Is anyone else caring for their dying spouse?
My husband will probably die from pancreatic cancer within a year. He's already survived for more than 3.5 years which is quite long for this cancer. Now it's recurred and his chances aren't so good. It's true we never know, but this time feels very different. My gut tells me he won't beat it this time.
He takes his anger out on me which makes me angry at him. This may make it easier for me to let him go, but it's wrong for him to be verbally abusive and I resent it. I deserve to be treated better than this. I don't want to abandon him in these last stages of sickness because I've decided to stick to my marriage vows long before now.
I guess I'll have to walk out of the room or wherever I am more often and leave him wherever he is when he gets abusive. It's just harder when he's not well. I'll need to carry taxi money just in case as I have for years. What a story he'll tell if I have to leave him somewhere public!
Sometimes I feel like I'm falling and there's nothing below to catch me. A very frightening feeling. That's the feeling of the unknown...for me the unknown is having my spouse of 42 years die. Coping with the changes, with life after the changes. There will be some good freedoms and some bad times of missing the good things. I'll lean heavily on the Lord and others. It's a very good thing I already have an excellent counselor. I'm going to need her. I'm going to need a lot of people in so many ways. How about you?
My God bless you in this very trying time of your life.
Bob
Hard to ignore hurtful,even abusive talk. At this time, however, it is his/her anger that is being focused on you. Try to step back and let it be.This is only a stage in the dying process. Hopefully,you can forgive the patient; and forgive yourself for being upset,angry etc. We all tend to take things so personally and hurt ourselves. We humans are a funny bunch, aren't we? !!!
Now that your husband has reached the abusive stage, you need a short term and long term game plan for yourself. You need to squirrel away as much money for yourself as possible. If you don't have a separate checking account, then go to your bank and get one. If you get social security, then call up the SSA and divert your check into your new account. Add money to your account at every chance possible, even if it is $5 or $10. Also avoid any big expenditures if possible. Buy only what you truly need.
Does your husband have a current will? If so, find out it's provisions. Make sure your house is left to you along with funds to maintain it
Your taxi money is a wonderful strategy. But do you have safe place to go for an extended period if things became really bad with your husband? If not try to find one. Knowing you can escape to a safe place will help you cope.
You might to consult an attorney about a PoA or Power of Attorney in case your husband becomes unable to make decisions for himself. A POA is a powerful legal tool that allows the holder to pay bills and make other decisions. Most attorneys will give you a free hour long session.
Good luck and keep us posted. You definitely need someone who listens.
To 126Cher:
Don't worry, I'll keep in touch if you want me to. It sounds like we have similar diagnoses with our husbands. Mine went through chemo, radiation and had the Whipple surgery which bought him a total of 3.5 extra years. He was about 63 when he was diagnosed and the cancer had just spread to a lymph node and a large vein. It recurred about 6-7 weeks ago but there have been complications which I won't go into and he hasn't been able to be treated yet for the cancer. He comes from very healthy, strong genetic family physical history. Not everyone could have done what he has been able to.
How are you holding up? It sounds like you could use some support.
Thank you for the tip on the book. I'll get it and read it. I love to check out resources like books because I can learn so much that way. I know I'm not alone intellectually, but the book will probably help me reinforce that feeling if I go ahead and read it. Thanks again.
I'm so sorry your wife has had this health setback and you both have this tough communication situation. What a challenge! You seem to have a very good attitude about it all and I know it can't be easy. I pray the Lord continues to bless the both of you as you work out the difficulties of your situation day by day and I thank you for your blessings because I do need them.
You have a lot of wisdom in your reply to me.
There's a reason I haven't mentioned for my husband's anger that he will stay angry at me about. About 8 years ago he started with early onset dementia. It lasted 6 years and no one can tell me how or why he has recovered significantly from it. During that time, he became very verbally, mentally and emotionally abusive. Very passive aggressive. I had to move out of our home to save my sanity. We tried counseling, and many other options for help. Nothing helped much and when he was diagnosed with dementia I understood why nothing helped. I accepted that he was ill and I had vowed to stay with him through illness or good health. I came home but insisted I had to have the bedroom and master bath to myself as a safe place. He agreed. I still have the master bed & bath and he resents it. I still have need of a safe place and won't give it up.
So there's resentment in my husband over this. He has a hard time understanding why certain things were done during this period of time when he wasn't functioning normally. Most of it he can't recall at all, but some effects he does question. He still has some minor dementia symptoms but they are greatly reduced from a few years ago.
I love your lighthearted approach! My husband's words are like carefully sharpened darts aimed to cause the most pain, and they do. But I do work at letting go of the hurt and forgiving him asap. If I get angry, I work at forgiving both of us, and think about how I can avoid anger the next time. It's me getting angry back at him that bugs me the most. I wish I didn't let it get to me. Sooo..I'm a work in progress.
I wish I could take away all of your problems and stress! Things sound so tough for you! I'll add you to my prayers that there's some relief coming for you very quickly. Is there any other helpful program that you can utilize? It sounds like you could possibly use a few more hours of time off. Is there anyone who can come and give you a break more than just the daycare? You can't afford to burn out, and you need to take care of YOU. I know this is easy for me to say and hard for you to do, but I'm hoping and praying that by mentioning it you might feel okay about asking someone you've been hesitating to ask. Or looking into a program you've been thinking about that's after the daycare. I hope there IS something more you can find to give you a break. You sound like you really need it. Please take care.
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.
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.
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!
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.
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.
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.
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.
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!
Blessings to you and strength to weather the bad breaks you've been given. My heart goes out to you.