Am I going crazy?
My husband, aged 78 and diagnosed 6 years ago, has suddenly taken a severe turn for the worse. He has been in home Hospice care for the last 2 months and now is, as the nurses say, "taking that final turn". He is incontinent, has nighttime agitation controlled with drugs, and sleeps almost all day. Within the last 5 days he has refused to eat, but he will take water or milk. I've asked the nurses if he should be in the hospital but they say no, he should remain at home. They tell me he has several days, maybe a week to live. I am terrified of finding him dead, to the degree that I am afraid that I will go off the deep end emotionally. We have been married 38 years and while it was a very difficult marriage, I consider him the love of my life. We have absolutely no one to help me. His daughter is a monster who, because last year when he was cognizant he called her out on her infidelities to her husband, she ended the relationship. I just emailed her that the end was near, and she sent back an email trashing him as a father. The few friends we had have all died or faded away over the years. I have no family so am totally alone except for my tiny dog who is the center of my world. Have any of you been in this position? I am trying to hold it together but when that moment comes I am so afraid I will collapse. Thanks for any help.
Comments
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I am so very sorry that you feel so alone during this tragic time. My prayers are with you and your husband. I know you will find comfort from everyone here. ❤️
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I'm sorry his daughter didn't try to turn a new leaf. It would have been nice if she were showing a little empathy for both of you.
If you are a church goer, is there anybody there who could show a little caring, and give you a shoulder to cry on? The time comes when we could all use that.
I wish I had something that could make you feel better. Maybe someone else has something.
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Glad you could at least express your fears here. Have you told the hospice folks how you’re feeling? They may be able to help in some way. Please do keep us posted. You’re not going crazy. You’re scared and sad.
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All I can offer is that in my own life experiences , it is best I accept that I have no control over some things. You cannot control the behavior of his daughter. You cannot control the behavior of those you feel have faded away.
What you can control is that you are here on this forum and even strangers care about you and your LO. You can keep reaching out here and know you are not truly alone. There is understanding and compassion here. Your sweet dog is here for you too—providing purpose and comfort.
You CAN hold it together because you HAVE done so throughout this most difficult of journeys. You have proven your strength through your love and care of your DH.
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Thank you for your words. From birth I have endured much suffering. I have fought to overcome it all with a full and exciting life, traveled the world, had success in the Arts, but always with the undercurrent of suffering. There are certain abuses when we are young, especially if they go on for years and years, that are never overcome no matter how much therapy. And now I am facing the unimaginable. I have always fought to conquer whatever life presented (cancer at age 16, father's suicide, mother's deep abuse, inability to have children, etc.), but I cannot see my way past my husband's impending death because it will happen here in front of me. I am filled with terror. Thank you for extending your hand.
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Yes, I told the Hospice nurse and she said that my husband had to stay here at home. I want to be with him, but I am terrified of what's ahead. Thank you for responding.
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Thank you. My stepdaughter has proven to be a truly cruel individual, and the fact that she portrays herself publicly as a Born Again makes it all the more depressing. No, I am not a church goer. I have always had a relationship with God, but not in the public sphere. Fortunately, the Hospice nurses are very kind and caring individuals who have gone above the call of duty to help us. It's just that I am eaten up with fear. I appreciate your words. Thank you again.
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Has the chaplain from hospice come to visit with you? He/she could be a great help for you!
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Yes, the Chaplain came about 3 weeks ago but my husband did not like him at all. I know this seems ungrateful, but I also had a hard time with his approach. There was an impersonal feeling from him that made me feel more alone than ever. It was not a comfortable match. But the Hospice nurses are extraordinarily caring and I will call them if things get worse as the night progresses. Thank you for your suggestion, though.
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Do call them. When my father went into the last several hours, the hospice nurse came and stayed with us.
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Are there hospice nurses that can spend more time with you now or if not, do they have suggestions for caregivers that you might be able to hire for some additional hours to help with caring for him? Does hospice have more than on chaplain on staff? Sometimes a different personality with a kinder approach can make a difference. You always have the people here on this forum who understand and will do whatever we can. But it sounds like you need more in person support right now. Sending virtual hugs to you.
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I am truly sorry for what is happening. Please consider contacting the Alzheimer's Organization for guidance. There is a phone number on the site. You definitely need to be talking to someone. Has the hospice nurse given you any guidance as to what to expect as the dying process advances? It is important to understand that if kept with the right meds, your loved one will pass peacefully and without pain. You don't want to keep your loved one around to struggle with this disease. Try reversing the situation - would you want to remain in his state? Have you contacted your doctor for some meds to help you? Be aware that when we are in such a state, we are reacting with our emotions which can cause you to create stories that aren't going to happen and we make things more stressful. Stay in the present and deal with one tihing at a time. You are going to make it. You are going to get through this. Please keep us posted. I am sending a virtual hug to you with hopes that you will find peace.
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It sounds like you don't want him to die at home. When someone is on hospice care, they don't go to the hospital. Hospital is more for "curing."
However, you can terminate hospice and send him to the hospital. Or - some hospices have hospice houses. They are places where patients are cared for by hospice. Many are kind of a home-like setting. Or - you could have him placed in a nursing home for the final days. Hospice + nursing home together does work; my mom was in a nursing home and as she worsened began receiving hospice services there.
I'm sorry for what you are facing and I said a prayer for you.
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Sometimes the fear of the unknown, is worse than the actuality. When my FIL was on hospice, my SIL was like you, terrified to find him or be alone when he passed. When hospice told her it would only be days til his passing, she hired home help for the last week. It was what she needed. I’m sorry you are going through this alone, that adds so much more stress on you.
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Do either of you enjoy music? If I'm alone, I will find music to listen to. There are channels available on TVs that play music. I have Alexa & I will ask for whatever I'm in the mood for. Chamber music, cellos, brass, piano, harp, Bach...Some of the TV channels have lovely scenery to look at as well. If you like to read, I would definitely read!
You can read soundlessly, or aloud. Read something new or re-read a favorite. You can read to yourself, your LO, even your dog. There are many free ebooks available to borrow or own.
If you like baking, then make your favorite. You will have the pleasure of creating something. You can fill your house with wonderful scents. You can give cookies away to the Nurses to say Thank You. Try something new or a favorite. (I'm a terrible cook. I have decided to give myself points for trying.) Find a recipe for Doggie Treats.
Those are some things I can & would do. I might even find a jigsaw puzzle. Meditation can be calming. My best would be prayer. For someone else. For something you care about.
We will pray for you and your family.
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I feel your pain and fear and wish there was someone to comfort you through this. Even if you are scared please see it through to the end. I am afraid you will always regret not being with your loved one no matter how hard it will be. I know you are strong from the story you shared. We are with you. Be strong.
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I am wondering if Hospice can be of help to you, since you are clearly alone and terrified of what is to come. (And who wouldn’t be?) When DH was transitioning, the hospice nurse (and MC nurse) were very clear about what was happening and how the process would progress. Although DH was surrounded by family and his passing was peaceful, it was comforting to hear those gentle voices whisper us through the final hours: “He will settle; his breathing will slow to practically nothing, he can hear you; hold him, soothe him.” I will be forever grateful for their presence; I remember his death as a gentle passage, not at all terrifying or tragic.
You can do this, you will do this, but having someone by your side to offer support and strength will make all the difference in the world. I am praying for you and DH and for final peace. 🙏🏻🙏🏻
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Is there another hospice agency in your area? They do have slight differences and with my previous LO, there was a lovely small in-patient facility, as well as a larger one, or in-home hospice care.
If I were you, I would try the members' advice above to have a hospice nurse stay with you longer, and also see if it is possible to move her soon not to "hospital" but to in-patient hospice. You can do this if you have to, but you should not "have" to with the level of distress it is already triggering in you. I wish you peace.
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Thank you for your kind words. There has been a change in the course of events that has given me an emotional reprieve for now. The Hospice nurse who told me my husband had "taken the turn" was an on-call nurse, not my husband's regular nurse. She made this summation on the phone without seeing him. Yesterday his regular nurse came and I explained to him what the other nurse said. He was highly annoyed by it, saying "no", my husband was not in that condition. The nurse spent an hour here talking to my husband, getting him to drink an Ensure and went over and over with him that he "needed to accept the mission", meaning he would eat what he told him to eat for the rest of the day. They were both career military men, so this "order" had special meaning to my husband. The nurse backed off some of my husband's meds which were making him loopy and today the difference is so noticeable. This nurse feels my husband is not in immediate range of dying, and has offered me all kinds of help, which I will take. Thank you again.
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Thank you for the suggestions, all of which I will pursue. There is another chaplain that visited my husband at the Hospice care facility when he was there for a week, and my husband loved him. I have his number and will call him. I am pasting an update in response to you, which I will also share with others, because it has shown me there are so many factors in all of this. Thank you again:
There has been a change in the course of events that has given me an emotional reprieve for now. The Hospice nurse who told me my husband had "taken the turn" was an on-call nurse, not my husband's regular nurse. She made this summation on the phone without seeing him. Yesterday his regular nurse came and I explained to him what the other nurse said. He was highly annoyed by it, saying "no", my husband was not in that condition. The nurse spent an hour here talking to my husband, getting him to drink an Ensure and went over and over with him that he "needed to accept the mission", meaning he would eat what he told him to eat for the rest of the day. They were both career military men, so this "order" had special meaning to my husband. The nurse backed off some of my husband's meds which were making him loopy and today the difference is so noticeable. This nurse feels my husband is not in immediate range of dying, and has offered me all kinds of help, which I will take. Thank you again.
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Yes, I am staying by my husband's side, no matter what. Thank you for your concern and kindness. I am pasting to all an update that I think has a lesson for us all.
There has been a change in the course of events that has given me an emotional reprieve for now. The Hospice nurse who told me my husband had "taken the turn" was an on-call nurse, not my husband's regular nurse. She made this summation on the phone without seeing him. Yesterday his regular nurse came and I explained to him what the other nurse said. He was highly annoyed by it, saying "no", my husband was not in that condition. The nurse spent an hour here talking to my husband, getting him to drink an Ensure and went over and over with him that he "needed to accept the mission", meaning he would eat what he told him to eat for the rest of the day. They were both career military men, so this "order" had special meaning to my husband. The nurse backed off some of my husband's meds which were making him loopy and today the difference is so noticeable. This nurse feels my husband is not in immediate range of dying, and has offered me all kinds of help, which I will take. Thank you again.
2
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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