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Re: Is anyone taking care of a spouse?


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

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Thank You c611836h for your response! I agree I continue to talk to him and love and share with him. There are times he tries to talk and I'm hoping I'm understanding what he is saying correctly. But either way, I'm here for him! I so glad your wife regained her speech! Till later! Take Care!
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..."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.....

 

 

Hello there. And here it is Christmas Eve. Perhaps your last one with him. I don't think you need to place him at all. You have a good set up there, you get breaks, you care for him beautifully and gently from the sounds of it. You do need non judgmental presence in the form of friends or family who LISTEN and do not judge, who care for YOU as well as him. People ask about him as one way to guage how YOU are doing, but they could be more direct. It isn't easy to know what to say to someone like you, but all the same that is no excuse for being dismissive or callous. I think people are filled to the brim with their own problems and since they cannot solve YOUR problem(s), they snap out an answer. Get more help! Put him in a home!  Ah, no. What is so hard is that there is no easy answer. One day at a time one hour one minute at a time is the pace of caregiving, particularly in hospice when you are indeed waiting for the next decline, wondering if today will be the day, and then a week goes by, or another month.

 

Your isolation is worrisome for the long run, when he passes away. And that is tough. There's a new york times article about it that is important for everyone to read, i think: http://www.nytimes.com/2016/12/22/upshot/how-social-isolation-is-killing-us.html?mabReward=CTM&recp=...

 

I recently moved to a tiny town in a very rural area of Oregon. First thing i did was ingratiate myself to the librarian, who knows a great deal about the town and what goes on. She directed me to a bulletin board, which is in the post office of all places. I learned there's a volunteer group that meets monthly and plans fundraisers for this or that. They raise money for sports equipment for the local school since there are a lot of low income students. I joined the group. Then i checked out the local churches. There is no church in my denomination within 2 hours' drive so i joined one that i can walk to. It's worship style is not what i'm used to. but i have gotten to know more folks and i'm learning more names. 

 

i'm also online with the town's facebook page, where i've learned all kinds of things.

 

Where do you live? What interests do you have? Is there any hobby you have, like singing, or knitting, that might link you to others?  

 

Can you even think about this now? if not, wait.

 

But there are many readers of this caregiving community and writers full of wisdom. So please keep writing. Thank you for writing what you have. 

 

Jane

 

 

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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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@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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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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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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for my wife I used a very unique combination of essential oils for her muscle paralysis for her stroke issue. We used
Rosemary, 30 drops
Lemongrass, 30 drops
Lavender, 30 drops
About 1/4 cup fractionared coconut oil and distilled water. put it in a small plastic spray bottle and spray it on the the areas and rub it in ( massage)
this combination activates muscle memory and gave her function of her arm and leg again . I also found the best oils to use are from the company doTerra . it is up to you if you want to give it a try . i am just making a suggestion based upon what i have dealt with. We saw a response the very same day
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Yes, My name is Ottis. I'm retired and taking care of my totally disable wife. It's extremely challenging.
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@o473291h wrote:
Yes, My name is Ottis. I'm retired and taking care of my totally disable wife. It's extremely challenging.

Welcome, Ottis!  

 

How are you coping with the challenges? Does anyone help you? Do you have hired help to give you a break? Is she cooperative with you, and with her medication or therapies?

 

There's a lot of wisdom in this caregiving community. What tips can you offer? And what questions do you have?

 

Jane

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I also am taking care of  my  spouse. Yes it is very challenging. My wife suffered 2 strokes that left her right side paralyzed and  very disrupted speech.  After over 96  days in rehab and  now she is home  (still getting therapy in house). I am now  unable to work  because of it.   trying  to balance out her meals, administering  medications, helping with  her therapy,   bathing, dressing and  going to the bathroom, it can get very overwhelming  at times. But i hold on to the love  that i have for her  and  just keep doing  what I do for her.  I wont  complain because i know that GOD spared her and  this is a nother test in life for the both of us. I believe that she  will  be able to walk again  it  will just take some time. As for me i am just trying  to find  ways to keep the income  going  seeing that i was self employed our  income has come to a stop.  A  friend of mine  told me to go to this web site called Go Fund Me  and  set up donation fund  to help  support our situation. So I have tried it  and  so far it seems to be  working out .. but  over all  yes  there are days that i get  very  tired  and  no I really  dont have  any  help. Our  children live  very far away  and  have their own families to deal with. So I  dig deep and  encourage myself and remind my self why I love this woman so much  and  then it makes it  all  worh  while 

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@c611836h wrote:

I also am taking care of  my  spouse. Yes it is very challenging. My wife suffered 2 strokes that left her right side paralyzed and  very disrupted speech.  After over 96  days in rehab and  now she is home  (still getting therapy in house). I am now  unable to work  because of it.   trying  to balance out her meals, administering  medications, helping with  her therapy,   bathing, dressing and  going to the bathroom, it can get very overwhelming  at times. But i hold on to the love  that i have for her  and  just keep doing  what I do for her.  I wont  complain because i know that GOD spared her and  this is a nother test in life for the both of us. I believe that she  will  be able to walk again  it  will just take some time. As for me i am just trying  to find  ways to keep the income  going  seeing that i was self employed our  income has come to a stop.  A  friend of mine  told me to go to this web site called Go Fund Me  and  set up donation fund  to help  support our situation. So I have tried it  and  so far it seems to be  working out .. but  over all  yes  there are days that i get  very  tired  and  no I really  dont have  any  help. Our  children live  very far away  and  have their own families to deal with. So I  dig deep and  encourage myself and remind my self why I love this woman so much  and  then it makes it  all  worth  while 


Hi there, wonderful husband,

 

You certainly take your vows seriously. Now that she's home, you realize that it's MORE than a full time job but there are no breaks. You love her and it shows. You dig deep and you do it one more day. One day at a time. 

 

GoFundMe is a wonderful source of help. I'm glad you're gathering some contributions.

 

She may well walk again. I'm guessing though that she won't be 100%. I hope I'm wrong. Right now, it sounds like a lot of pressure on you, a lot of work. When you can see a little bit further down the road, there are steps you can take to protect both of you, financially. And protect YOUR health since you may be pushing really hard but at some point you may poop out. Even temporarily. And you don't want to get sick.

 

There are a couple of steps you can take and neither are free but the people you'd consult could look at your assets, your income, and the medical future when it becomes a little bit clearer (perhaps in another 6 months or so). Either an eldercare lawyer or a geriatric care manager can assist you both in looking at what you have and what you need to continue her care and protect your health as well. 

 

Your wife is one lucky woman. And you are a lucky man, since based on your devotion, i'm assuming you have a fulfilling marriage. What a blessing.

 

How do you cope with the biggest challenges? How do you dig deep?  A number of folks talk about their dogs being great sympathetic buddies. What works for you?

 

Jane

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YEas it is especially when the spouse dos not want to do their part to take care of themselves and then wants to turn it on you.

GEH
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I am with you on this. I am 16 yrs younger. Everything I do is wrong. I have taken over bills and stopped the mail because he obsessed over politics and charities. Spending money on charities, donating to veterans, Animal sites, Erection Meds. He is in denial about his illness and blames everything on me. Even the stuff he orders on line. I sent back about 5 auto ship products last week. I still have to work. Haven't turned 60 yet. Friends don't want to be around us. I feel embarrassed and alone. 

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Glad you wrote! Glad your dog is such a comfort! And, good for you for taking over the bills. I was a care manager for an old coot who gave away hundreds of dollars a month to horses, right wing politicians, and other non essentials!

 

How do you keep yourself in good spirits?

 

Jane

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I do not know how I keep my self in good spirits I guess my dogs faith hope determination.

GEH
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That is the problem husband WILL NOT let me take control of the bills or household, This is why I am considering going to court for conservatorship or for a conservertor to be assigned then I can start to set boundaries for no acceptable behavior, stop being a forced enabker, a list of house hold chores with an amount do those chores you earn money. Basically he behaves like a child he gets treated like one he behaves like a man he gets treated like one.

GEH
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I am representative payee to his social security benefits and want to take total control of the bill paying process not to control him undermine or diminish him in any way but to take stress off him but he WILL NOT let go at all in any way shape I am feeling the time has come to go for conservatorship 

GEH
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I recently came upon this article in the Washington Post: https://www.washingtonpost.com/news/inspired-life/wp/2016/08/30/i-was-my-husbands-caregiver-as-he-wa...

 

Basically, this wife really poured heart and soul, and 7 years, into caring for her husband, first by heroically searching for a cure for his cancer, and then by caring for him as he declined and passed away. She found the clarity of purpose and nobleness of effort that I've heard other caregivers speak of.

 

I'm wondering how caring for someone with, say, dementia, is different. There are more years involved. The hope for improvement, (let alone cure) is elusive. The family dynamics are difficult: is there anyone else helping? Are there relatives who are not helping but nevertheless critical?

 

I wonder if anyone out here in aarp caregiving land feels the way this woman does and did? My hat's off to her. I do feel she is unusual, though.

 

Thoughts?

 

Jane

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My Husband has 2 sons in Washington State but they are in their early twenties and are just not able to be of help they are young and immature they younger one has 3 daughters the oldest of which is 3 and is struggling to cope with parent hood, my parents do not know that I am married to this man but are aware I am trying to help care for him and my mother is facing her own issues with my father who is in his eighties and showing signs of some kind of mental issue he forgets things misplaces things and swings from amgry to happy in a new york second she has her own health issue and is recovering from a broken hip so I choose not to burden her with my issues. I have searched and searched for some form of support group and there are none, I did find NAMI AIR and have the app on my cell phone so I can go there to talk sometimes when husband is sleeping good I go sit outside with my dogs Big Red (Mr Hugs) and Shorty (Mr Kissy) and just cry big red will get on his hind legs wrap his doggie arms around my neck pull my head into his chest and give me a bug huge bear hug, to which he ussually does not want to let go, then Shorty takes a turn giving me lots of wet doggie kisses so much doggie love Iam a luck lady and I tell them that and most times it helps. 

GEH
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I am, he has intermittend explosive disorder with bipolar manic tendencies, Alcoholic Cirossis of the liver, Alsoholic Haptitus and Hepatic Echmia, will go to doctors but not go for the MRI's Ect that they need, will not take his pysc meds and while he does take the meds for his liver he does not take them properly. Between trying to take care of husband, the dogs thew duplex and work I get no time for my self and I am about at my breaking point, I would file for diivorce but for,  I love him very much I do not know why he hasno one else to care for him  and I do not see him being with me for christmas. I cannot help feel that I am 50 years old and life is too short for this. He is no a bad man that needs to get better he is a sick man that needs to get well.  As a result of living with and trying to care for a person with mental health issues I have found a cause a dream, I want to go to Washington to speak to the powers that be in hopes to get them to put legislature in place thatwill put a stop to the destruction mentally ill individuals who refuse treatment bring to the llives of those who love and care for them and who are trting to care for them and protect thems from themselves. 

There are legal steps that people like me can take but is is a LONG and HARD legal road. Things must change the united states needs a new and better mental health care systems one that provides real treattment and real after care and real support for the people who a trying to care for an MI and be there support system. 

GEH
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@g36565h wrote:

I am, he has intermittend explosive disorder with bipolar manic tendencies, Alcoholic Cirhosis of the liver, Alcoholic Hepatitus and Hepatic Eschemia, will go to doctors but not go for the MRI's etc that they need, will not take his psych meds and while he does take the meds for his liver he does not take them properly. Between trying to take care of husband, the dogs, the duplex and work I get no time for my self and I am about at my breaking point, I would file for diivorce but for,  I love him very much I do not know why he has no one else to care for him  and I do not see him being with me for christmas. I cannot help feel that I am 50 years old and life is too short for this. He is not a bad man that needs to get better he is a sick man that needs to get well. As a result of living with and trying to care for a person with mental health issues I have found a cause a dream, I want to go to Washington to speak to the powers that be in hopes to get them to put legislature in place that will put a stop to the destruction mentally ill individuals who refuse treatment bring to the llives of those who love and care for them and who are trting to care for them and protect thems from themselves. 

There are legal steps that people like me can take but is is a LONG and HARD legal road. Things must change the united states needs a new and better mental health care systems one that provides real treattment and real after care and real support for the people who a trying to care for an MI and be there support system. 


G,

You are so, so right! The care in the USA for people with mental illness is abysmal. I don't want to discourage you from advocating for change, but i do know that even congressmen with mentally ill sons have trouble getting good care. What i'm wondering is whether there is a NAMI group near you that you could attend for support. The National Alliance on Mental Illness provides free support groups as well as local advocacy. http://www.nami.org/Find-Your-Local-NAMI Has a 'find your group' feature in your state.

 

Meanwhile, you are aware that he isn't going to get better, although his quality of life can probably be improved some. But there are limits, right? So accepting, and taking care of your self, and enlarging your caregiving circle, are all SURVIVAL STRATEGIES for you, right?

 

I could be completely off base here.

 

I do want to say that i admire you. And i worry about you. And i hope there are some resources out there that support you. There should be a VILLAGE of support surrounding you, and that's what's missing in the ye olde individualistic US of A. But. There might be more resources than you are aware of?

 

Say more?

 

And a deep bow of respect to you for hanging in there, with him, and with yourself.

 

Jane

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And I have the NAMI AIR app on my phone the liver doctor believes that there is still health and life left in his liver and he could have a reasonably long life if he stays off alcohol, liver doctor believes this because husband was so severely jaundice that the liver dr believed the jaundice would be permanent husband stopped drinking 3 months and the jaundice went away liver Dr was blown away.I also am concerned about depression because husband is always saying Ill be gone soon.

GEH
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Thank you for your words  and there is s Nami in Dallas unfortunately I am just not able to get there and there are no other support groups in GP TX, I am concidering going for concervertorship over my husband and his financial and legal affairs, I hate to step on his independence but am concerned about drinking and liver disease my be having on his mental faculties he is already showing memory loss. 

 

GEH
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@geh66 wrote:

Thank you for your words  and there is s Nami in Dallas unfortunately I am just not able to get there and there are no other support groups in GP TX, I am concidering going for concervertorship over my husband and his financial and legal affairs, I hate to step on his independence but am concerned about drinking and liver disease my be having on his mental faculties he is already showing memory loss. 

 


Hi GEH. I'm so glad you replied!

 

The liver is an amazing organ that does regenerate. I do hope for both of your sakes' that there is recovery and improvement possible. I'm so glad to be proven wrong!

 

Have you consulted with an attorney? Have you talked to your husband about this? If he is able to CHOOSE to give you power of attorney over his finances, then all you need is power of attorney form signed by him and notarized, and the easiest place to do that is the bank where his accounts are. More than one bank if he has accounts in more than one place. Banks have notaries. Signed, notarized, done. Or, you can put your name on the accounts and make them joint. He has to sign that change on the account, also.

 

If you don't trust his recovery from alcohol drinking, then it's a whole 'nother ball game. You'd have to have 2 physicians document his lack of 'capacity' and then petition the court for guardianship. A little memory loss isn't going to do it. 

 

You've probably already figured this out. It IS complicated.

 

I wish you could get out to a group. Is there no one who can hang out with him while you're gone for a few hours? 

 

Your poem says it all. You are sad, and you cry. I'm glad you get it out. I wish for more for you, though, too. 

 

Keep writing...

 

Jane

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My husband will NEVER willingly give me conservertorship I WILL have to go to get a lawyer and go to court to do it, That is one of or part of his mental health issues CONTROL, I chalk it up to the possibility he is feeling a sense of control of his life due to his mental health and subsequent addiction/Substance abuse issues. I am biding my time because I am feeling it is only a matter of time he ends up in hospital again and that is when I will act so that I can keep him in the hospital last time he was in hospital he left against doctors wishes.
GEH
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Another Poem
I shed Tears
Tears of Anguish
Tears of Anger
Tears of Despair
Tears of Frustration
Tears of Outrage
Tears of Pain
Tears of Sadness
GEH
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Hey GEH,

I'm so glad you have your wonderful dogs to comfort you. You do have your hands full otherwise. Your parents have their own struggles, his sons are young men with lots going on and a thousand miles away. You have the NAMI app, thank goodness for that. 

 

You mentioned that your husband gets depressed and says that you won't be around for much longer? is that right? You are not his first wife, i take it. I can see how he might have a history of driving people 'crazy, and away.'  I have a friend who's second husband was like that. He is currently being cared for by his 2 children, each of whom have jobs and families. His 9th wife is divorcing him so that she can avoid being brought down, financially and otherwise, by his decline. He's much older, in his 80s, and a hot mess. But with a long history of bipolar alcoholic mental illness. Enough charm to attract 9 different women to be married to him. But now that he's falling apart, it's his 2 blood kin who are taking him on. Fortunately he's a veteran and is eligible for a bunch of help. This includes placement in a facility, which is the next step unfortunately. He flushes his drugs down the toilet... sigh. His own worse enemy.

 

I hope you have friends, even just one, who can listen to you and not pass judgment, but just be a loving presence and a pleasant distraction from your daily battle. 

 

After you cry (and crying is a great catharctic activity in my own life), what helps you keep going?

 

Jane

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My dogs are wonderful my Nicknames for them are Mr hugs and Mr kiddies. The one thought that I hold on to that keeps me going is My husband is not a bad man that needs to get better he is a very sick man who needs to get well.

 

 

 

 

 

GEH
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Thank You for your words if support.

GEH
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No he keeps saying HE won't be around much longer, his ex wife died in April 2016 of a ruptured hernia I am his 3rd wife

GEH
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