had come out before about 6 or 7 months ago.  I told her about my daddy passing last month.  & I told her that the Dr's couldn't keep his oxygen level up.  & she said she could tell his breathing wasn't good the time that she had met him.  I said how could you tell, but yet the VA nurse that comes out once a month didn't have a clue?  She explained to me that if his VA nurse only saw him while he was resting or sitting down comfortably she may have not noticed.  The nurse told me that if she had been the VA nurse she would have asked my daddy to get off the couch & into his wheelchair, go to the bathroom, come back & move from your wheelchair back to the couch & then she would be able to notice his breathing.  So is this something that the VA nurse should have caught?  Every time the VA nurse left my daddy's she would tell him he was ok.  Did she miss something.  Sometimes i really hate the VA. 

One year daddy wanted to go to the VA hospital in Biloxi so he could gain some weight & strength.  The VA calls it respite & daddy needed the break from mama.  Back then daddy was getting home health care paid for by the VA.  Well i asked them about daddy going to Biloxi.  They said he could have one or the other.  He could go 2 Biloxi for 1 month, but they break it down into 2 - 2 week trips or he could keep his home heatlh care.  And if chooses Biloxi he loses his home health care for a whole year.  So daddy went w/Biloxi.  January last year, he got his 2 weeks.  I started calling the VA for his other 2 weeks in Aug of last year, i was trying to beat their fiscal period in October.  They kept me giving me the run around.  Finally they tell me that there was a red flag on my daddy cause he had dementia & he's a drinker.  I said no sh$$ he had dementia & was a drinker back in January when he was there last. And his nurse knew he only drank about 6 beers a day.  I was so mad, daddy never got to go back to Biloxi.

Johanna C.
Posted: Thursday, April 25, 2013 9:19 AM
Joined: 12/9/2011
Posts: 11988

Hello One Daughter, I am sorry that you are having such a trying time.  You do deserve to have support to assist you through this most difficult period of grief and for your ongoing caregiving for your mother which requires so much from you.  You are not only suffering from your losses, you may also be approaching burnout and a bit of assistance can help so much.


As an RN, if you were seeing me, I would strongly suggest supportive counseling with a counselor within your community.  This can do much to assist in many ways.  You would have a safe place for support, for sorting things out, for helping to process your grief from loss of your father and with the anticipatory grief for the potential loss of your dear mother.  Counseling can also bring clarity and perspective to your situation and can even helping with decision making regarding your mother's ongoing care needs, including placement, which can be such a difficult process for a Caregiver. 


Seeking counseling is a source of strength which many people have chosen for themselves and it can bring so much to the person in need.  There is no shame in this, it is appropriate and wise.


If you feel you wish to do so, you can also attend a local bereavement support group which can assist with the grief of the loss of your father and even help you with the anticipatory grief regarding your mother.  Local Hospice will have such groups and often different churches also have such support  groups.     


You can also contact the Alzheimer's Association Helpline at (800) 272-3900, and ask to speak to a Care Consultant.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They can be very helpful and supportive and there is no fee for this service.


There is another part from your writing to address, so let's go onto "Part Two":


I am referring to the conversation with the nurse who came out to assess your mother for placement, who it appears visually saw your father while she was assessing your mother six or seven months ago.   She did not examine your father and he was not her patient and therefore she had no medical history or test results.


The assessment nurse, from your writing, appears to have been "Monday morning quarterbacking."  Hindsight is 20/20; and she has absolutely no way to know what the VA nurse was thinking or not.


As for having the person struggle off a chair onto a wheelchair (a taxing effort) and then roll himself to the bathroom and then back and then struggling back onto a chair, would not have been a picture of his standard respiratory status. 


The VA had a well known diagnosis of your father and had access to all testing and physician and clinic reports.  His respiratory status was well known.  The VA nurse would have assessed his respiratory function and may well have seen much, much more, but chose not to verbalize it.  Your father's condition was well-known and chronic and during assessment, the nurse probably documented her findings for the record, but did not verbalize all of them.


When the VA nurse said your father was, "Okay," that did not mean he was okay as having reverted to normal and there was no problem issue.  What the VA nurse probably meant was that, at that particular moment in time, your father was "okay," or stable for the condition he was already in . . . .


Losing your father has been a huge loss for you and the grief will continue to evolve for some time.  I have lost my parents, and sometimes we keep looking for reasons or for something to tell us more, even when there isn't anything more or it no longer holds meaning.  This is also a place where counseling can help bring peace.


As for the experience with "Biloxi" and the Respite Program, I am sorry things went the way they did.  There may well have been adequate reason why your father did not go back for his second two week period of respite, but it sounds as though you did not get adequate information or good communication to enable you to have better understanding.


Most of the time when this happens, it is because there is very strict criteria for such admission and stay and when these criteria are not met or there is a criteria for not admitting, this affects the outcome.


Perhaps there was an issue regarding alcohol consumption and one of the criteria may have been regarding alcoholism and/or other dynamics.  A six pack per day is a lot, so there may have been an issue with that in one way or another whether criteria, behavior or a combination of both.  Perhaps there simply was not a bed availability and there was a waiting list and he was farther down the list; that too may be a possiblity.


That being said, that is now far gone and is water under the bridge.  It is over and there is no changing any of that. 


Though it may be difficult, try not to dwell on that which is in the past and for which you can do nothing as that creates a barrier against healing.  Try to quietly let go of these things which are barriers so peace may find it's way in.  Learning to let go is very difficult, but when one learns, it is very liberating to one's spirit.  I've been there and also had to learn.


Both your father and mother would not have wanted you to suffer so; they would want you to find peace of mind and spirit.  Counseling can help you find this place.


I wish for solace and peace to find you and that you are able to reach out for the assistance you so deserve.


With my very best wishes,


Johanna C.

Posted: Thursday, April 25, 2013 10:18 AM
Joined: 12/20/2011
Posts: 276

Dear One daughter,

       Did you check to see if the hospice you had 4 your dad offers any type of bereavement therapy and I also recommend getting into a alz. dementia support group, This is to hard to try to get thru, believe me I know . I don't have a husband he committed suicide almost 3 yrs. ago my kids are grown and gone and now I don't have either of my parents. My mom and your dad died the same day. I have met twice with a bereavement counselor and 2nite is my 1st group, the group meets once a month. I fight everyday just to survive, I feel so sad for you it just doesn't seem the least bit fair. But unfortunately this is our reality and it SUCKS.Please follow thru with trying to find some help sending you much love strength and peace

one daughter
Posted: Thursday, April 25, 2013 10:07 PM
Joined: 1/30/2013
Posts: 1980

 Thank u Johanna & Angela 4 ur comments

 Johanna, I guess I'm just trying 2 figure out what happened. I just can't see how day was fine Wed nite, in the hospital on Thur & gone Monday morning. I am having a very difficult coping w/out my daddy. He & my mama are the closest people in my life. I don't have any kids. I do have my husband but that's a different kind of love. My bro's aren't worth much. I sit & cry every day not just because of my daddy, but watching my mama go thru this ALZ disease is also tearing me apart.

Angela, I did notice that ur mom passed on the same day as my daddy.  I don't no if there is a bereavement group 4 me. Ten minutes after I signed the paper work 4 Hospice, my daddy was gone. I do go 2 a ALZ support group & have been 4 over a year now. It's once a month. I was going 2 stroke (which is what happened 2 my daddy in 2010) support group. But I guess I don't need that one anymore. I try 2 b strong in front of my mama & I don't let her see me cry. I always act like I'm the HAPPIEST person in the world when I'm w/her, cause I don't need 4 her 2 b upset

The HARDEST thing is when I walk her back home she says 2 me " he's not home?" And I tell her "no Daddy's at work". The first place she looks is on the couch, cause that's where he stayed 24/7. And then she'll look in his room. & then she'll say "ur right, he's not here". GOD, it breaks my heart.

Johanna C.
Posted: Friday, April 26, 2013 8:37 AM
Joined: 12/9/2011
Posts: 11988

Dear one daughter, you can contact the Hospice that you had begun to fill out papers for and they can tell you the time and place of their support group. 


I understand having a parent one day and the next day unexpectedly having them gone.  My dear mother had a long course of disease and she had been declining.  Then, she began to improve.  The day before she died, she was doing much better and smiling and interacting.


The next morning, I was called to come as fast as I could.  She died 45 minutes after I got to her.


While it is heartbreaking, and even though we expect that death is to be the eventual outcome, it is still an emotional shock.


I so hope that you will take an hour or so for yourself to sit down and do some thinking about seeking a counselor for the assistance it can bring.  Your pain is great and you are reeling not only with the knowledge that father is gone, but that mother too is in the process of leaving.


Also, since  you are continuing under great stress, it may be time for you to see your primary care doctor and have a short checkup to see how your body is doing.  He may also be helpful with any medication which could possibly help coping with the situation if that is necessary and appropriate.  It is just so important for us not to forget our own bodies in the midst of the turmoil.


From what you have written, your words express the depth of your suffering and much more.  This is such a difficult thing and the heart knows what the heart knows; sometimes we have to bring help to ourselves so our hearts may begin to heal so that we may move into that place of peace which enables us to move forward.


Your husband, I am sure, can see the level of pain you are in, and he undoubtedly has also had this impact him greatly.  Any help you can get to bring yourself to peace and the ability to move forward will also be greatly helping him.


This is now your new pathway in life and all of us must face this as most of us do not have our parents outlive us and it is not an easy time.  By seeking counseling, you will be building the future with your dear husband as that is who you will be completing your own journey with.


Again, I so hope you are able to reach out for assistance and to bring about that peace that your parents would want you to have and which will also bring peace to your husband as you move forward hand in hand throughout your life together.


Sending hopeful wishes your way,


Johanna C.

Posted: Friday, April 26, 2013 11:57 AM
Joined: 11/30/2011
Posts: 2105

Easter of last year, my dad was having dinner with us.  He was at a care facility for almost two years, and he still could hold a conversation, could still joke around, could still dance holding on to his wheelchair.  I look at pictures of him on that day, and he looked pretty good, had a smile on.  One month later, my father was declining very, very quickly.  That month was a blur of doctor visits, with multiple complaints from my dad of not feeling well, having pain, contacting doctors, nurses, anybody to try and figure out what was going on.   My father saw three different doctors plus his assigned nurse practitioner in that last month for a variety of medical concerns, no one saw his end coming this soon. 


I called the nurse practitioner to tell her my dad was having so much difficulty, the care staff thought he was yelling out to get attention, but something was very wrong, she came, she saw him, she told me to get hospice services for him.  I did, but he passed away soon after his evaluation, before they had a chance to put their care plan in place for him.  Even the hospice team had no idea the end was so near.


I asked the staff at the care facility, I asked the nurse practitioner, I asked the hospice nurse, I asked everyone, what happened, what happened, what didn't I know?  No one could answer, no one saw it coming this fast.  There were no answers for me.


For months and months I ruminated over this, looking at everything I did, what did I miss, what didn't I do.  I did this over and over and over.   Next month will be a year since my father's death. 

The only conclusion is my father's body just worn down, he couldn't go any longer.  Now in looking back, I see the situation more clearly, I saw his struggles, very hard struggles.  He would tell me he was tired, he wasn't talking about being sleepy, I know that now.


Your loss is still very fresh and new and your feelings are very normal.  You have the added stress of caring for your mom and going through her illness with her.  You have not had time to grieve your father, you hit the ground running.  Much like me.  My mother died from Alzheimer's 12 years prior to my dad.   I didn't have time to grieve for my mother because I had to take care of my father.


What I wish I had done after my mother died, was to take some time for myself to cope with my mother's death, instead of hitting the ground running and throwing all of my efforts into my father.  Of course, I would take care of my dad, but I would also try very hard to take care of myself as well, to carve out time for myself.   I didn't do that and that had it's affect on me.  I think I threw myself in with everything I had to make up for what I thought I should have done for my mom.  I did do a lot for my mother, but I let guilt and my feelings of loss take over and I just completely overwhelmed myself with trying to cover everything for my dad mostly on my own.  A recipe for burn-out.


This is what you need to do very much for yourself right now, to take some time to find some peace and rest for your mind and your body.  It is important to be able to function. 


Please do find a grief support group, it will help you a lot.  Please do allow others to help with your mom, so you can have time to rest, to enjoy some time for yourself and so that you can function and carry on and feel well.  This is very important.


My father passed away because he was ready both in mind and body.  He just could not, did not want to continue the way he was going.  He was very uncomfortable and his body was very, very tired.  He chose the time to go, no one else had that say, he did.  He has peace and rest, and for him, I am very happy.  I am learning to live without the physical presence of my parents, but I remember them, they are still inside of me and I will always love them and they will always love me.  We'll see one another again one day, I'm sure of that.


Take care of yourself.  Grief can be a very long process, what is not clear at first, becomes more clear in time and you will incorporate everything that has happened into your heart and you will find peace, you will.

Posted: Wednesday, May 1, 2013 8:41 AM
Joined: 10/27/2012
Posts: 362

Dear One Daughter, 

I have read many of your posts and prayed for you often. What I hear in every post is anger and frustration. These negative emotions, while understandable, are very destructive and endanger your health. The fact that you are your mom's caregiver only compounds this dangerous situation. We all know how stressful that is in the best of situations. Please go to the counseling appointment. Your husband obviously loves you and is concerned for your emotional and physical health. Stress makes you sick unless you treat it. As many other board members have said, be kind to yourself. You deserve to take some time for yourself. You can not give to your mom and your family if you are all emptied out. 

If I could share one thing that has helped me the most, it is to be thankful. Even when things are dark, an attitude of gratitude lightens my life. The more I name what I am grateful for, the lighter my spirit becomes. Not to sound like a Pollyanna, but it really works. Gratitude changes perspective. It takes my focus off the problems and the negative emotions and refocuses my attention to all I have that is positive.  

Take care of yourself, 


one daughter
Posted: Wednesday, May 1, 2013 9:23 AM
Joined: 1/30/2013
Posts: 1980

KML You said:

"For months and months I ruminated over this, looking at everything I did, what did I miss, what didn't I do.  I did this over and over and over.   Next month will be a year since my father's death. 

The only conclusion is my father's body just worn down, he couldn't go any longer.  Now in looking back, I see the situation more clearly, I saw his struggles, very hard struggles.  He would tell me he was tired, he wasn't talking about being sleepy, I know that now.


Your loss is still very fresh and new and your feelings are very normal.  You have the added stress of caring for your mom and going through her illness with her.  You have not had time to grieve your father, you hit the ground running.  Much like me.  My mother died from Alzheimer's 12 years prior to my dad.   I didn't have time to grieve for my mother because I had to take care of my father."

That's exactly what I've done.  Now I'm feeling like I need my mama more than she needs me.  Last wk end was my brother's turn to watch over her.  I was so lonely & all it did was give me more time to think of my daddy.  What in the world am I going to do when she is gone?  Good Lord


Going to my counseling appt today.  I pray it helps me.


one daughter
Posted: Wednesday, May 1, 2013 9:26 AM
Joined: 1/30/2013
Posts: 1980

SCH, I can't help but feel anger & frustration.  I feel like i've been robbed.  Yesterday my poor mama must have asked me 5 times in 30 minutes where my daddy was at.  I hate lying to her.  But, i told her that he was at work.  It breaks my heart eveytime she asks me.  I am going 2 the appt today.  Thank you for caring.
Posted: Friday, May 3, 2013 9:20 AM
Joined: 10/27/2012
Posts: 362

How did the appointment go? Helpful I hope.


one daughter
Posted: Friday, May 3, 2013 6:42 PM
Joined: 1/30/2013
Posts: 1980

A lot of crying. As soon as she said "I see your here for grief", there I went , crying like a baby. But I've been told it takes more than one session. I plan on having more sessions.