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Re: Is anyone taking care of a spouse?

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Message 31 of 282
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!
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Re: Is anyone taking care of a spouse?

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Message 32 of 282

@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

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Re: Is anyone taking care of a spouse?

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Message 33 of 282

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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Re: Is anyone taking care of a spouse?

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Message 34 of 282
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!
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Re: Is anyone taking care of a spouse?

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Message 35 of 282

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. 

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Re: Is anyone taking care of a spouse?

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Message 36 of 282

 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.

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Re: Is anyone taking care of a spouse?

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Message 37 of 282

lb50258545 wrote:a
Again, Thank you for your understanding and insight! I'm sorry to hear you have the crud and hope you are feeling a bit better! The joys of winter and viruses! Hopefully it will get better and better very soon! Till later! Take Care!

I've been thinking on this. So much of people's behavior, including my own, has so little to do with the person they are talking to or ignoring or in this case subtly judging.  If family and friends are collectively wagging their fingers in a kind of "i told you so. i told you to be more careful... that caregiving is really too much in the end..."  or some variation, they may very well be projecting their own priorities and fears on your situation. It's not that they think so little of the two of you. It's that they don't even want to THINK about the tough choices they'll have to make in the future when, pretty much inevitably, they will be faced with their own declining health, or their spouses, or a parent, or god forbid a disabled child. 

 

do any of these friends ever say something like, "do let us know if there's anything we can do"?  if so, you can always take them up on it. Like, call one of them up, or even less intrusive, email or text. While you're on the mend, is there any way you could shovel our walk? or, i'm too tired to cook, any chance you could bring by a casserole?  I dunno, sometimes when you get very specific, people can help. you've taken away the struggle of thinking and offering.

 

or, if there's a friend or family member you particularly miss, see if you can schedule a time to see them, at a cafe, say. reach out. people might respond.

 

just a thought.

Jane

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Re: Is anyone taking care of a spouse?

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Message 38 of 282
Hi Jane, Thank you for your response! I so appreciate your support. I do feel my health issues are being blamed on my choosing to care for my husband. You hit the nail on the head! And it hurts. It hurts to think that family and friends think so little of me or my husband that they would blame either of us for our current life situation. I sometimes think they are jealous of my husband because I have focused my life and attention on him and not them. It's so sad because I would love to have them involved in our life, not to do anything but visit, have a meal with us, share a holiday, or just chat on the phone without freaking out if I'm hurt or having a bad a day. But that's life and it will change!
Again, Thank you for your understanding and insight! I'm sorry to hear you have the crud and hope you are feeling a bit better! The joys of winter and viruses! Hopefully it will get better and better very soon! Till later! Take Care!
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Re: Is anyone taking care of a spouse?

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Message 39 of 282

@lb50258545 wrote:
Hi Jane! Thank you for your response it was so timely! Well Christmas and New Year's have come and gone and my husband is still here and most likely will be for awhile! I was beginning to feel better about life with the holidays over and then I hurt my leg getting out of the car, last Wednesday. I've been to my Primary physician, my chiropractor and my massage therapist. It is getting better but I find it disturbing when I'm told this has happened because my body is just stressed out from caring for my husband.
I suppose it's my fault for asking what happened? And when I'm told it's the stress of caregiving I feel so guilty because I must be doing something wrong that I can't care for him and me. I decided it's just too much constant stress and worry.
My massage therapist was the best, we sat and talked and she basically said if this is what you want to do then this is the right thing for you to do! And today she told to keep moving so my knee doesn't lock up. I left so much more empowered talking with her both days.
I know I can this for my husband. And I can learn to let go of the fear and stress that has been constant aspects in my life since he got worse.
I realize I do worry about him but I'm working on letting go of that as it has not done anything positive for me. This situation will change, I don't know when or how but it will happen.
Thank You for reading, Thank You for caring! I hope your New Year is going well! Till later!

I'm so sorry you hurt your leg! Sounds like you  have a team of people helping you. Funny (not funny) how people react to a caregiver like yourself. You DO choose this, and people get into a space where they blame you for your dedication, your hard work. I mean seriously? Blaming the victim. So common, so unhelpful. You choose it. You're doing it, you are taking care of yourself, juggling all of it. So i wish people around you would give you a break!

 

Please keep us in the loop as to how things are going. You are both inspiring and very smart about all of this. 

 

2017 would be great if i hadn't caught the crud that's going around. 3 days of flat on my back aches and pains, coughs, and faucet nose. Lovely. This too shall pass.

 

Thank you so much for the update! 

Jane

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Re: Is anyone taking care of a spouse?

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Message 40 of 282
Hi Jane! Thank you for your response it was so timely! Well Christmas and New Year's have come and gone and my husband is still here and most likely will be for awhile! I was beginning to feel better about life with the holidays over and then I hurt my leg getting out of the car, last Wednesday. I've been to my Primary physician, my chiropractor and my massage therapist. It is getting better but I find it disturbing when I'm told this has happened because my body is just stressed out from caring for my husband.
I suppose it's my fault for asking what happened? And when I'm told it's the stress of caregiving I feel so guilty because I must be doing something wrong that I can't care for him and me. I decided it's just too much constant stress and worry.
My massage therapist was the best, we sat and talked and she basically said if this is what you want to do then this is the right thing for you to do! And today she told to keep moving so my knee doesn't lock up. I left so much more empowered talking with her both days.
I know I can this for my husband. And I can learn to let go of the fear and stress that has been constant aspects in my life since he got worse.
I realize I do worry about him but I'm working on letting go of that as it has not done anything positive for me. This situation will change, I don't know when or how but it will happen.
Thank You for reading, Thank You for caring! I hope your New Year is going well! Till later!
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