things I need to say

[tragedy or hope]

My unpdh has been hospitalized for 3 weeks. I have to wait 3 more days until I can see him due to covid isolation. He is very very sick. I have no idea if he will come home anytime soon or if at all. Or if he will be lucid and able to be aware when I am able to see him.

I have no control, i never did. I was the person who tried to get him to take better care of himself before we got sick. I did many things as a kind of prophylactic against the disease. I urged him to do the same. He refused. Made up his own mind, continued to keep his habits as they were.

Now that he is in such serious condition, I am very aware of how powerless I have always been. It is horrible to know how he is suffering. I am not ready to admit he will never be the same person even if he gets well enough to come home. If he does I could be a full time caretaker to a very dependent person.

I just wanted to say that we live in our circumstances hoping for change, thinking things will get better, crying, praying, researching our lives away, when the pd person continues to live the way they want to live.

I also want to say, it is really okay to love a pd. You really can't help who you love, and we are all broken imo about something in life. This is our 50th year of marriage. I decided about 5 years ago to appreciate everyday, because with age come health issues. We have been "celebrating" our 50th most of this year with travel and pleasant times together.

Gifted with compassion, many of us live all of our lives with someone who just cannot love back. Most people are doing the best they are capable of each day.

For anyone here filled with anger and resentment, I wish I could take that away for you. I understand why you feel like you do, but it is self-destructive if it continues. You must find a way to love yourself in spite of the one whose love you cannot have the way you want.  They too do their best even when it appears ugly and harsh.

That's all for now. I really want to see him when he is lucid and able to recognize me. I can't imagine being heartless and bitter at a time like this.

[SonofThunder]

Tragedy or Hope,

I am so very sorry you are experiencing this current health issue with your PDh and am also glad that you personally are able to find acceptance and self-love amidst the turmoil of your situation.  I will lift up your plight in thought and prayer for comfort.

SoT

[tragedy or hope]

Thank you SoT. Greatly appreciated.


More things I need to say:

I learned from a nurse over the phone the other day that he IS able to talk. In fact, this sweet toned, young woman told me they talked for an hour the other evening. She even told me some of the things he was talking to her about.  I understand that in isolation one may end up talking to the walls. It must be extremely taxing for an N.

What bothers me is that he has his phone, all calls are forwarded to voicemail and I get texts that are somewhat incomplete, or he does not answer my direct questions. His behavior is as if he can barely communicate. Because I am his target person, I am treated as a standby. This I have known, but I have spent much prayer and petitioning for his well-being. All I get is his standard love-bombing statements.

Again, acceptance is my only answer, but these kinds of things make a lasting impression. Years ago I was in the hospital unexpectedly. He was there in the room with me but obsessed with how to work his new phone so he could tell his friends to pray.

I don't think I had ever felt so abandoned and sad. He was frustrated and it was all he could talk about, not my serious condition or even share in my dismay.

Nothing has changed. I think often that God is my El Roi. "The God who sees me." What else could I want.

[bloomie]

tragedy and hope - I am glad you are sharing the things you need to say here with us.

These are deep and complicated emotional challenges - the life threatening illness your H is facing and you being separated from each other during this time. Very isolating for both of you and his lack of engagement hard to judge when you cannot see each other face to face.

All of this hurts and I am just so sorry.

[square]

Yes, it is absolutely okay to love a PD.

Are you just preparing for the possibility that he will suffer permenant damage or have you been told for sure he has? Three weeks is certainly serious.

I am baffled on your behalf that in this time of crisis and loneliness that he has not reached out to you or leaned on you. When apparently he can chat with others.

And it hurt to read his behavior when you were hospitalized.

[tragedy or hope]

I spoke to him today. He can only get 3 or 4 words out at a time and the sound of the oxygen is so overwhelming... I think I now understand why he hasn't called. He is on so many meds I don't know how often he is really lucid.  I also know he has been so isolated he is really lonely. No harm done to me, I have decided to put my judgement aside as my God has revealed to me this week that everything that goes on around me is NOT about me. It has freed me.

I know he means no harm, he is just extremely needy. Add isolation, illness, meds and an ugly hospitial room and I decided I need not think twice about it.

I have had to rescue him from a "Nurse Ratchet." ( a character the the movie one flew over the cuckoos nest) yesterday. I was so sad for him as I learned how overbearing bossy and loud she was. He retreated by not eating, drinking or seeming awake. she complained to me he was not doing these things. She talked over my every comment and when I told her to leave him alone... since she went in the room of a very sick man to "educate him on his condition and why it was important to eat and drink" she got defensive.

I called the supervising nurse and had her removed. I then texted H that nurse ratchet would never see him again. Amazing... he asked to sit in a chair and ate some food I had taken for him.

Today, again,  I had to speak up as the Dr. prescribed without telling me a very addictive benzodiazepine, for his restlessness. One which does more damage than good to someone his age. I feel like I have to fight the system. The Dr. who I asked to call me yesterday, has not called me yet for the second day.

I finally got a complete list of his meds this morning. If you don't ask they don't tell. So I am tired, do not want to fight this stuff, but if it were me, I would want me as my advocate. I will continue to pursue this physician. May have to call patient advocate.

By the way, NO one gets to make my H miserable... THAT's my job! HA!

Thank you so much for your kind support. My heart dropped to hear his voice this morning, so weak... but he IS getting better. Since I am an empath and live in my head... I want you to know you all mean so much to me. I only imagine who you might be.

Thank you for caring. It is very comforting.

[SonofThunder]

Thanks for the update. I will be keeping you and your H's health in thought and prayer.

SoT

[tragedy or hope]

Very bad day today.

I was sitting in a chair in the corner of H's hospital room. Nurses cannot get his stressed breathing under control. Alarms are going off, he is lying there with mask on struggling to breathe, the noise is a whooshing sound filling the room. His whole torso is trying to do the work. Nurses are in and out with syringes full of meds.

Suddenly one by one... people all dressed in black, notebooks and equipment in hand start filing into the room. A total of 15! Conversing on what decisions they need to make...No one sees me in the corner in a chair. Finally I say, can someone tell me what's going on?

A young intern stoops at my chair and tells me my husband is in great danger. He is not able to breathe, they will have to intubate him. Takes me out of the room into an office and tells me it does not look good, they will know more in a few hours. Back he goes to ICU.

I have to wait to see him there as they have to get things set up. I come back at appointed time after grabbing some food... a chaplain meets me at the doors of the unit. I began to see some of the same black clothed people come out of the unit. And one of the drs. who had spoken to me earlier in the day.

H had a cardiac arrest. For minutes, I don't know how long. Dr. said he can't promise but he thinks it may have been a short enough time for no brain damage.

Chaplin  had been in the room and saw what was going on but later told me he did not feel it was his place to tell me. H  was gone for minutes, but they revived him. Nurse runs out into the hall, "do you want to see him? "she says... He had just been revived. They let me go in and kiss him... still very unstable. Me too.

Very serious things are going on for him from infection to blood clots. Still doing tests. Tonight he was stable on ventilator.

I feel it is appropriate to say these things. Some people do not love their PD partner and I get that. I happen to love the man who has been a challenge to my soul for 50 years, and seeing him suffer puts new light on petty things I should have learned better skills to cope with. I do not feel foolish romanticism or dramatized emotion... I feel helpless, truly helpless to change any of it.

I am not looking forward to the days ahead. It will be hard no matter what. I am glad for the moments we have had this year that were good. It has always been in God's hands, and most of the time I have tried to take things out of his hand to make it what I want it to be. People of faith will get that.

Two times in one day my life became surreal. That's how fast things can change. Think about it. Is what you want really what you want?

[square]

T/H, I'm so sorry to read what has been happening. You must be feeling so many things - ironically, numbness might be one.

You can feel at peace with what you have brought to the relationship - you've been thoughtful and compassionate, and yes, human.

[SonofThunder]

 

Tragedy or Hope, thank you for taking the time for the update and so sorry that your husband and you are experiencing his deteriorating health.  I will continue to keep you in thought and prayer. 

SoT

[bloomie]

Such certainty of the love you have for him in the midst of uncertainty. Praying for that peace.. the kind beyond understanding to guard your heart and mind through the coming days.

[Worthy of Care]

Tragedy or Hope,

My heart feels for you and what you are going through. Praying for you and your H. Sending you care.

[Free2Bme]

Praying for your strength and comfort TH, sending virtual love to you during this difficult time.

[tragedy or hope]

He's gone.

He managed to squeeze my hand really tight during his dying process even under sedation. Our last real conversation was at least 5 week ago. covid had taken his breath away

I guess I will now find out what it is like to be without the negatives AND. positives of living with an N.

I am grateful for my faith walk all of these years. God had been preparing me for this for some time. Bittersweet.

[square]

Oh sweetheart, I'm so sorry. Actually crying for you.

[BeautifulCrazy]

 
I am so, so sorry, tragedy or hope!!

You are in my thoughts and prayers.

[bloomie]

Tragedy or Hope - I am so sorry! What an unexpected turn. My thoughts and prayers are with you as you process and grieve.

[Associate of Daniel]

I'm so sorry, Tragedy or Hope.  Such a difficult time for you.

Even though we've been separated/divorced for over 9 years, and even though things are definitely not amicable between me and my uNPD exH, I know I'll be devastated if he dies.

The relationship with a pd has layers that relationships with nons don't have.  The grief we have is not understood by outsiders.  But it is so very real.

You are in my prayers.

AOD

[bee well]

Im so so sorry for your loss, Tragedy or hope. Sending warm thoughts your way...

[SonofThunder]

Tragedy or hope,

I am so sorry for your loss and will be praying for comfort.  Your comment about seeing both sides, and your understanding of being prepped, is such a wise comment created in the deep walk of both faith and turmoil.  I will also be praying for those revelations and for you to start experiencing some healing, among the deep grief. 

There is another lady here on Out of the FOG who is walking a similar path and her insightful comments of healing and comfort among the grief of loss, is so very up-lifting. 

SoT