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Silver Conversationalist
Posts: 36
Registered: ‎08-28-2016

Re: Is anyone taking care of a spouse?

Message 11 of 266 (526 Views)

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

 

GEH
Silver Conversationalist
Posts: 36
Registered: ‎08-28-2016

Re: Is anyone taking care of a spouse?

Message 12 of 266 (501 Views)

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 

 

 

 

GEH
Frequent Social Butterfly
Posts: 170
Registered: ‎05-04-2011

Re: Is anyone taking care of a spouse?

Message 13 of 266 (436 Views)

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.


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

Silver Conversationalist
Posts: 36
Registered: ‎08-28-2016

Re: Is anyone taking care of a spouse?

Message 14 of 266 (449 Views)

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.

GEH
Silver Conversationalist
Posts: 42
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 15 of 266 (452 Views)
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!
Frequent Social Butterfly
Posts: 170
Registered: ‎05-04-2011

Re: Is anyone taking care of a spouse?

Message 16 of 266 (456 Views)

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!


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

Silver Conversationalist
Posts: 42
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 17 of 266 (382 Views)

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!

Silver Conversationalist
Posts: 42
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 18 of 266 (765 Views)
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!
Info Seeker
Posts: 4
Registered: ‎09-25-2015

Re: Is anyone taking care of a spouse?

Message 19 of 266 (801 Views)

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. 

Info Seeker
Posts: 1
Registered: ‎02-08-2017

Re: Is anyone taking care of a spouse?

Message 20 of 266 (793 Views)

 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.