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Hubby died just last week
Posted: Thursday, February 27, 2020 10:07 PM
Joined: 7/30/2013
Posts: 6037

He was approximately stage 7b. He had a seizure the morning of the 10th. First one ever. He yelled, fell backwards into a corner and then slid down to the floor moaning. I called hospice while it was still going on. Two nurses arrived pretty quickly. Hubby was clearly in a lot of pain and was unable to get up or even answer questions. One nurse called for a lift assist from the fire department. They got him into bed and a nurse gave him some morphine. His Home Instead caregiver showed up at 9:30. He helped me get hubby undressed and into a disposable brief. Hubby wasn't incontinent before this, but he wasn't able to get out of bed due to the pain. 

I didn't realize how seriously injured he was right away. We thought that he was having all over body aches due to the seizure. I gently touched different parts of his body and asked if it hurt there. He said yes to everything, but it was clear that his shoulders hurt the most, especially the right one. 

The next day, hospice sent over a radiology technician with a portable x-ray machine. She found that his right shoulder was dislocated, so I called 911 and had him transported to the hospital's ER. He still couldn't move, so they untucked his sheet and moved everything with him, including his pillow. 

At the hospital, they started with a couple of x-rays scans and got him on an IV. It was very busy at the hospital that day because of all the flu cases. Several doctors saw him. At around 10:00pm, and orthopedic surgeon tried to reset his shoulder. It didn't work, so they sent him for a CT scan. That showed more detail. They found that his left shoulder was fractured, but not too seriously. However, his right shoulder blade had a whole network of fractures. That was how our Tuesday went.

I was told that they were going to schedule him for a surgical suite on Wednesday, so they could try to reset his shoulder again. However, when that orthopedic surgeon got a look at the CT scan, he cancelled the procedure. He didn't get a chance to talk to me until Wednesday evening. Hubby had finally been moved to a regular room that afternoon. Like I said, the hospital was crazy busy at that time and they had no beds available for nearly 24 hours. The surgeon said that the only hope for that right shoulder was a partial replacement. He didn't seem keen on the idea because of hubby's dementia and the likelihood that rehab would be unsuccessful and that hubby was a fall risk, which could easily ruin the replacement. The doctor seemed relieved when I agreed that there would be no surgery. 

So, since there would be no surgery, they finally allowed him to eat and drink. They brought him a soft meal that night and he drank a lot of water. The nurse brought him his evening medications and I noticed that he had some trouble swallowing the pills. He had been having some swallowing issues on occasion since December. I had some friends from church stay with him that night so that I could go home and get some sleep. I can't be awake for two nights in a row.

The next morning, they brought him breakfast. I had started feeding him since he couldn't use either arm. The cream of wheat went down easily. He had problems with the scrambled eggs and French toast. It was like he couldn't figure out what to do with them. He would chew and move the food around his mouth, but he didn't swallow until i gave him something to drink. I asked them to bring him pureed food and he was able to eat everything. Later that day, a speech and language pathologist tested him and determined that he had no swallowing troubles and could eat a regular diet. I didn't care what she said, I insisted on pureed foods only. An occupational therapist and a physical therapist also came to see him. They managed to get him up and into a chair briefly. That was encouraging to me. That was Thursday. 

On Friday, they decided to discharge him since there would be no surgery. It was a long wait, naturally. Hospice arranged for an ambulance to bring him back home. They didn't show up until 4:30pm. After we got home, another friend brought over some dinner for him. I had asked for only pureed foods. She brought pureed stew and mashed potatoes with gravy. I wasn't impressed with her pureeing device. There were little chunks which hubby had difficulty swallowing. 

The hospice nurse came by with a bunch of supplies like chux, wipes, and briefs. She instructed me on how much morphine, Ativan, and Haldol to give him. He had become very agitated in the hospital and started hallucinating. First time for hallucinations too. The hospice doctor came later and approved him for hospice services again. Medicare won't pay for hospitalization and hospice services at the same time. That was Friday. 

On Saturday, the nurse and the chaplain came. They managed to pull hubby up in bed. He kept wiggling down trying to get out of bed, even though he couldn't. They also helped me get him into a dry brief. We were concerned that he hadn't urinated since his catheter was removed in the hospital on Friday. Fortunately, he was wet Saturday morning. 

All this time, I was hopeful that he would regain the use of his left arm so that he could walk again and use the toilet. He was left handed, so that would have helped. 

Hubby's caregiver was there for a few hours that day, so I ran to the store and got a Nutribullet, which is really good for pureeing food, and some cans of soup, stew, and other things that could be pureed. 

So, I was struggling to change his briefs and chux by myself, but I was managing. A couple of times, he was able to help by lifting his bottom off the bed, but, most of the time, he didn't understand what I wanted. I was spoon feeding him his pureed foods, pudding, and applesauce. He was drinking well too. That was Saturday. 

Sunday morning, the nurse came back and a bath aide came out. They cleaned him up. He ate a little breakfast, but didn't seem to have much of an appetite. I had gotten him about 12 ounces of juice to drink, but he had only drunk half of it by lunchtime. At lunch, he only ate a couple of tiny bites of applesauce and had a couple of sips of water. He never ate or drank again. That was when I realized that he might have started dying. 

Monday was horrible. He became so agitated, the nurse instructed me to increase the frequency of his meds. That afternoon, his caregiver and I took turns keeping him from trying to get out of bed. The nurse stopped by again and called it "terminal agitation". That was a new term for me. I again recruited church friends to stay with me that night. Fortunately, he calmed down that evening. 

Tuesday morning, the final friend to stay with us left at 5:00am. I decided to take a shower at 5:15. When I got out of the shower, I heard this horrible, loud noise. At first, I thought that the motor on his oxygen concentrator was about to explode. My next thought was that there must be a roaring lion in the bedroom. Nope. It was hubby. He had started his death rattle. I had never heard that sound before even though I was with both of my parents when they died. It was disconcerting, to say the least. There was all of this foamy mucus pouring out of his mouth and nose. I elevated the head of his bed and tried to clean him up as best I could. I don't know how they don't suffocate on their own secretions. When the hospice nurse showed up, she nearly had a heart attack. In the time it had taken me to answer the door, he got very loud again. A lot more fluids were pouring out of his mouth and nose. She gave him some medication to dry up the secretions and cleaned him up. She used a towel, a sheet, and a blanket to wipe his face. It was that bad. The caregiver was there that day. We took turns sitting by him and wiping his nose which was still draining a lot of fluid. That slowed down a lot by 2:00pm. 

I figured that he wouldn't survive the day. I didn't ask anyone to come over. I wanted to be alone with him when the end came. At about 4:50, I noticed that his breathing had changed, gotten weaker. I ran to the bathroom because I couldn't hold my bladder anymore. When I got back, I felt for a pulse, but couldn't feel one. He kept breathing for a few more minutes and then stopped. I called hospice again and the nurse arrived 45 minutes later. I guess that will be his official time of death. I don't have the death certificate yet. 

Okay, very long story, but I had to get it all down. I'm actually doing okay, I think. I've known from the first that this would be the outcome. It's been 8 1/2 years since he became symptomatic and almost exactly 8 years since I realized it. His supervisor from work first noticed changes in him, but she couldn't tell me due to privacy concerns. That still pisses me off, by the way.

More tomorrow. I'm really tired now.


Posted: Friday, February 28, 2020 9:54 AM
Joined: 4/1/2014
Posts: 5199

Elaine, I am so sorry your dear husband is gone and he and you both had to go through this awful experience, but I could feel the love and strength you have and I'm sure your husband was comforted by it.

 I commend you for going the distance and keeping your dear husband at home so he could live and die in his own home. There is no greater gift to give a loved one or even a friend, than the gift of ourselves and our time. I'm glad you had the help of your church friends. You and your husband must be well loved by them as well.

 May you be comforted by the knowledge that you will be together with your DH again in the afterlife and until then, may your healing be complete and joy return to your life. Take care and God Bless you and your dear husband. 

Posted: Friday, February 28, 2020 8:04 PM
Joined: 6/20/2016
Posts: 2760

Elaine, I am so sorry for your loss.  I think the way it went was the way it was supposed to go, as hard as it was.  When you had said at first they were going to do surgery, I thought certainly he wouldn't have made it through, and I was glad they decided not to, but I also kind of knew that the seizure meant that his brain was severely affected by the disease and this was probably as far as his body was going to take him.

It may take some time before the more pleasant memories will take over, but they will.
Posted: Friday, February 28, 2020 11:21 PM
Joined: 7/30/2013
Posts: 6037

I think that everyone at the hospital knew that he was going home to die. He had hip replacement surgery in 2014. At that time, the social worker in charge of his discharge was very concerned about his placement after he was released. At first, she talked about rehab. Then, after talking to me, she decided that it was safe to release him to home with therapists and visiting nurses coming to the home. This time, however, no one appeared to be the least bit concerned about sending him home with me as his sole caregiver and being completely unable to lift him or even change his briefs without assistance. It turned out to not be much of a problem. I did have to change him by myself a handful of times. But that was it. 

When he was first accepted into hospice in September, I thought that it was premature. Surely he wouldn't die before March 6, would he? He did, though. I'm still surprised at how accurate his PCP's prognostication was. Does he have a crystal ball or something? And then I actually felt the Lord telling me that he would die at about this time. My brain kept telling me that he would live at least another year or year and a half. I guess I just didn't want to believe it, as much as I wanted his suffering to end. 

Posted: Wednesday, March 11, 2020 3:11 PM
Joined: 4/1/2014
Posts: 5199

How are you my friend? I hope the brightening days are helping you to feel more hope and joy.  Thinking of you and others as we move forward and live our lives as our loved ones would want us to. Take good care!
Posted: Wednesday, March 11, 2020 5:10 PM
Joined: 7/30/2013
Posts: 6037

I'm doing remarkably okay. The paperwork is driving me nuts! I have had no income this month, but bills still have to be paid. I'm living on credit cards until I get his life insurance, the pension that I will inherit from hubby, and my Social Security survivor's benefits. Since I am a widow at least age 60 (I'm 61) of a spouse who was on disability, I will qualify for some portion of his benefits, between 71.5-99% of what he received. I don't know how much yet, my appointment with them isn't until April 27. This is the federal government going at light speed. And then the office of the orthopedic surgeon who tried to help hubby in the hospital sent him a bill. Blue Cross/Blue Shield denied the claim saying that hubby was on hospice at the time. He was on hospice that morning and in the hospital that afternoon. I don't know how that's supposed to work. I faxed the orthopedic surgeon's office a copy of his death certificate. I'll let them fight it out with the insurance company. I see my lawyer later this month to help me figure things out.
Posted: Wednesday, March 11, 2020 8:22 PM
Joined: 8/26/2015
Posts: 108


I’m sorry you are having to wait until April to get to the SS office.   I didn’t make an appointment, just went down and waited.   It did take the whole afternoon but it was done and I will receive my survivor benefits starting in April.   My DH passed on March 2nd.   I don’t know if you live close to the SS office but for me it was faster getting it going.

Posted: Wednesday, March 11, 2020 10:08 PM
Joined: 6/21/2019
Posts: 987


Did you ask your local Social Security Office if they have Walk-In in addition to appointments?

When my wife died, I called and was told I could make an appointment or try to be seen as a walk in.  I went to the local office before they opened, got in line and took a number.

Those of us with numbers waited longer than those with appointments but I was seen after several hours and applied for the Lump Sum Death Payment.

If you didn't ask, you could call and find out if you can apply as a Walk-In. It could be a matter of waiting several hours versus six weeks.


Posted: Thursday, March 12, 2020 6:19 AM
Joined: 7/30/2013
Posts: 6037

demiscared wrote:


I’m sorry you are having to wait until April to get to the SS office.   I didn’t make an appointment, just went down and waited.   It did take the whole afternoon but it was done and I will receive my survivor benefits starting in April.   My DH passed on March 2nd.   I don’t know if you live close to the SS office but for me it was faster getting it going.

I went to two different Social Security offices - one in a neighboring county. That one told me that I wasn't in their jurisdiction, I had to go to the office in my city. I did that the next day. That time, I was told that they didn't have the staff available to take applications such as mine on a walk-in basis. I even called the Social Security toll free number back and they confirmed that local offices don't have to take applications as walk-ins if they're understaffed. So, that's it. I have to wait until April. I don't know what else to do. They voiced sympathy over my loss, but seemed unconcerned that I have no income at present. 

Katy sue
Posted: Friday, March 13, 2020 10:17 AM
Joined: 9/24/2016
Posts: 470

Hi Elainechem...your situation mirrors my own a bit. I also have little income at the moment. These things to do after death take time, and unfortunately that is critical for some people. I am fortunate that I already deposited one life insurance policy and am waiting on a second. I was drawing my spousal benefit from his disability for the last year of his life. He passed Feb 14. So I was told by SS that the amount of my widow benefit would just be automatic figured and I did not have to go into the office to apply. I am 63 so would get about 82% of his disability check(combination of my retirement and his). The sent me a letter earlier this week stating they are working on it but need more info. I had already lined myself up for a phone appt with a rep so I told him about the letter. He said there was nothing anyone could do but wait because it was already in the system.  He did say he would include a reference for a “dire need” to them. I still have no idea when I will get anything, but it will be retroactive. 

All of this funeral planning and wrapping up the financial part of it is draining. Everyone leaves you, assuming you’re ok after the funeral.  And then the death hits you like a train in the dark. I picked up the urn yesterday and have not been the same since. It’s a defining moment in your life when you hold the ashes of your spouse next to your heart on a chilly day in March. 

Posted: Friday, March 13, 2020 1:44 PM
Joined: 11/22/2019
Posts: 402

I have a lot of empathy for those who depend on income from the SS or pensions of our people with dementia.  Government or bureaucracies move slowly.

I am so sorry that people have pretty much wandered off since the funeral, Elainechem.

I never know how much of that is from people thinking we need a lot of private time to grieve.  It would help if they asked.

You have my deepest sympathy. 

Posted: Sunday, March 15, 2020 4:16 PM
Joined: 7/10/2017
Posts: 659

elainechem wrote:
I'm doing remarkably okay. The paperwork is driving me nuts!

I'll certainly agree.  I've been telling my friends, "Don't let your spouse die.  The paperwork is a nightmare."  Things happen that you can't even dream up.  I had to get a new Verizon account before I could file my income taxes! Figure that one out.  Couldn't renew my passport because I was locked out of my safe deposit box. And on and on... 

My condolences, both on your loss and the ensuing nightmare of paperwork.