Is anyone else caring for their dying spouse?

UPDATE on my nephew, Jack Andraka. He is currently in his sophomore university at Stanford University. He has many ideas. His latest one in Nano robots, which can go into a person's body to detect for cancers. Nano robots are nothing that just came out today, 4/7/17.
However, he can and has invented many super things, but the stumbling block is the EXORBITANT clinical trials needed before his genius ideas can be marketed.

I can so relate. I cared for my spouse who had Parkenson's and 3 different dementia for about 15 years. Back then this forum didn't exist it sure would 've helped. I think caring for a dying spouse is one of the hardest walks ever. It ripped my heart out and for me as he disappeared mentally and physically before me it was greiving anew every single day. 42 years that is really rough. Keep seeing your therapist. Reach out and see if there are any Life Coaches for Caregivers in your area who were former caregivers themselves because unless you've walked it you don't get it. I suspect it is his fear and his worry. It could be aggravated by the meds. But you are right!!! You are the one being left behind. It hurts. He needs to understand how you are feeling. My hubby was extremely abusive. Because of this website I have come to undetstand that my hubby's illnesses were behavioral variant. He literally was not who he was and the executive functions of mood and behavior and inhibitions were wiped out. To say his behavior was animalistic might be an understatement but it wasn't him. It was his illness. It was still wrong. He just didn't know and could not understand. Don't argue with him. When he starts have a plan, and tell him if he can understand that you love him. You are going thru this with him. And if he is abusive let him know you have something to do and do it without hesitation or reservation. If he is able to comprehend. Have a couple of hours to do something for you. Have lunch with friends. Go to church. That held me when I couldn't hold on. Research for support groups locally or online. That is very helpful. Taking care of a dying spouse is so very very hard. If you can afford it get someone to come in and help. The choice of people I had to select from sucked totally. Ask around your church or friends of your hubby or the kids to come spend sometime with him. But don't get your hopes up nobody would help me. The world changed. Reach out to other caregivers in your area and build a network of like we did with our kids for a Mommie's Morning Out. I found myself in love with the memory of who we were. Over a year now and I am still in love with the memory. God Bless You Dear One and your hubby. Give me a shout back if you like. If you have tried all if these things with no resolve please get back in touch with me. In my prayers...

Jack Andraka's test is ONLY test to detect for pan can.

Coloresue: Indeed I am proud of my nephew. He has many balls into his juggling act of medical science. The perfect college for brilliant students like him is indeed Stanford. He is involved in STEM, ISEF and TED to name a few. Catch him on the internet.

Coloresue: In regard to genetics, I was simply talking about family risk factors and not genetic testing markers. Currently, once a person is diagnosed with pan can, it has already metastasized.

Llamalover, the story about the work your nephew has done is fantastic! How fortunate we all are to have this test coming! I'm sure you're very proud of him, and rightly so. A good ending for all of us.

Llamalover, I guess you know that when a person gets pancreatic cancer at or over the age of 50 as my husband did, there is rarely a genetic connection per modern medicine at this time. My husband's testing was done anyway without us being told this in advance, or we would have cancelled it. He was found to have no genetic markers for pancreatic cancer. No surprise there.

The only definitive test for pan. cancer would be a CAT scan with radioactive dye and no Dr. would want to order this based on an unlikely chance that someone might have the cancer. No insurance company would foot the bill, either. Your nephew's test will be a welcome addition to the tools in the medical world's arsenal.

Coloresue: Yes, I am totally aware of the genetic factors associated with pancreatic cancer. For myself, I am on the atypical five year protocol for a colonoscopy as I had one aunt who deceased from pancreatic and one who deceased from colon cancer. That said, I am not as at risk than if it were my parents who had those diseases. Nonetheless, I am proactive about my health. Through no fault of his own, my nephew can only push the big pharmaceuticals so much and his simple test is about 10 yrs from being marketed. I still urge you to research his story-Jack Andraka.

Llamalover, thank you again. As you may know, brothers and sons of someone with pancreatic cancer have a 3x greater chance of getting the cancer than someone with no such relatives with the cancer. My husband has 2 brothers and 3 sons. So thank you very much and I hope this test is around soon.

Coloresue: You're welcome! He's pushing pharmaceutical companies to hurry along the patent process. Google "Just Jack" or "Jack Andraka.com.

Llamalover, thank you.

My nephew, Jack Andraka who is a child prodigy, invented the test to detect for pancreatic cancer when he was 15. His product takes time to market. I'm sorry...three of my relatives deceased from pan can.

Hi ArleneH.,
Yes, you are right, I just have to keep working at it.

Yes, dragonbait, I have a locked door. I understand. You are wise in your advice.

Hi Colorsue, thanks for your message. Remember you are not abandoning him, but the behaviour he exhibits. To a certain extent, it is not his fault. You are the closest person to him. As we say where I work, 'water off a ducks back', for our own sanity. Arlene Hutcheon

Coloresue, as one of my teachers said, "Reasons are only reasons." A reason is not a cause of a behavior. It sounds as if you have taken some steps to ensure your safety. I hope you have a lock on your bedroom door. Verbal abuse can escalate.

Hi ArleneHutcheon,
Very good advice. I've done this before, but I tend to get snagged by wanting to finish what I'm doing or he hits a hot button issue and I respond back...and you see that I don't always do what you recommend.

Often I don't want to leave because I'm the one being punished by losing doing what I'm doing and he wins by "sending me away" out of the room. He's devious that way. So I've left the room and I was doing something there that I now have lost the privilege of doing. And he stays and gets to do what he wants without me there to defer to. If I'm in the middle of a project it's often hard to leave it and just go...I'm the one being punished. That's often the case.

I do get your point. I have become much stronger with this problem. I've had to distance myself so that his insults don't hurt as much because he's very cagey about trying to snag guilt and manipulate me. I think he could do it in his sleep because it's so ingrained. I can't let him control me. Thank you for your advice.

When he takes his anger out on you, turn around and walk away. It sounds very easy for me to say, but you will take the winds out of his sails, so to speak. Don't reply to his anger, just go. I know he is your spouse, but try to grow a thick skin and don't take what he says personally. You are the closest person to him, and unfortunately, you get the brunt of his anger. Be strong, not for your husband but for yourself. You need it. I hope this helps. Arlene Hutcheon

Oh, deadonarrival, I'm so sad about the mess you were put through! How that stinks!! I've been carefully on the watch each step of the way that the right legal steps happen and fortunately I didn't have to fight my husband on any of it. I'm also blessed that there was no outsider trying to move in on my place as spouse and next of kin to my husband. I had to move him out of the primary position in my will and health surrogate documents when he had dementia so completely, then years later put him back in when he improved so much. That will change if he slips into dementia again, but there are no signs at all.

Blessings to you and strength to weather the bad breaks you've been given. My heart goes out to you.

Hi Jinx4740,
You've made some good points.
In my reply to dragonbait (sorry if you've read this a few times already) I wrote 1 reason my husband may be carrying around anger at me. Yes, he has retained some dementia. I know I can't reason with dementia-origin thinking. When my husband sets himself against me, he usually can't be reasoned with at all. Was he always angry? No, not for many years. But his anger is cumulative. He's explained his day this way: He wakes up at 100% ok. Something happens and he's down to 95%. Something else happens(presumably negative in this example) and he's down maybe 91%. And so the day depletes downward. He has no resource to increase in his attitude. To recharge. My observation is that this is true for his lifetime also. He lets the anger accumulate over the years and it just builds and builds with an occasional release in a huge explosion of anger: Intermittent Explosive Personality Disorder.

I like your idea of my being compassionate and being aware of possible pain that he may have, but only sometimes is he open to my care and concerns for his well-being. Sometimes things flow smoothly and sometimes he just rejects anything I try to do or say. I like all of your good ideas and observations, and I wish my husband would cooperate! Thank you for writing to me!



not notice that they are in pain, but they notice that they aren't happy!
it's hard to balance being a "good person" and protecting yourself. Good luck!

Dear JoAnn29,
I'm sorry to hear about the anger you had to bear as a child. It was wrong and I wish it had never happened to you. As far as talking to my husband, you are being logical and I totally agree with you. But he isn't logical at all...he's emotional and doesn't function logically. We've had many discussions about his anger but he doesn't change. He, too, was brought up with the inappropriate use of anger as a method of control and abuse. That's why I have to remove myself from his presence when he gets illogical and abusive. He can't control himself...can't even identify the problem or place where he went wrong. He has Intermittent Explosive Personality Disorder on top of that. Then he REALLY can't control his anger. You have good common sense about this and I very much wish common sense worked with my husband all of the time.

OOops, I think I answered the wrong person...sorry everyone!

Hey Lassie! I know what you mean and also feel that way when my father agresses me verbally or physically, but when I see him at death´s door I feel compassion & want to help him...just last night he was in a deep sleep due to dehydration (he refused food & fluids all day long) & after I poured 1 cup of real juice down his mouth (he didn´t even react to my presence) he started to wake up and regain his natural colour...he hadn´s voided for almost 24 hours!

Dear Lassie,
I hope that's not what would really happen. What a gloomy picture of the future that would be! I wish you a much better future and pray that all will go smoothly for you and your fears will have been for nothing.

Dear ADCaregivers,
Thank you for taking the time to give such complete advice. For me, the need for all that came years ago when my husband was diagnosed with early onset dementia so I have all my ducks in a row by this point. The curious thing is that he proceeded to recover from this dementia in a very significant way 2 years ago and no one can account for this. He still has some remnants of it, but he's recovered a great deal of his abilities that were gone for 6 years.
Anyway, all paperwork is in place except final arrangements and finishing up with personal items which we will address fairly soon. I only recently allowed John to be my health surrogate or a say in my POA because I wasn't confident he was recovered from his dementia. But it's clear he really has by now. We have separate banks and accounts though we share access to them. We each have separate investments and so forth. I always carry cab money but haven't used it in about 3-4 years.

When a loved one or friend of mine has a problem, I research it as thoroughly as I think it needs to be. So I've covered a lot of ground on this cancer. And no matter what has happened before, each person is an individual and doesn't necessarily conform to the statistics. As far as being abusive, that came with the dementia. His abusiveness increased from sometimes to most of the time. I believe I wrote most of the story in my reply to dragonbait.

I think your advice is good, but I happened to have followed it already. I appreciate the thoughtful ideas. I know how important they are.

Sweetie been there done that. OMG it is a hard hard road. I literally ended up at the hospital Dead on Arrival. I know exactly what you are going through. There are some many of us that know. Money might be a problem. That is always fun and if you do get someone to come in, there is always something wrong with them too. I forgot how to live! I had a pin stroke and collasped from exhaustation and when I was in ICU his cousin showed up and he moved out with her and I was left with the bills and terrible health issues from 10 years of hard hard work, physical emotional and mental abuse. Left me to fend on my own and not a dollar in support. I went to go pick up his death certificate today and his cousin was the informant and told the funeral director that we were divorced. Just to avoid my being an heir to his estate, life insurance, property and my widow's benefits to social security. So now it will cost me 3000.00 for an estate attorney and a superior court order reflecting that we were in fact married at the time of his death. No one even called me when he died or for the service. I found out by a query on the internet. And my husband was 200 lbs plus and with Parkensons, Lewy Body Dementia Frontal Temporal Dementia and Vascular Dementia sent me to the hospital several times and the ER staff just said OH, HE'S SICK. Knowing what I know today and the dimension of hell I lived through put him in a facility before you die. The percentage of caregivers who die before their charges are staggering. Yes, he is sick and it is horrible. It will never get better, if it goes like mine did. I felt like and the doctor told me that my hubby blamed me that he was sick and I wasnt. I asked him once, What if it had been me that was sick? Could you have cared for me? He said I would've. You would have been on your own or in a home, but I wouldn't have paid for it. And that is 90% of men when the women get sick. It sucks, but you don't have to die because he is. Excessive caregiving is self neglect. Take care of you first or you will be unable to take care of yourself and baby stress KILLS. Get help. You are not and can not be a Force of One. God Love you.

Dear Emmy67,
I know just what you mean when you say it's hard not to be hurt even when you know the harsh words are the disease speaking and not your husband. I know quetiapine is used in a lot of circumstances because of it's sleep inducing side effects. I hope it's a good help to both you and your husband.Thank you for your blessings and I, too, am glad you have good support for yourself. Both you and your husband are in my thoughts and prayers. Blessings to you both.

Does he have dementia at all? No sense in trying to change his behavior if he does. Do read that book "Elder Rage." I sort of didn't like it because she was kinda "mean" to her dad, but he was a real difficult person. She took hold and did what she had to do.

Was he always angry or is this new? If you can dig up some compassion, that might help. When he says something horrible, say something like, "Oh, honey, I'm sorry you're feeling so bad. You never wanted things to end up like this, did you?" Maybe more important, can you treat his physical pain? My father never cried out from the pain, but I think it was worse than I realized. When someone is in constant, low to moderate pain, they may not notice that they are in pain, but they notice that they aren't happy!

it's hard to balance being a "good person" and protecting yourself. Good luck!

Hi ferris1,
I didn't address the topic of my staying in the home: I believe my husband is confident I'm committed to staying with him until the end. If you read the story in dragonbait's response that helps you, plus my husband is feeling safe enough to insult me and see that I'm not going anywhere, nor am I threatening to leave. I'm making a lot of changes to our home that are personal, decorating, fun changes that indicate I'm staying. When we talk, the subject of my staying is always done in a manner that assures him I am staying. I get no message of insecurity from him.

Hi ferris1,
If you look at my answer to dragonbait, you will see a very likely reason why my husband may be mad at me. Another is that he likes to be in control of everything. He always wants to be right, no matter the cost to the relationship or conversation. This is only within the family living in the home. I can see the reasons you gave for arguments happening, but for my husband I would guess most likely is the bedroom/bathroom issue. He picks arguments over the most insignificant of words which does indeed make it easier to cope with him dying, but I wonder if it really helps all that much in the end. The frustration or anger of an argument seems fairly brief compared to the period of dying and mourning and adjusting to living a different life.