1. < Caregivers: Dementia

I can’t cope while my husband is dying

Posted by shirleymac @shirleymac, Nov 5, 2023

I started a post and it disappeared. After caring for my husband for 12 years. He had a stroke (not the first) Oct 5 and was taken to the hospital. I thought he would get better and come home, but he had 2 more strokes. After 4 weeks in the hospital, he was moved to a long-term care facility 2 days ago and is in hospice care. I don’t know if he knows he’s dying, because of his dementia. I know and it’s tearing me up that this is happening and there’s nothing I can do. I had a heart attack in May and am trying to take care of myself, but going to the hospital and now the care facility every day have led to feeling overwhelmed and exhausted.
I have support from my daughter and friends, locally and have a wonderful psychologist, but some days, nothing helps. I just wanted to post, as the dementia caregivers group has helped me so much..

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Merry, Alumni Mentor | @merpreb | Nov 8, 2023
In reply to @shirleymac "Thank you so much for your encouragement. I’m small, too and simply can’t take care of..." + (show)
@shirleymac

Thank you so much for your encouragement. I’m small, too and simply can’t take care of him. Well-meaning family members have asked if I had considered home hospice and it just isn’t an option. I do need to ask more questions and I will. I’m not sure who is a nurse, aide, etc., yet, but they have a meeting on Mondays where everyone is available. In addition, I’m starting to get some names snd phone numbers, which helps, too.
I appreciate all the information I can get. This is still new to me and much as I hate it, there’s nothing I can do to change it.

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Shirley- No one is judging you on Connect. Do you think that your well-intentioned family and friends understand why home hospice was not an option? But families are what they are. As if life wasn't hard enough, right?

You mentioned that visiting your husband was difficult. Is this because of your own physical problems or because you hate seeing your husband in Hospice?

Merry

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1 reply
shirleymac | @shirleymac | Nov 8, 2023
In reply to @merpreb "Shirley- No one is judging you on Connect. Do you think that your well-intentioned family and..." + (show)
@merpreb

Shirley- No one is judging you on Connect. Do you think that your well-intentioned family and friends understand why home hospice was not an option? But families are what they are. As if life wasn't hard enough, right?

You mentioned that visiting your husband was difficult. Is this because of your own physical problems or because you hate seeing your husband in Hospice?

Merry

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I just hate that so much has happened, so quickly. I’ e been at the hospital and now the long-term care facility for hours, every day since his first stroke on Oct. 5th. It is draining to see him so thin and unable to do much at all. On a whole other level, I feel exhausted a lot of the time, but he can’t advocate for himself. I’m honestly never sure how long I should stay, especially when he is dozing most of the time. I’m really trying, but had a heart attack in May and am not doing as good a job of walking and exercising as I need to. I just try to keep things and words from others in perspective.

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1 reply
Merry, Alumni Mentor | @merpreb | Nov 9, 2023
In reply to @shirleymac "I just hate that so much has happened, so quickly. I’ e been at the hospital..." + (show)
@shirleymac

I just hate that so much has happened, so quickly. I’ e been at the hospital and now the long-term care facility for hours, every day since his first stroke on Oct. 5th. It is draining to see him so thin and unable to do much at all. On a whole other level, I feel exhausted a lot of the time, but he can’t advocate for himself. I’m honestly never sure how long I should stay, especially when he is dozing most of the time. I’m really trying, but had a heart attack in May and am not doing as good a job of walking and exercising as I need to. I just try to keep things and words from others in perspective.

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Shirley- Any dementia is exhausting for the caretaker. I think that the emotional part is the most difficult. I think this because we can't see it feel it or get rid of it. We can't make it go away or relate to someone that we are doing our best. From what I do know, even if your husband isn't aware now of all that you've done, he does know, deep down, that he is being taken care of and not in danger.

It was very discerning to see my husband thin and drawn too. The nurses had combed his beautiful white hair back and it made him look like a different person.

As far as advocating for him, I rarely had to because the nurses were so wonderful, and even the aids were tremendous. Ask yourself if you are comfortable with his situation in hospice. Do you trust the facility? Have you seen anything that makes your hair stand up with an "Oh, no!"?

If you have no complaints then I don't think that it is necessary for you to guard him. If you need more rest, then this is the best time to get it. Maybe not go every day. You can call and see how he's doing. If the grounds are nice take a walk there.

I do have a suggestion that will help you. Hospice has counselors trained to help the family in all aspects of this horrible disease. Why not see if you can get an appointment with someone? They will be right there, can assess your situation, and make much more valuable suggestions than I can. They can also make suggestions to help you keep your cool with your concerns about your heart. Does your cardiac physician know about your present situation?

What do you think?

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bayviewgal | @bayviewgal | Nov 9, 2023
In reply to @slysi "We are all given assignments in our lives from GOD . Some are more demanding than..." + (show)
@slysi

We are all given assignments in our lives from GOD . Some are more demanding than others , and we ask ...why me ... ! That is a natural question and is probably asked by the biggest amount of caregivers ! The first thing I would suggest is that you go see your husband and pray over him . If he doesn’t know Jesus , do your best to explain that HE is our way to get into Heaven . If your spouse doesn’t seem to totally understand , keep it up anyway GOD will take care of the rest once you open the gateway! That way you also can be comforted too , knowing that he will be going to a better place ! Now as for your part , caregiving is not easy as we caregivers all know ! But GOD gave some of his people the ability to do that task ! Maybe you were hooked up with your husband because you have the talent and love to do what he needs ? I have asked during a tougher day ....WHY ME .... and I feel as though I got an answer ..... BECAUSE You can do it ..,.! My wife and I have been married for 60 years and were going out for 2 years prior to that ! She needs me more than ever and I am blessed to be able to help her ! My biggest prayer is that I will continue to be her helper until she goes to Heaven ! After that I am ready for my trip also ! Stay tough !

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@slysi I am no longer a practicing catholic but i whole heartedly believe in what you are saying about how God has given us the ability to handle the situation of taking care of a loved one during this very difficult time of our lives. I keep asking WHY ME also, and i figure it's because I CAN do it and HE knows it also. So i just do my best....as hard as it is.
My husband and I are young....62 and 58. He was diagnosed 2 years ago and it's been a rough journey...especially since his aphasia has progressed faster than I thought it would. He has a tough time expressing himself in ways that I can understand but somehow we get thru it. For better or worse and in sickness and in health has really hit home but I wouldn't trade the love of my life for anything. And yes, I am blessed to help him also!
Prayers and hugs to both of you

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3 replies
slysi | @slysi | Nov 9, 2023
In reply to @bayviewgal "@slysi I am no longer a practicing catholic but i whole heartedly believe in what you..." + (show)
@bayviewgal

@slysi I am no longer a practicing catholic but i whole heartedly believe in what you are saying about how God has given us the ability to handle the situation of taking care of a loved one during this very difficult time of our lives. I keep asking WHY ME also, and i figure it's because I CAN do it and HE knows it also. So i just do my best....as hard as it is.
My husband and I are young....62 and 58. He was diagnosed 2 years ago and it's been a rough journey...especially since his aphasia has progressed faster than I thought it would. He has a tough time expressing himself in ways that I can understand but somehow we get thru it. For better or worse and in sickness and in health has really hit home but I wouldn't trade the love of my life for anything. And yes, I am blessed to help him also!
Prayers and hugs to both of you

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Well said ! Being a caregiver is a very true sign of TRUE love 💕 ! There is no other reason a person would put themselves through that task ! A lot of people will say that “ we’re here for you,if you need help “ sadly that statement is just someone blowing smoke. One of the hardest parts of caregiving is keeping your Patience ! That can be really a test at times! GOD bless you !

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shirleymac | @shirleymac | Nov 9, 2023
In reply to @bayviewgal "@slysi I am no longer a practicing catholic but i whole heartedly believe in what you..." + (show)
@bayviewgal

@slysi I am no longer a practicing catholic but i whole heartedly believe in what you are saying about how God has given us the ability to handle the situation of taking care of a loved one during this very difficult time of our lives. I keep asking WHY ME also, and i figure it's because I CAN do it and HE knows it also. So i just do my best....as hard as it is.
My husband and I are young....62 and 58. He was diagnosed 2 years ago and it's been a rough journey...especially since his aphasia has progressed faster than I thought it would. He has a tough time expressing himself in ways that I can understand but somehow we get thru it. For better or worse and in sickness and in health has really hit home but I wouldn't trade the love of my life for anything. And yes, I am blessed to help him also!
Prayers and hugs to both of you

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I’m so sorry to hear you’re going through this when you’re so young. Prayers for both of you.

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tullynut | @tullynut | Nov 10, 2023

I took care of my mom after she was diagnosed with dementia. She lived with me for about three years and then needed more help so moved to an assisted living. She was there for about 18 months and her decline required a memory care facility. She eventually went on hospice care at the memory care facility. The best thing the hospice nurse told me was that I needed to go places and do things on my own. She pointed out to me that my mom didn’t know whether I’ve been gone for five minutes or for five days. probably have been the case for a very long time, but I felt compelled to always be there for her. It took a huge toll on me. After the nurse told me that my husband and I took a two week vacation, I was assured hospice nurses contact me if necessary, and that I should focus on a well deserved respite. In hindsight, I wish I had been able to do this sooner rather than later. It is really really hard.

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1 reply
shirleymac | @shirleymac | Nov 10, 2023
In reply to @tullynut "I took care of my mom after she was diagnosed with dementia. She lived with me..." + (show)
@tullynut

I took care of my mom after she was diagnosed with dementia. She lived with me for about three years and then needed more help so moved to an assisted living. She was there for about 18 months and her decline required a memory care facility. She eventually went on hospice care at the memory care facility. The best thing the hospice nurse told me was that I needed to go places and do things on my own. She pointed out to me that my mom didn’t know whether I’ve been gone for five minutes or for five days. probably have been the case for a very long time, but I felt compelled to always be there for her. It took a huge toll on me. After the nurse told me that my husband and I took a two week vacation, I was assured hospice nurses contact me if necessary, and that I should focus on a well deserved respite. In hindsight, I wish I had been able to do this sooner rather than later. It is really really hard.

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I took care of my mom, too. I’m sorry for your difficult time, but am happy to hear you got a much needed break. My husband recognizes me, but he seems to doze a lot, when I’m not sure he knows I’m there. I am actually not going to see him, today and it is such a relief to know he is well cared for.
Thank you for sharing. It really does help to hear from others who have been in similar situations.

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lena0825 | @lena0825 | Nov 11, 2023
In reply to @bayviewgal "@slysi I am no longer a practicing catholic but i whole heartedly believe in what you..." + (show)
@bayviewgal

@slysi I am no longer a practicing catholic but i whole heartedly believe in what you are saying about how God has given us the ability to handle the situation of taking care of a loved one during this very difficult time of our lives. I keep asking WHY ME also, and i figure it's because I CAN do it and HE knows it also. So i just do my best....as hard as it is.
My husband and I are young....62 and 58. He was diagnosed 2 years ago and it's been a rough journey...especially since his aphasia has progressed faster than I thought it would. He has a tough time expressing himself in ways that I can understand but somehow we get thru it. For better or worse and in sickness and in health has really hit home but I wouldn't trade the love of my life for anything. And yes, I am blessed to help him also!
Prayers and hugs to both of you

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I totally agree with you. Do your best & yes, it is hard. The way I figure it is that this is what I signed up for when we married. And, in sickness & in health really does hit home. When we were married, my uncle / God father who officiated at our wedding told us during pre-marital counseling that marriage is a 100 / 100 percent proposition, not 50 / 50. He said that sometimes both partners can give 100 percent, others not so much. Sometimes one partner have to give 150 percent while the other can only give 50 percent in the case of illness, accident, work commitments, etc. Now that my husband has Lewy Body Dementia with moderately severe decline & multiple symptoms 6 years after his first symptom (unidentified at the time) & 3 1/2 years since diagnosis, I too would not trade him for anything. As hard & frustrating caregiving is, I too feel blessed to help him!

It is nice to hear this from another caregiver & to know we are not alone in this! Thank God for this forum to connect with each other.

Take care. I think about my fellow caregivers out there every day.

REPLY
1 reply
slysi | @slysi | Nov 11, 2023
In reply to @lena0825 "I totally agree with you. Do your best & yes, it is hard. The way I..." + (show)
@lena0825

I totally agree with you. Do your best & yes, it is hard. The way I figure it is that this is what I signed up for when we married. And, in sickness & in health really does hit home. When we were married, my uncle / God father who officiated at our wedding told us during pre-marital counseling that marriage is a 100 / 100 percent proposition, not 50 / 50. He said that sometimes both partners can give 100 percent, others not so much. Sometimes one partner have to give 150 percent while the other can only give 50 percent in the case of illness, accident, work commitments, etc. Now that my husband has Lewy Body Dementia with moderately severe decline & multiple symptoms 6 years after his first symptom (unidentified at the time) & 3 1/2 years since diagnosis, I too would not trade him for anything. As hard & frustrating caregiving is, I too feel blessed to help him!

It is nice to hear this from another caregiver & to know we are not alone in this! Thank God for this forum to connect with each other.

Take care. I think about my fellow caregivers out there every day.

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Great post !! 😇 thank GOD that there still are some people in this world with integrity and compassion in their systems ! Watching the news anymore ( if you can stomach it) shows us just how much society has deteriorated! Sadder yet is the fact that the rotten attitudes are spread across so many age groups ! In a recent poll amount college aged .....people ... marriage was voted to be outdated, useless and should be done away with ! When you see how sick everything is getting ,it makes you feel that this world is racing to oblivion ! I myself and Gerri agree that we wish GOD would pull the plug and move us to HEAVEN !

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