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Re: Is anyone taking care of a spouse?

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@JaneM202893 wrote:

I, too, am new to this site. I am caring for my husband of 52 years. He is a retired physician and has major back issues and is in constant pain. Our life previously centered on friends, travel and frequent theater events and other social occasions. In the last 5 years, his condition has deteriorated and he is no longer able to do these things. He needs help with basic living. He has had back surgery which helped for about a year, but then gradually became almost completely disabled. While he doesn't have dementia, his affect is different and depression has taken over his life. He has little interest in anything. I find myself resentful and long for our old life. He is currently in a trial for a nerve block stimulator, but that doesn't seem to be working. To be fair, he tries to be reasonable and not be too demanding, and he is appreciative of my efforts. We have a very good relationship and he is my dearest friend, but I'm feeling overwhelmed and depressed and needed to vent. 


Hey there, Jane. From one Jane to another... We hear you. And i'm thinking, why not let the two of you be joined by others to enlarge the caregiving circle? I don't mean to assume, but, if he was a physician, and you two traveled extensively, why not use some savings to hire help. One day a week to give him a thorough bath, shave, shampoo, and you a break? Someone to take him out for a few hours while you nap or see a matinee? A male aide, a female aide, hire someone who'll give him a new perspective on what it takes to care for him. And allow him to be pampered by someone else besides you?

 

If you're saving for a rainy, guess what. It's raining. 

 

Do you have any children? Time to visit, time to help around the house, someone please mow the lawn? I dunno what you need done but the burden of his disability does not need to fall on just the two of you. 

 

It IS a challenge to face the losses of physical decline. But his mind his sharp, and you have many excellent memories to recall, trips to remember, movies to stream or rent or watch. What have you tried? What does he still enjoy? If you can get a break, you will be refreshed enough to renew your marriage and be creative... hopefully....

 

How can we help you feel less overwhelmed? What do you think would be a first step?

Jane

who lives in rural oregon with a spouse who has MS

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Re: Is anyone taking care of a spouse?

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@RichardT964998 wrote:

I have been caring for my wife, who has severe progressive MS, for 18 yrs.  We lived in CT, where we received Medicaid.  We now live in NV who refuses to give us Medicaid because we make too much money!  I am 79 yrs old.  Does anyone know if and how I can get paid for caring for my wife?   


Hi Richard!  I'm sorry that you did not receive a response to your question! And sorry that each state sets a different level of 'poverty' and eligibility for Medicaid. Connecticut is a wealthy state and apparently more generous. Have you found your local Area Agency for Aging? Look up your zip code on www.eldercare.gov and the agency closest to you will pop up. Call them and ask: about spending down to eligibility for Medicaid, about respite care so you can get a break now and then, and whatever else you're wondering about. If you can, make an appointment to go to the agency in person. The folks you meet with should know all about what's available to you and your wife. 

 

Will you and your wife eventually choose Assisted Living? Do you have other family members who can help? Even if they live back in Connecticut, perhaps someone can fly out for a week and help out.  I hope you've considered a support group for caregivers, or for people with MS and their families. My partner has MS, too. 

 

One more thought: AARP also has a caregiver hot line that might be helpful: https://www.aarp.org/caregiving/basics/info-2018/support-line.html  explains the hours and expertise, and the phone number is  1-877-333-5885,

 

 

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Re: Is anyone taking care of a spouse?

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Hi Jane,

It's so great that you took the time to write out your frustrations!  I, too, took care of my husband till his passing and as much as I loved him it was/is difficult, frustrating, tiring and yes depressing to watch the man you love and knew as vibrant and involved become so debilitated.  I hope you have some friends or caregivers who can sit with your husband so you get your much needed breaks.  Self care is so very important!  As is venting so give yourself permission to do both!  This site is a great place to vent, there's no judgement and lots of support!  Sending you lots of prayers!  Linda

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Re: Is anyone taking care of a spouse?

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I, too, am new to this site. I am caring for my husband of 52 years. He is a retired physician and has major back issues and is in constant pain. Our life previously centered on friends, travel and frequent theater events and other social occasions. In the last 5 years, his condition has deteriorated and he is no longer able to do these things. He needs help with basic living. He has had back surgery which helped for about a year, but then gradually became almost completely disabled. While he doesn't have dementia, his affect is different and depression has taken over his life. He has little interest in anything. I find myself resentful and long for our old life. He is currently in a trial for a nerve block stimulator, but that doesn't seem to be working. To be fair, he tries to be reasonable and not be too demanding, and he is appreciative of my efforts. We have a very good relationship and he is my dearest friend, but I'm feeling overwhelmed and depressed and needed to vent. 

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I have been caring for my wife, who has severe progressive MS, for 18 yrs.  We lived in CT, where we received Medicaid.  We now live in NV who refuses to give us Medicaid because we make too much money!  I am 79 yrs old.  Does anyone know if and how I can get paid for caring for my wife?   

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♥ Shelties are not my whole life ∽ but they make my life whole ♥
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♥ Shelties are not my whole life ∽ but they make my life whole ♥
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♥ Shelties are not my whole life ∽ but they make my life whole ♥
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Re: Is anyone taking care of a spouse?

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 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

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Re: Is anyone taking care of a spouse?

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Well it has been some time since I have posted here we moved from our roach infested duplex to a nice 3b 1bth house husbands attitude got no better neither did his drinking, then between April & May of this year it's been back & forth to hospital with husband leaving ama on last they drained 7 liters of fluid from belly he had an infection of gallbladder, he stayed till they released him and has been sober since June 1st nearly 3 months if he goes back to drinking he will die and it will not be pretty,  yes I am scared, 

and am very sad because he has 3 Grand daughters one of which he has never met or held and may

never will, he used to tell me he loved me more than life and all I can think is how can he say that and drink away his health his life our relationship our life together no you loved alcohol more than life and me, and what am I going to do when he is gone all of this breaks my heart to tears I cry myself to sleep every night, no there is no life insurance, to ad to all this his 20 year recovering meth head old son is now living with us, lays around sleeping all day will not wash a dish after using it and reuse it will not get on his bike and go look for work has supposedly refiled for social security disability benefits but last time he was here he was supposed to go for an eval and he blew it off thinks he won't have to go for another one I got bad news for him, he has also supposedly filed for snap, his dad won't call him out on his laziness I think he is afraid if he does his son will run off and get high on meth I feel like we are being held hostage by David it's not fair, I bring food stufds home from work and it's always give it to David I brought it home for me, and then I may not have a job come October as my company lost the Walmart sampling events contract to AMS for the last year they have shared the contract so that AMS could have time to hire their own people oct that agreement ends and I have not received a recrutment call from either side, if husband dies his SSD benefits go with him I will need that job, 

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