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How long can I live like this?
markus8174
Posted: Monday, July 20, 2020 9:03 PM
Joined: 1/25/2018
Posts: 690


My DW has been away for 7+weeks. No visiting, no phone(she would need staff help to use one). Hospital-nursing home, with a short stay in a psyche center while in the nursing home. I'm not looking for help for my DW. I'm the one I'm worried about. I can't sleep in our bed, I can't sort her things, I can't seem to do any project that needs done in the house because I keep running into ghosts of my DW. An hour of tears and I start something else- same result. I can't even cook because one of the joys of my DW and my life was surprising her with a different special meal each morning noon and night for a year once she became unsafe n the kitchen. The last words she spoke to me were when the nurse had her trapped in another patients room, and was trying with 2 aids to force her into a wheelchair. The nurse called me and handed my DW the phone so I could tell her to follow their instructions. She said in a tearful, terrified voice; Honey, when are you coming home? I'm having some problems and I need your help!". I hear her saying that a dozen times a day, and each time it tears me apart.  I hear her saying that in my sleep, and wake up crying hysterically.  How long does this crippling grief go on?
ladyzetta
Posted: Monday, July 20, 2020 9:34 PM
Joined: 2/16/2017
Posts: 890


(((((( Dear Marcus)))))

I am so sorry you are feeling this way. You took such good care of your DW having to place her was very hard for you to do. But it was the right thing for both of you. I recommend you talking to your Doctor and getting something to help you get some sleep. Try sleeping on the couch or reclining in a chair you need to get some sleep. You need to take care of yourself because when the time comes they let you in to visit with your DW you want to be strong enough to do that. Please try to relax right now and get some sleep.  Hugs Zetta  


markus8174
Posted: Monday, July 20, 2020 9:51 PM
Joined: 1/25/2018
Posts: 690


LadyZ---My doc started one sleeper programmed and another as needed about 6 months ago when I told her I was sleeping 3-4 hours a night. In addition she started an antidepressant to help me cope with the stress. I'm afraid that my grief is so overwhelming that no med will help. I just wish it was getting better instead of worse. I spend so much time in tears I am going to have to get an order for IV rehydration soon. My sinuses have never been this clear. I know you can die from "broken heart syndrome" and I may be getting there.
ruthmendez
Posted: Monday, July 20, 2020 11:28 PM
Joined: 9/8/2017
Posts: 2314


Hello Markus. This sounds horrible.  Can you go for daily short walks (early morning or late afternoon to evening time-less heat)?  To a nearby park or around the neighborhood?  Take a bottled water with you.  

Do not drink anything with caffeine for a while.  Or less of it and none near end of day.  And no alcohol near end of day.

Any projects around the house should be done only in very short sessions.  Not too much at once.

I wish I can help.  

 


ladyzetta
Posted: Tuesday, July 21, 2020 10:57 AM
Joined: 2/16/2017
Posts: 890


Dear Markus.

How are you feeling this morning?  Did you get any sleep last night?  Ruth has so many good ideas to help you. Do you have family around that could help you? 

You are stronger then you think. I remember all the strength you gave your DW while caring for her. Stay strong for her. 

I also wish I could help. Hugs Zetta 

 


jfkoc
Posted: Tuesday, July 21, 2020 1:45 PM
Joined: 12/4/2011
Posts: 18953


I wish I could help too. It is horrible to go through a nightmare alone.
markus8174
Posted: Wednesday, July 22, 2020 6:14 AM
Joined: 1/25/2018
Posts: 690


Hi fellow travelers.

Sleep isn't my problem. Although I wake from nightmares almost every night, I get 6-8 hours. I never really understood the term "overwhelmed" before this. I'm paralyzed with grief. I don't expect a solution. I can't be the only person of our community to have felt this way after placing their other half into long term care. If anyone has gone through this- how long does it last? I know grief is different for every person. I just need to hear-"In 4 months I could think of him/her without tears. In 9 months I was able to resume some semblance of normal life.". I dread hearing it never goes away. If that is what I'm facing I'll be dead before my DW. Not suicide, just gradually imploding as soul is hollowed out from my torn heart outwards.


ladyzetta
Posted: Wednesday, July 22, 2020 4:34 PM
Joined: 2/16/2017
Posts: 890


Markus,  

  I will not say it never goes away but it will take time. Especially with the limited visiting due to the virus. 

When I placed my DH I was totally worn out and he needed more care then I was able to provide. You amazed me at how well you took care of you DW. I did my best but I am not a patience person and I wanted him to have the best care and that was not me

 I was able to visit everyday and stay all day if I wanted too. That's where things are different now. Due to the virus you can not do that. 

 When I visited I saw he was getting the best care possible and I saw a lot of loving residents in MC and a lot of loving caregivers. Seeing this eased my mind and I knew I did the right thing.

 So when you get to start visiting you need to look for all the good things that are happening and try to block out what you think might be happening. Yes my DH wanted to go home and it broke my heart every time I told him The Doctor said when you get stronger you can go home. He believed me and that was also sad. 

 My DH spent the last year of his life in the MC facility he got so much love and outstanding care and I felt like I had a new family. I visited with all the residents. Give it time You need to be strong for both of you. 

Hugs Zetta 


vernh
Posted: Wednesday, July 22, 2020 7:42 PM
Joined: 7/22/2020
Posts: 52


If you can pray, I advise it.

But don't pray for the impossible.  Don't pray for the burden to be lifted from you, pray for stronger shoulders.  Pray to become a better man, stronger, gentler, more understanding.

Stand outside yourself and ask, "Is this the man I am?  Am I the man I want to be?"  Make yourself into the man you admire.


markus8174
Posted: Thursday, July 23, 2020 9:16 AM
Joined: 1/25/2018
Posts: 690


Zetta- Part of the problem is from what limited phone interaction I've had with my DW's charge nurse, I find her to be a cruel, ignorant, mean-spirited witch. The care they are providing is atrocious. Easily preventable complications are killing her faster than if I had tied her to a tree in my back yard. From the report I'm getting from the witch my DW has deteriorated more in 8 weeks than she did in the last two years. I hate the facility I've placed her in, but no other facility that is even close to the reputation of her current memory care facility unit has an opening. At the rate they are neglecting and actively making her sicker, she will be dead long before a bed opens up elsewhere. In all honesty, there won't be enough of her left by the time a bed is available to make it worthwhile to transfer her.  What hurts most is she will die frightened, alone, and surrounded by people that will take pleasure in the fact that she's dying. With that thought filling my heart every day I don't know how I will make peace with the situation and move on.
ladyzetta
Posted: Thursday, July 23, 2020 4:08 PM
Joined: 2/16/2017
Posts: 890


Markus,

I am so sorry I did not realize it was that bad. Can you report them for neglect? And report the head nurse as well. You are doing the best you can and you will continue to fight for her your strength is what she needs right now. If you do wined  up taking her home I am sure you will have a solid plan in place for her care as well as for you. I had Home Instead come in and help me with my DH until it got to the point he needed 24/7. I was lucky that I had found a real good MC facility for my DH.  Take Care of Yourself. Hugs Zetta 


markus8174
Posted: Wednesday, July 29, 2020 12:41 PM
Joined: 1/25/2018
Posts: 690


Hi Folks,

  It's been 9 weeks since my beloved was placed into long term care. It's getting worse, not easier. I can't have "closure" because she is just admitted to a facility, not passed away. They are still trying to euthanize her. Can't get the medical staff to talk to me. Our PCP is appalled by the meds they are giving her. Still no other facility that can handle her care has a bed. I'm so depressed I cannot even drink coffee without breaking into tears. The cupboards, closets, drawers are all full of memories. Everywhere I look are things that were part of my DW. I'm looking into grief counseling, but almost all of them are "death specific". Private counselors may be available, but my one experience with a counseling service left me believing they are a bunch of charlatans. God isn't giving me much support from what I can feel in my life. Perhaps He is, and I'm just not aware of how much worse I'd be without him. Any words of advice would be appreciated. 


ladyzetta
Posted: Wednesday, July 29, 2020 8:08 PM
Joined: 2/16/2017
Posts: 890


Dear Markus,

I wish I had some comforting words to help you. God is with you I think your depression is so bad that your not allowing yourself to feel his presents. If you are a member of a church or have one close to you can you reach out to the Pastor to help you through this tough time.

Are you able to get out and walk and get some fresh air? Find a support group with people going through the same things you are. When I had to place my DH I went into a group that was at the MC facility and it really helped me. 

You will be in my prayers. Hugs Zetta     


ruthmendez
Posted: Thursday, July 30, 2020 12:14 AM
Joined: 9/8/2017
Posts: 2314


Markus, I can only repeat what the others have said. I’m so sorry. I really don’t know what to say. This is so frustrating. Why aren’t you able to speak with the medical staff? Can you ask for an appt. with one of the doctors? Is there a social worker? I’m not sure how all that works.
markus8174
Posted: Saturday, August 1, 2020 11:42 AM
Joined: 1/25/2018
Posts: 690


ladyz- I'm not sure I really understand who my God is anymore. I don't mean to be sacrilegious, but what I've always understood the Lord to promise doesn't seem to be what he is delivering. I choose not to believe God is like our current crop of politicians, but that means the error in understanding in in my side of the relationship. Maybe I should be venerating Budda, because I have so misunderstood the basics of my faith for all my adult life, I must be in the wrong. By definition God isn't wrong.
markus8174
Posted: Saturday, August 1, 2020 11:56 AM
Joined: 1/25/2018
Posts: 690


ruth- The docs and their nurse practitioners refuse to, as her doctor said, "waste their time talking about things they are not going to change." by talking to me. I have no burning desire to converse with the pompous, megalomaniacal asp that is her current managing physician. I would like to talk to the nurse practitioner. Even if she doesn't like me, she may give me more professional courtesy since we are both RNs. I've had a request for that on the chart, which has been repeated twice now, for 10 days.  No calls yet .I keep lowering my expectations and I still can't seem to find where to place the bar. I did tell the Director of Nursing that the institution seems to be doing anything in it's power to euthanize my DW. She spoke to the medical staff about the most urgent of my concerns and managed to get it resolved. Lots more left, but she does run the place, I can't expect her to spend hours convincing the medical staff to address my DW's needs.
jfkoc
Posted: Saturday, August 1, 2020 2:13 PM
Joined: 12/4/2011
Posts: 18953


I hate this for you. I would be screaming, pacing, crying a lot. 

While we can not resolve this for you we are here...virtually standing by your side as you walk in this nightmare.

Praying? God? I understand. I think.


markus8174
Posted: Monday, August 3, 2020 7:13 AM
Joined: 1/25/2018
Posts: 690


Fellow travelers.

Thanks for the warm wishes, but I still need an answer to my question. Has anyone still on this board experienced this kind of grief after placing a loved one into long term care? And how long was it before you could function normally to some degree?  It's getting worse not better and I'm going on the 3rd month.


ladyzetta
Posted: Monday, August 3, 2020 7:20 PM
Joined: 2/16/2017
Posts: 890


Markus,

I did experience a lot of grief after I placed my DH in the MC facility. It was easier for me to handle because I was able to visit with him daily so I was able to see him getting the care he needed. 

Will they let you in to visit with her yet?  The visit will be hard on you but it may be a good thing for you just to go in and hold her hand and sit with her for awhile.  This is something I was able to do daily and it helped me. 

Markus, I know it is hard but you need to take care of yourself as well.   Hugs Zetta . 


markus8174
Posted: Wednesday, August 5, 2020 12:20 PM
Joined: 1/25/2018
Posts: 690


ladyzetta-no visiting at all. Once she is healthy enough for visitors it's outside, masks on, 6 feet apart at all times, supervised by a staff member, NO touching for any reason. I can't imagine visiting under those rules. I break down seeing her coffee cup in the cupboard. Actually seeing her would kill both of us. The facility has so damaged her at this point I doubt she has any idea who I am or what we meant to each other. Her care had been horrible from what I can tell on the phone, but there isn't anyplace else that will take her. I can't manage her at home anymore. I doubt she'll get any of her mind back as bad as the care has been. I grieve for her loss every day, all day. There is nothing of "me" in the house. It's all "her" or "us".  Sometimes I'm sorry I ever got married to her. I love her more than life itself, but this kind of pain is unendurable, and it gets worse every day.
markus8174
Posted: Sunday, August 9, 2020 8:13 PM
Joined: 1/25/2018
Posts: 690


Newest update, my DW has lost 20% of her total body weight in 9 1/2/ weeks. They won't give her appropriate psych meds for fear they will lose brownie points with CMM, but they will starve and dehydrate a patient and not be concerned about it till she has dropped 1/5 of her total weight. I really hate nursing homes more than I ever thought I would.
ladyzetta
Posted: Monday, August 10, 2020 5:05 PM
Joined: 2/16/2017
Posts: 890


Dear Markus,

You are doing the best you can for your DW and I am sure she knows you are.

How are you holding up. You are her strength so you need to hold up for her as well as for yourself.  Hugs Zetta 


Ernie123
Posted: Friday, August 21, 2020 8:19 PM
Joined: 5/5/2019
Posts: 35


Marcus: All I can offer is my sympathy and total understanding of your anguish. I am traveling the same road. Even now, seven months after my DW of 52 years had to be placed in memory care, I still have to carry a small towel in my car for tears after a visit. Most days now are better for me now than the first months but like you I am  triggered by the smallest things I see or hear that remind me of our shared life which is gone. Seeing a hummingbird at her flowers which she loved or hearing a favorite bird now brings immediate tears as I recall the past shared enjoyment. You and I are living in a hole of grief with the world above us. Most friends, even those who have stayed in touch over the last few challenging years, don’t have a clue. When a spouse dies the loss is acknowledged with wakes and funerals and social custom. Our grief and loss at this point is ambiguous but just as real in so many ways. What is different is it continues on and on with relentless stress. I am terribly lonely and miss her presence constantly. I have found no easy answer other than keeping myself as busy as I can. I too am waiting for the passage of time to dull my sense of loss and stress. I feel I can honestly share these feelings with strangers on this message board and gain some relief from the exercise. We all must carry our burdens alone but listening to others and opening up and sharing our raw feelings is therapeutic I believe. I hope it gives you some consolation to know you are not alone and there are many others like me who understand and wish you the strength to build a new life.
markus8174
Posted: Saturday, August 22, 2020 3:04 PM
Joined: 1/25/2018
Posts: 690


Ernie- thanks for your reply. Although it is a bit disheartening to hear that 7 months in you are still being hit by stabbing memories of the times you had together. I'm not sure what your state is allowing for visiting, but here I can schedule a visit(spaces are extremely limited) for a 25 minute visit, outside, masks, 6 feet or more apart, NO CONTACT. I've had more intimate job interviews.  I haven't visited yet in almost 3 months because I couldn't handle her begging me to take her home. I would, and I know that would be a mistake. After her children visited 2 weeks ago and she had NO idea who they were, maybe I can get through a visit where I am just a nice older staff member that kept her and he caregiver company for a while outside. If she knows me, and asks me, I am still afraid I'll sign her out AMA and pile her in  the car. Even worse, whether she asks to come home or not, I'm still afraid I'll lose my mind and bundle her off to our car. I just want to hug her one more time, hold her hand, brush her hair, give her a gentle kiss goodnight. If I had a belief the memory care unit was providing the best possible care, I would be better able to handle things. I don't. The staff I have talked to have been cold, clinical, mean-spirited, and ignorant.  Essentially they have done everything in their power to euthanize my beloved short of holding a pillow over her face. I get the feeling a patient who knows where they are, wants to interact with their family, makes demands of the staff, is much more difficult to take care of than an infantile, patient who spends all their free time rocking and talking to  a doll.
FrancineB4
Posted: Saturday, October 10, 2020 1:48 PM
Joined: 10/9/2020
Posts: 4


Hi Marcus,

I don't have a good timeline and I haven't experienced a spouse with this disease. I lost my mother to the disease and am losing my father now. I will say this about grief- it does get easier and it transforms in the process. It starts all consuming-- like the state you are in now, and then it becomes like a thief in the night. You are going along and WHAM-O, something seemingly from out of nowhere can set it off. I don't think it ever goes away completely, but at some point it changes from a thief in the night to something more like a book that you can take off the shelf and flip through for awhile and then put it back. 

The stress of the dementia and dealing with the care providers makes the process so much more complicated. But I promise that there will be a day that you will notice there are moments in which you are not in agony.