Is anyone taking care of a spouse?

[Futurehope]

Hi

I am new to this sight. I have been caregiver to my husband for the last three years and recently had to quit my job and become a full-time caregiver because he can't be alone anymore. He has dementia and Parkinson's and gets lost in our home.It has been a big adjustment because my husband gets so confused with everything and I have to take care of absolutely everything. I feel alone most of the time even though he is here. Unless you are in this situation no-one else understands. Talking with other caregivers is important because we understand the hi's and lo's of our days.

Good Luck and God Bless each of you!

Mary

[c611836h]

 Hello Linda 

 I am writing you to let you know I understand how you feel. My wife has had three strokes and one seizure over the past 18 months she had the surgery to fix the issue which was a brain bypass surgery . Her condition was a rare condition called moyamoya. This condition has left her paralyzed on both sides and bed ridden.  Everything that you said including friends family kids all of that I am experiencing as well we went from an active lifestyle and a successful business and a home with a pool down to nothing .   Due to the surgery on my wife I have not heard her voice since January of this year. I miss that conversation. My wife now is stable and her condition with the exception of her cognitive thought process is still disrupted . I agree that it is very hard and painful and lonely my wife and I have been together for 27 years and this is the most devastating thing that has happened to our relationship.   But I pray for my wife every day and I ask God to restore what she lost and I am courage her every day I see her every day I do everything I can for her every day and still try to work it's not easy all I can say is remember the love that brought you two together and let that be the thing  that continues to lead  and guide you through all of this and that is where you can draw your strength. If you want to reach out directly my email is stmorlando@gmail.com

[JaneCares]

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@l536249b wrote:

Hi, my name is Linda and I have been a caregiver to my husband for the past 44 yrs, but a health caregiver for the past 3 yrs. My husband suffered a massive Aphasia left brain stroke in November 2014. Both of our lives changed forever that fateful day. My life has went from being independent, outgoing and pretty happy and healthy to what I consider Hell on Earth.  He has physical limitations due to Spinal Stenosis, but the main caregiving is a result of his stroke.  His personality has changed 180 degrees.  He is very angry and he ONLY takes his anger out on me. To everyone else he puts up a front as if he is the kindest person around.  I am his one and only caregiver and expected to do everything for him. With the exception of dressing and bathing him. He is depressed which would account for a small portion of his anger. For those who are unaware depression is anger turned inwards. I need help as I feel lost, hopeless, helpless and certainly unloved. Anyone else dealing with a spouse with the same or similar symptoms /conditions and how do you survive?  I have no one to confide in and absolutely no help from our 4 children . I would love to be able to speak with anyone, either man or woman dealing with caregiving. Thank you 

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Hi Linda. "Hell" is most unpleasant, and has the additional quality of being 'forever', like a life sentence. Let me ask you a few questions.

What if you were the person with spinal stenosis and thus some functional limitations, which your husband of decades helped with. And then you have a stroke, and many more limitations come upon you, and you turn from a wife and helpmeet to an angry abusive woman. Do you think your husband would put up with you?

Just asking you to look at your situation from a gender role perspective. Do you feel as though this is your fate, to put up with his anger, and all the work you have to do for him and for you, because .... why?  In the fine print of the marriage contract it says "you will martyr yourself if the husband becomes gravely ill"? 

First place i would go would be to his doctor, with him, and simply say, 'since the stroke, he has become very angry and unhappy. What would you suggest, doc?'  There are medications for agitation, for depression, for confusion, any of which may be a result of the stroke. If the doc can't answer the question, then look for a geriatric psychiatrist. 

What about a behavioral approach? If he's angry, do you need to hop to it? Or can you say, I will do as you ask if you use a nicer tone of voice. Or, if he simply can't help it, hire someone to help: i bet his behavior improves once it's not his wife whom he's yelling at.

Have you considered taking him to one of your 4 children's homes? Park him on the porch and say, have fun, i'll be back in about 4 hours?

Living in hell is pretty awful. what are you willing to do to get out of hell?

Jane

[lb50258545]

It has been a long time since I've written a post and so much has happened.  At the end of September my husband had a stroke and became unable to move his right side.  He also lost his ability to speak, sit up, walk, or feed himself.  He had a Grand Mal seizure at the time and I didn't think he would live through the weekend.  But he did and he got a bit better!  Then in December he had another episode, and another Grand Mal seizure and again I thought well this is it!  But no, he got better.  Then in the beginning of March a third episode, and Grand Mal seizure, and once again I thought this is it, but no he has gotten a bit better since.  He's been on Hospice since last October and he is hagning on.

I'm so tired, emotionally and physically.  Part of me wants him to die and then there's time I think he's going to be fine.  I know he will never be "fine".  What I don't know is how long this will go on.  I want to remembr my husband with love and affection.  And I'm not willing to place him in a comfort care house or in facility hospice.  I know it's my issue.  But I do believe he still recognizes the caregivers we have and he knows when someone he doesn't know comes into the house even if he can't verbalize it. 

I know you don't have any answers I just needed to verbalize my frustrations and pain. 

Thank you for reading!

[JaneCares]

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@lb50258545 wrote:

It has been a long time since I've written a post and so much has happened.  At the end of September my husband had a stroke and became unable to move his right side.  He also lost his ability to speak, sit up, walk, or feed himself.  He had a Grand Mal seizure at the time and I didn't think he would live through the weekend.  But he did and he got a bit better!  Then in December he had another episode, and another Grand Mal seizure and again I thought well this is it!  But no, he got better.  Then in the beginning of March a third episode, and Grand Mal seizure, and once again I thought this is it, but no he has gotten a bit better since.  He's been on Hospice since last October and he is hagning on.

I'm so tired, emotionally and physically.  Part of me wants him to die and then there's time I think he's going to be fine.  I know he will never be "fine".  What I don't know is how long this will go on.  I want to remembr my husband with love and affection.  And I'm not willing to place him in a comfort care house or in facility hospice.  I know it's my issue.  But I do believe he still recognizes the caregivers we have and he knows when someone he doesn't know comes into the house even if he can't verbalize it. 

I know you don't have any answers I just needed to verbalize my frustrations and pain. 

Thank you for reading!

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Hi Linda! Thanks for writing!

It's good to hear from you again. I went back and re-read your earlier posts in which i found your name, found that your husband used to speak Greek before he developed aphasia, that you have worked as an RN, that he has Lewy Body Dementia, that you love each other very much. And you have a therapist and a massage therapist. I'd forgotten about that whole episode in which you both fell!

You are a trooper. I know, how original, how predictable. But i do hope you know how much you are dealing with and have been for so long. I hope you can get out for a massage, and to see your therapist. That you can kiss his forehead, and he can smile back. He is in his body somewhere, he is loving you back.

And it is exhausting.

Do you have a social worker in the hospice program whom you can talk to, frankly? or the chaplain, or both? Many caregivers wish for the death of the one they are caring for, and then regret it, but it is all in the mix, the anticipatory grief, the relief when he gets better, the terror that his death is imminent. And then it isn't.

I'm glad to hear from you, glad you have hospice and a team of healers for you both, and hope you'll keep writing. When the time comes, there is also a grief group at aarp.org/griefcommunity. Happy Easter,

Jane

[lb50258545]

Hi Jane! Thank you for responding. I do have a Social Worker with the Hospice team and a Chaplin, I'm not overly impressed with either of them. And it's probably just me It seems once I told them I was a nurse they assumed I knew everything I needed to know and I have a terrible time asking for help. At the start of Hospice the social Worker gave me incomplete and incorrect information and that just completely blew my trust in her. She's okay now but we don't really get into any type of "supportive" conversations! I had a wonderful conversation with the Chaplin, he was very supportive and recommended a support group in a local parish, which I called but I have not heard back from them and I haven't contacted them again. I do have my issues. My therapist is a young woman, and not really versed in grief work from my experience and I don't have the energy to try and find someone else. So those are my reasons/excuses.

You did hit it on the head when you talked about anticipatory grief. And I totally agree, it's a challenge daily. I'm constantly looking for any signs of positive or negative things going on with him. The last couple of days he's seemed so uncomfortable, yesterday more so than today but I think it's his tummy. He's had 3 loose eliminations and I think he may have stomach or intestinal cramps. I'm hoping it's getting better and by tomorrow be gone. I know he's somewhat better today compared to yesterday!
This too will change as nothing stays the same! Thank you for reading and responding! And Thank You for letting me know about the AARP Grief group as well. I hope you have a very Happy Easter as well!

[a3427c]

 I have been taking care of my wife for all most five years. She has eppilespy, 3 types of authritus, and a variety of ailments and surgeries, too many to list. 

Last year I finally received some help from social security by getting a caregiver 5 hours a day, 5 days a week. 

This has helped in the physical demands on me, but the pressure and drain of taking care of ALL of the household duties has been weighing me down and taking its toll on my health and psyche. We have 2 teenage children in our home and I am the only one that can drive, cook, clean, shop, on-&-on. 

That is just a brief explanation of my situation, anyone else in a similar situation? Please Reply if you are. I'm feeling more and more isolated lately.

[lb50258545]

Hi a3427c Newbie! I'm so sorry to hear you have the total burden of caring for your wife, two teenagers, the house, a job, etc.! I care for my husband 24/7, as well as the house, finances, shopping, etc. So I understand your frustrations and the emotional drain! My husband has Lewy Body Dementia and became unable to speak last September. At that time he also lost his ability to walk, feed himself or sit up. I have a caregiver 7 days a week for 3 hours a day and three afternoons a week for 2 hours. At the most my husband is awake 6 hours a day. I have been caring for him for the past 3 and a half years! Caring for my husband wasn't as difficult till this last September but with his loss of body movement and becoming aphasic it is harder for me. I continue to talk to him hoping he understands me and wishing I could once again hear his voice! I'm so happy when he occasionally smiles I feel he knows who I am and we connect.
Caregiving is a very demanding, all consuming job when you love the person! I do hope you are getting some time for you. I hope you are also getting sometime with your teenagers. I'm sure they feel the lost of both their parents! You definitely need support, not just physically but emotionally and spiritually as well!
This is a great site to vent feelings, get support, share experiences, etc. You made a GREAT start reaching out!

[er29895137]

Yes.Since 2011.  My wife has late stage FTD. Body is functional, brain is 2 year old with autism, no memory of life, family, or basic motor skills, eating, drinking. She is unable to follow instruction, her eyes work but brain does not interpret.
She is a shell that has to be hand fed. 2 people to toilet, walk, sit, stand. She is combative and can not communicate, But she has personality and we laugh often with her, when she is not wanderiing aimlessly, screaming and growling.

Our state has a great Medicaid program, one of the best, but I still have to fight, and win for adequate attendant hours. Family members are paid caregivers 80 hours per week. It is still not enough ,as she requires someone to be in her space for her safety 24/7 and she doesn't like to sleep. We have to toilet her every 2 hours even in sleep hours.
Our much berated Congress has legislated some great help for us in Medicaid.
I have had to fight the greed of the insurance companies who are contracted to provide Medicaid covered services. 

[kleino]

I hope this is okay to post.

I write a post for stressed-out caregivers as many may have
1) overlooked these resources and solutions
2) may not be technologically knowledgeable about these available solutions
https://www.retirementincome.net/retirement-living/caregiving/

If this helps one person to relieve some stress or burden, then the post has value.

Larry Klein, Publisher
Retirement Income Blog

[ginaherms]

Husband made this statement today if the liver doctor would prescribe me a night time pain medication then I would stop drinking which us worse on my liver a pain pill at bedtime or alcohol all day.

[Jlincoln008]

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@geh66 wrote:

Husband made this statement today if the liver doctor would prescribe me a night time pain medication then I would stop drinking which us worse on my liver a pain pill at bedtime or alcohol all day.

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One way to possibly 'intervene' is to enlist the help of his doctor. Pain is often undertreated in addicts and alcoholics who are still using, and the alcoholic has a legitimate beef. They want to self-medicate with alcohol because they can't sleep. is there a way you can drop by the doctor's office and leave a note with the nurse, a few days before an appointment? you could tell the doctor that your husband has pain, is actively drinking, is non compliant, and can the doctor please address these issues. 

sometimes patients listen to doctors...

jane

[ginaherms]

Have been over it and over it with liver Dr who says get youself a primary care physician and tell him. I found a primary care physician made an appointment husband had me cancel it just like he had me cancell his MRI appoinment today.

[ginaherms]

Have been over it and over it with liver Dr who says get youself a primary care physician and tell him. I found a primary care physician made an appointment husband had me cancel it just like he canceled his MRI appt today.

[Jlincoln008]

So frustrating when the person you are caring for does stuff like telling you to cancel a doctor's appointment. The human's ability to self destruct knows no bounds.

I'm sorry.

Jane

[ginaherms]

It. Is most frustrating when the individual who is in self destruct mode wants to take their care giver down with them and the legal system makes it so time consuming and difficult.

[ginaherms]

It has been some time since my last post the namiair support app has closed down husband ended up at er with turns out to be pneumonia but left AMA so we got no official diagnosis or medication they also did a chest x-ray & an ultrasound of his heart 

Have decide next time not going to take him till he gets so sick he is unable to speak for self and then I am taking all his belongings and I am going home so if he leaves ama he will be doing it on foot and he will be doing it nekid. He has let me schedule an appointment with his PC physician we have to go to hospital to get Dr reports ect.

[JaneCares]

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@ginaherms wrote:

It has been some time since my last post the namiair support app has closed down husband ended up at er with turns out to be pneumonia but left AMA so we got no official diagnosis or medication they also did a chest x-ray & an ultrasound of his heart 

Have decide next time not going to take him till he gets so sick he is unable to speak for self and then I am taking all his belongings and I am going home so if he leaves ama he will be doing it on foot and he will be doing it nekid. He has let me schedule an appointment with his PC physician we have to go to hospital to get Dr reports ect.

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Hi Gina,

I looked back at some of your old posts and i remember some of your issues about your husband's non compliance and also some instability in your job. Since he is disabled for mental health reasons, and the NAMI app is closed, i wonder if there is other support for you. Seriously, the stress you are dealing with every day must feel overwhelming at times. Yet you need each other, right? At least financially speaking? I dunno, you tell me. Are you ready to leave? I bet you imagine leaving a lot. A chronically mentally ill person is a huge challenge no matter who you are.

So, sources of help: any in person NAMI groups? A NAMI counselor?  A pastor? Do you have health insurance with mental health benefits? A counselor even just once a month might really help. I work for a county mental health clinic and we take all comers, have a sliding scale, and bend over backwards to get people the counseling they need.

I'm so sorry. Argh.

Jane

[ginaherms]

Granddaughter story is husband son started doing meth and may be selling it bailed on babies mana she wants the world to support her and the kids lost public assistance because she won't do job search thing see where that's going, There was a movie with Clint Eastwood every way but loose that is how I feel stretched every which way but loose

[ginaherms]

No there are no other souces I have looked I have even tried to find an attorney to help me get adult guardianship so I can set something boundaries on his drinking, the way he talks to me ect but none will help me. Recently I had to take him to ER with chest pains turns out he has pneumonia and get left er ama before talking to Dr so he did not get the scrip for antibiotics. He has appointment with PC physician next week we have all the reports from er. In the last 2 weeks he has

ran 2 red lights yes he was dui, yes want out in the worst way at times but he has no one else, I figure I could probably file for divorce but by the time I go thru the divorce courts and all the ugliness he will probably have died, and I still love my husband and all I want to do is take care if him and his best interest therefore mine, I have taken steps to take some control we had an unauthorized charge to my bank account so they cancelled that card which happened to be the one he had they sent a new card I took that virgin card put on all the utility accounts my aarp subscrip auto insurance ect and then locked it up, I have taken a position box and next I plan to order a new card for his direct Express card and cancel the one he has, I will give him $415 of the cash we get from renting rooms and that us his for the month when it's gone it gone get gets $830 a month SSD so the cash I am giving him is half of that his check will pay rent and part of the electric bill my pay check will pick up the rest of the utility bills ect and what's left if the cash will go to the car payment and husband can lump it or like it. I also plan to get my name on utility bills rental agreement is already in my name and rental agreement with our 2 roomies is in my name. Wether he likes it or not he needs me and not just financially and he has created a situation where I need him  I have accepted that my husband has decided he wants to commit suicide by alcohol nothing I can do about it so things need to change so that I can prepare financiallly for his passing and the loss of his SSD benefits and be able to manuver myself into a position to be there for his 3 granddaughters should the situation arise the face ending up in the system that's a whole other story 

[JaneCares]

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@ginaherms wrote:

No there are no other souces I have looked I have even tried to find an attorney to help me get adult guardianship so I can set something boundaries on his drinking, the way he talks to me ect but none will help me. Recently I had to take him to ER with chest pains turns out he has pneumonia and get left er ama before talking to Dr so he did not get the scrip for antibiotics. He has appointment with PC physician next week we have all the reports from er. In the last 2 weeks he has

ran 2 red lights yes he was dui, yes want out in the worst way at times but he has no one else, I figure I could probably file for divorce but by the time I go thru the divorce courts and all the ugliness he will probably have died, and I still love my husband and all I want to do is take care if him and his best interest therefore mine, I have taken steps to take some control we had an unauthorized charge to my bank account so they cancelled that card which happened to be the one he had they sent a new card I took that virgin card put on all the utility accounts my aarp subscrip auto insurance ect and then locked it up, I have taken a position box and next I plan to order a new card for his direct Express card and cancel the one he has, I will give him $415 of the cash we get from renting rooms and that us his for the month when it's gone it gone get gets $830 a month SSD so the cash I am giving him is half of that his check will pay rent and part of the electric bill my pay check will pick up the rest of the utility bills ect and what's left if the cash will go to the car payment and husband can lump it or like it. I also plan to get my name on utility bills rental agreement is already in my name and rental agreement with our 2 roomies is in my name. Wether he likes it or not he needs me and not just financially and he has created a situation where I need him  I have accepted that my husband has decided he wants to commit suicide by alcohol nothing I can do about it so things need to change so that I can prepare financiallly for his passing and the loss of his SSD benefits and be able to manuver myself into a position to be there for his 3 granddaughters should the situation arise the face ending up in the system that's a whole other story 

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Hey, Gina,

What a hot mess. Well, one thing i think you could do is call the police when he is drinking and driving so he'll stop doing that. What you do NOT want is him hitting someone and hurting/killing them. I am an addictions counselor now, and he'd be arrested and hopefully given the option to divert his sentence into alcohol treatment on probation. i work with a bunch of these folks. I run a DUI group. With the threat of jail, i've seen some serious alcoholics get sober. 

that's one option.

I also counsel meth users. Tough crowd. 

There is help out there for you, even if he's a stubborn old coot sick with the serious and often fatal disease of alcoholism, and the free version of help is Alanon. Do check it out. 

And keep talking.

Jane

[geoherms]

Thank You, I am seriously and I mean seriously considering doing that next time he takes the van after drinking it is in both our names, hopefully the police will let him call me to come get the van.

It is our only transport and I need it for work. Here in Texas being his first offense that I know of he may get 6 months but that would be long enough for me to do what I need to to do.

It seems it may be the only way I have to get him in front of a judge then so be it, he goes down for dui then maybe that will make it easier for me to get coplete adult guardianship over him, maybe the judge might nake that part of his probation.

[JaneCares]

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@g477525h wrote:

Thank You, I am seriously and I mean seriously considering doing that next time he takes the van after drinking it is in both our names, hopefully the police will let him call me to come get the van.

It is our only transport and I need it for work. Here in Texas being his first offense that I know of he may get 6 months but that would be long enough for me to do what I need to to do.

It seems it may be the only way I have to get him in front of a judge then so be it, he goes down for dui then maybe that will make it easier for me to get coplete adult guardianship over him, maybe the judge might nake that part of his probation.

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It sounds like a battle royale. And exhausting.

I'm not an attorney, but i'm pretty sure that you can't just get guardianship over a combative very sick person who's made bad choices, UNLESS two physicians say he's incompetent to make either health or financial decisions (two different determinations.)  I went through a training to investigate claims of 'harm to self and others' for the purpose of committing someone to mental health care, and the proof you have to come up with is pretty intense. People have the 'right' to make really dumb choices. The only time the state steps in is if he is a danger to himself or others and that is very strictly defined. Do you have an attorney? They are not cheap: perhaps your friendship network has a lawyer in it? If you have a faith community, maybe there's one there. You could ask about the process of guardianship. But i really think taking away his keys is the best thing, and then dealing with his Royal Orneriness becomes less of a threat. Death by car is not a good choice. As you know.

I'm serious about you finding an Alanon group. Everyone there has been through some version of this with an alcoholic. It's free (a dollar donation is suggested) and it's good stuff.

Keep talking. We're here.

Jane

[ginaherms]

 It a battle royal and it is exhausting, I did look for an Alanon group there is none in my town or neighbor hood, as for the conservatorship laws I think they are ridiculously I am not asking to lock him up and throw away the key I am asking to have control so I can start setting boundaries for his behavior and put him on allowance, he my not be a physical danger to him self or me blut he is an indirect physical dangerto himself he is committing suicide by alcohol and is becoming a financial danger to both of us,

[Jlincoln008]

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@geh66 wrote:

It is most frustrating when the individual who is in self destruct mode wants to take their care giver down with them and the legal system makes it so time consuming and difficult.

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Which is why you have a choice to detach from his self-destruction, standing by, but letting the natural course of things, as HE chooses the courses, moves relentlessly forward. 

Detachment. While still loving him. Very hard. Also necessary for your own sanity.

Jane

[lb50258545]

I have been caring for my husband who has Lewy Body dementia for the past three years.  Up till a week ago Tuesday he was doing very well.  He was able to sit up on the side of the bed for his bath, he could help get himself dressed, he could walk from his bed to his chair, he could feed himself and he was able to talk.

Then he had an "episode" after lunch.  I don't know what happened, but after he took his afternoon nap he was limp all over.  He couldn't even hold his head up.  He can no longer sit up independently, talk, feed himself, or walk.  Then two day later he had a grand mal seizure in the evening. 

The dementia specialist and his primary physician are saying nothing.  I spoke with the office nurse at the dementia specialist office and she basically said, "It's the disease.".  I am heart sick.

He has slowly regained some movement in his arms and left leg, but his right leg is flaccid and he can sit up independently or talk.

I started hospice services for him "in case" he passed as I don't want to have to call 911.  I know he can graduate from hospice if he gets better, this is just so frustrating, heartbreaking, AWFUL!

I feel scared all the time and I'm an RN, but I'm so afraid he's going to have another episode and I know there is NOTHING I can do to.  And I think that's the biggest problem I have, I can't make this better for him, other than caring for him.  I'm just so tired and sad all the time.

Any suggestions other than me taking a respite from him or placing him in a nursing home?

Thank you for taking time to read!

[Jlincoln008]

Dear wife who is an RN who's taking care of your husband who has Lewy Body dementia for the past three years,

I am so sorry this is happening to you. It sounds to me like he had a stroke, but the doctors are acting like, 'eh, there's nothing to be done...' But what about a little PT? if he's regained some of his abilities, then perhaps some of the disability can be reversed. it would help you to physically care for him if he could do more for himself. 

Darn.

I think it's a good idea to sign him up for hospice to avoid hospitalizations, and you can take advantage of what they have to offer. like the 3 to 5 days/week aide who can thoroughly bathe him in the hour to 90 minutes they can stay. The social worker could be your new best friend: ask her (or him, though i have yet to meet a mail hospice social worker and i used to be a female one) about how to help him, how to take a break, what is available in your county or city. Like a respite care program, or the best agencies to use to hire an aide so you can get away for 4 hours or an entire day. or to hire so you can sleep through the night at least one night a week.

If its Medicare hospice, then the benefit is recertified after 90 days, or three months, and then if he passes (meets criteria for decline) then you've got another 90 days. after the first 6 months, the recertification process happens every 60 days. Medicare insists on this. but you always have warning. And the social worker is supposed to help you with the transition back to regular care. you don't have to take him to the hospital even if he is NOT in hospice, if you have a living will/ advance directive. And in some states there is something called POLST or MOLST, a medical order for life sustaining treatment, which indicates that he is not to be transferred to a hospital. i can explain fore of that if it's of interest.

meanwhile you have a lot on your plate, including especially the deep sadness that goes along with missing your life partner, who he used to be.

what is helping you to survive this? who else can help you? do you have adult children who can help? Does he have a brother or sister who can take him on for an afternoon?

thank you for taking the time to write. please write more. we all learn from each other's stories.

Jane

[lb50258545]

Hi Jane, Thank you for your replay and Thank you to the other person who replied regarding the essential oils spray. I will definitely try that suggestion!

No we don't have adult children to help us, nor do we have family that lives in state to help us. I don't know if he has any family in this country as we have never had any contact with them.

I do have someone who comes in for 3 hours in the morning and on Tuesday, Wednesday and Thursday afternoon for 2 hours so I can go swimming. So I make sure I get out everyday. Thank GOD for friends! Last month my therapist died unexpectedly, so it's been hard because I haven't found anyone to go to yet. So much change.

Today he was complaining of stomach discomfort and before I could try to give him lunch he had a vaso-vagal episode with extreme diarrhea. Now he's resting in bed. I had a stomach bug last week I was hoping he wouldn't get it but I think he did!

I wish I knew how to help him but I've done everything I can think of to keep him comfortable. Yes, we have a MOLST form, and a DNR form for the home, we also have a Power of Attorney and all the other legal papers needed. After his last hospitalization I decided we were done with that, they can't help him and it frightens him, so I'm keeping him home where he can be comfortable. I'm doing the best I can. I just need to get past my fear.

I know I'm afraid he's going to die and I know he's going to die so it's a double edged sword.

I know Hospice can offer volunteers but I'm so tired of people being in my house. I just want some peace and quiet and normalcy. Some day all of this will change, and I'll miss him terribly but I won't miss the work, the fear, the tears, the pain of watching a brilliant man slowly disappear.

Thank you for reading.

[Jlincoln008]

 Oh my, the death of your therapist is a blow! I'm very attached to my therapist! Good grief! Another thing to grieve over. I'm so sorry.

It sounds like you've taken care of the many things that most folks have neglected, and you're taking care of your health and your mind, too, (when you find another therapist!)  The loss of your brilliant husband/friend/companion is so painful, and ongoing. 

I hear you about having a quiet home under your own control.  

I'm so glad you've written. 

We are here.

Jane

[lb50258545]

It's the holidays.  I placed my husband in Hospice at the beginning of October.  He had an "episode" the end of September which left him unable to situp, talk, walk, or feed himself.  I say "episode" because I don't know what happened exactly.  Prior to his afternoon nap he had been talking to me, fed himself lunch, walked to his chari with the aide and myself and was able to sit up independently.  After lunch his whole body was flaccid.  I didn't send him to the hoispital because they can't fix his dementia.  For the first three days I thought he was going to die, but he didn't and here we are facing Christmas. 

I didn't rea;ize how draining these past three months have been on me till now. I'm so tired regardless of how much sleep I get and I feel no one cares about me.  They always ask about my husband, but not how I am.  I spoke with my best friend tonight and told her I was just so tired I don't have the energy to deal with anymore problems and she said, "well maybe it's time to place him!"  I told her now wasn't the time to talk about that. 

I just want someone to listen to me, to be there for me.  I realize it's difficult to listen to me.  I've chosen to care for my husband for the past three and a half years.  And now that we are facing the end, who knows when, how do I say enough and put him in a home?  My therapist tellls me to get more help.  Okay, but then when do I have them come into the house.  I have an aide help me get him up and then I go out for a couple of hours.  I come home the aide leaves, I feed him lunch, then he takes a nap for a couple of hours.  I sit him up in his chair, give him his drink, and meds, then I lift him into bed and again he sleeps for an two hours. Then I give him his last meds for the day and change him, let him rest for another couple of hours and I check his pants, change as needed and then tuck him in for the night and I'm off to bed.  I look forward to our time alone.  Three afternoons a week I swim and a caregiver comes in and sits with him while he's in bed.  So I fet out.

But my feelings are more about feeling isolated and alone.  It's so hard now that my husband can't talk.  I'm constantly guessing what does he need?  And hoping I'm giving or doing what he needs!  And waiting for him to die.  No one wants to talk about it and we can't talk about it anymore. 

I'm trying to live one moment at a time.  I can deal with my husband and what he needs, but I don't have any left over energy to deal with the house or any issues involving the house.  I just can't do it all anymore.  Now if I could just let go of the feeling I NEED to do it ALL, I may make it.  One moment at a time.

Thank you for reading.  Any suggestions, not involving placing my husband or getting more help would be greatly appreciated.

Thank you!

[c611836h]

I do understand about the non-talking part. One of the effects that my wife has gone through after he double stroke episode was the time of non communication. I was very hard for me. I am so used to my wife and i having late night chats. My only suggestion is to continue to love him the same because that is the thing that has kept you thus far it will carry you the rest of the way no matter how it turns out My wife has since then recovered her speech even though it is not the same as it was