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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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Sometimes God is the only one you can talk to.  My wife contracted Hep C in 1985 through a blood transfusion.  She has lasted a lot longer than expected but she is now in liver failure.  She participated in a clinical back in Jan, 2015 and was cured.  Unfortunately it was too late, the damage is already done.   They cannot consider a liver transplant because she has developed Pulmonary Hypertension and two growing spots in her lung.  It is too dangerous to do a biopsy, but she has now developed congestion and heavy flem.  All the signs are there.  Thank God for my daughter for helping out, but she is no one to talk to, as are her brother and sisters.  No one wants to discuss it, much less visit to give encouragement.  Sadly, the burden is on the spouse.  I draw comfort from our 43 years of marriage and how we were when we were young.  Thankfully, I am healthy enough to care for her needs.  I pray for patience and compassion.  I tell her how much I love her, make her as comfortable as possible and hope things work out, however every week hope fades.  Yes, God is our best friend right now, he's with you now, just talk to him.  Good luck

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@mg50694312 wrote:

Sometimes God is the only one you can talk to.  My wife contracted Hep C in 1985 through a blood transfusion.  She has lasted a lot longer than expected but she is now in liver failure.  She participated in a clinical back in Jan, 2015 and was cured.  Unfortunately it was too late, the damage is already done.   They cannot consider a liver transplant because she has developed Pulmonary Hypertension and two growing spots in her lung.  It is too dangerous to do a biopsy, but she has now developed congestion and heavy flem.  All the signs are there.  Thank God for my daughter for helping out, but she is no one to talk to, as are her brother and sisters.  No one wants to discuss it, much less visit to give encouragement.  Sadly, the burden is on the spouse.  I draw comfort from our 43 years of marriage and how we were when we were young.  Thankfully, I am healthy enough to care for her needs.  I pray for patience and compassion.  I tell her how much I love her, make her as comfortable as possible and hope things work out, however every week hope fades.  Yes, God is our best friend right now, he's with you now, just talk to him.  Good luck


Dear mg,

 

I believe that God created Hospice Care for people just like your wife, you and your family. And the fact that she would benefit from Hospice does not mean that she has 'only' 6 months to live. Here's a really good article about it: http://www.aarp.org/relationships/caregiving-resource-center/info-08-2010/elc_facts_about_hospice.ht...

 

Aside from whether or not you and your wife go forward with hospice care, I do wish that you both could talk with someone about what you are facing. Her slow decline is heartbreaking and hard work. Your burden is great. Share it. Talking honestly and heartfully about what is going on reducing your sense of isolation and desperation, and also HERS. You both and your children have a lot to say to each other. Don't put this off. Tell the truth, together. Even if the truth is that you know this is hard, you know that the doctors don't have a cure, and that every moment together is worth the trouble, the smell, the exhaustion. (But not in isolation).

 

Do you have a minister who could help?

 

To find out more about hospice, google 'hospice' and your county or city and call up the non profit ones. they can send someone out to you for free to explain how it works. but my guess is you have a lot more talking to do before you take this step.

 

What is your next step, with God's help?

 

Jane

(a church going hospice social worker)

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I worked with hopice when my Dad was terminally ill.  Hospice was wonderful and they took care of everything at the end.  My wife just spent 4 weeks in the hospital with 2 weeks in ICU and was released a couple of days ago.  She had Drs. coming in and telling her she was going to be alright.  I even began to believe it until a nurse practitioner told her the truth.  My wife chose not to believe her.  She came home and is now bed ridden and can only get up with assistance.  It is very hard to see a previously strong and vibrant wife reduced to this within a year.  Her deterioration is pretty obvious.  This evening she began to cry and said that she must be very sick and she must be dying.  I assured her I would be with her until the end.  We may now be able to go forward and discuss end of life.  Her Dr. said she is a flu from passing away.  I will continue to support her, but she is not far from a skilled nursing home to care for her much better than we can at home.   Once that occurs, hospice will not be far away.

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@mg50694312 wrote:

I worked with hopice when my Dad was terminally ill.  Hospice was wonderful and they took care of everything at the end.  My wife just spent 4 weeks in the hospital with 2 weeks in ICU and was released a couple of days ago.  She had Drs. coming in and telling her she was going to be alright.  I even began to believe it until a nurse practitioner told her the truth.  My wife chose not to believe her.  She came home and is now bed ridden and can only get up with assistance.  It is very hard to see a previously strong and vibrant wife reduced to this within a year.  Her deterioration is pretty obvious.  This evening she began to cry and said that she must be very sick and she must be dying.  I assured her I would be with her until the end.  We may now be able to go forward and discuss end of life.  Her Dr. said she is a flu from passing away.  I will continue to support her, but she is not far from a skilled nursing home to care for her much better than we can at home.   Once that occurs, hospice will not be far away.


MG, your story about your wife is heart breaking. Before our blood supply was safe, she contracted HepC, and now her liver is failing. She sounds like she is still with it and oriented to what's going on, which makes her very sad. To be reliant on you, too weak to participate actively in life, and feeling hopeless... that is a terrible way to live. I'm glad you have your faith. Does she share it? Is someone from your faith community coming to visit, and to pray with you? 

 

From your previous posts, you shared that your Dad received hospice care, and that you have had good experiences with nursing home care. My father was in one for 7 years following a stroke. There was no way he could be cared for at home. For your wife, though, there are many options, and just for the sake of giving you a sense of hope for the options, let me lay some out.

 

You can hire home care aides. Even for a few hours once a week, with an aide coming at a set time, you know you'll have a few hours to get out, get a haircut, and go grocery shopping. Around my area (the Washington DC area), the aides are about 22 dollars an hour, which is not cheap. But you go through an agency, so they are bonded and trained professionals, and even if they aren't doing a whole lot, they are there. And can bathe her, do her hair, do a load of laundry, heat up a meal. 

 

Although you sound like you don't want to confide in your children, perhaps they can take turns visiting her and giving you a break. Each of your kids have a relationship with her, and i hope that everyone would benefit from being together, even if she doesn't feel well. I bet they are worried about both of you.

 

Hospice IS an option right now. Even though most people think of it as necessary and helpful only at the very end of life, people receiving hospice care at home actually live longer on average than their counterparts who don't receive the care. Because an RN comes at least once a week and adjust medications with her doctor carefully. Because an aide comes to bathe her. Because a chaplain comes for deep conversation. Because a social worker is available to help with recommendations on home care, on disability, pension, funeral arrangements... and to help with conversations with adult children and grandchildren, too. 

 

if her doctors are not offering any treatments that will help her get better from the root causes of illness, she could benefit from the palliative care that a hospice doctor provides, with the team of professionals that come to you and her.

 

she is lucky to have you as a husband

 

what do you think? what questions do you have now?

 

Jane,

used to be a geriatric care manager, now is a hospice social worker

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My daughter, who is our only child, moved in with us along with her husband and two children.  She has really been helpful, especially in the administrative side.  She has been unable to fully accept the eminent death of her mother, they are very close.  She is coming to accept what is about to happen now and is beginning to talk about it.  My wife is now back in the hospital and has gotten worse.  All the end stage symptoms are showing.  She wants to go home until the end nears and then return to the hospital.  I will do everything I can to meet her wishes, but it so hard to watch her go through this.

 

Regarding faith, she taught me about the mercy of God.  Her faith is much stronger than mine and was working towards becoming a nun when I stole her away.  Our parish priest has always been close to us and is critical to her spiritual well being.  He told me once that her spiritual presence was unusually strong, that of most nuns.  She tells me she is not afraid of dying, but only wanted to see our 8 and 9 year old grandkids grow up and be part of their lives.  This is why she has kept on fighting.  

 

God has given us 43 wonderful years of marriage.  I promised her adventure before she said yes and I kept my word.  We grew up together, had many great adventures and have lived in many places.  We did live life to the absolute fullest.  Our daughter, the spittin' image of my wife, is working towards her PhD in Special Ed, so we have no complaints.

 

We will be talking hospice or palliative care before I take her home.  Oh how I will miss her until we reunite and have the greatest adventure of them all.  Thanks

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God Bless You and your wife mg. I know how hard it is to watch and wait with the one you love die. Sending you and her lots of prayers and positive energy! lb
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  • My wife is in hospice now and her life is slipping away.  She has been kept sedated until she crosses over.  God bless her and keep her.  She is no longer in pain.  She is sleeping comfortablly and peacefully.  The end is near and her journey is about to begin.  I've been caring for her for so long and we've never been separated.  All of a sudden, all the hours of caring for her are insignificant.  I would do it again if I could hold on to her for one more day.  My life is about to change, but I don't know in which direction and I don't know how I'm going to do it.
Honored Social Butterfly

@mg50694312

Many of us know exactly what is going on and what you are going through now and into the future.  It is hard, very hard.

 

My husband and I not only were man and wife for 38 years but we worked together too - so we were together 24/7 - that did not change after he became ill.  Once told that his life would be over soon, we turned to his bucket list of him participating in our daughters wedding and he did - wheel chair, O2 and all - but what a glorious day.  He rose and danced with our daughter to BB King "What A Wonderful World"; he picked the song.

 

Two weeks later, I was where you are today.  In our home just how we had planned it to be . . .

 

A life changing time, for sure, definitely not easy - time, faith, putting one foot in front of the other, one day at a time, day in and day out, has helped me these last 10-years,  In one way, it went by sooooo slowly but in another, those years trekked off pretty fast.

 

I, and I am sure many others who read your post today, will be thinking about you - yes, her journey is about to begin - as my beloved husband said before he entered that peaceful rest . . . .

" the greatest adventure of a lifetime ! "  That was just the kind of person he was.

 

I still miss him and always will but there have been many joys in those passing years and ones which I share with him in mind, heart and spirit.

 

May peace be with you and I leave you with a rememberance comfort -

 

If I should go tomorrow
It would never be goodbye,
For I have left my heart with you,
So don’t you ever cry.
The love that’s deep within me,
Shall reach you from the stars,
You’ll feel it from the heavens,
And it will heal the scars.
                                            Anon

Periodic Contributor

My dear wife passed away Monday at 3:00 PM.  We were all with her, including her brothers and sisters.  We prayed the Chaplet of Devine Mercy during her passing.  The poem you gave me as been very comforting, thank you so very much.  I have never felt such pain as I do now, but I know it will get better with time.  The funeral mass is Friday.   It will then be time to say goodbye as her soul departs and to fulfill my promise to care and love our grandchildren.  I will never let them forget their beloved Nana.

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@mg50694312 wrote:

My dear wife passed away Monday at 3:00 PM.  We were all with her, including her brothers and sisters.  We prayed the Chaplet of Devine Mercy during her passing.  The poem you gave me as been very comforting, thank you so very much.  I have never felt such pain as I do now, but I know it will get better with time.  The funeral mass is Friday.   It will then be time to say goodbye as her soul departs and to fulfill my promise to care and love our grandchildren.  I will never let them forget their beloved Nana.


I am so so sorry. I bet it was a beautiful, meaningful mass for you and your family. And now it's Sunday. And then it will be Monday. And the world will continue to go on, and you'll feel like, how dare it? Because there is a hole in your heart.

 

We have a grief community here, although for the most part i've been the only one posting. Perhaps you can put something out there. It's at the end of the thread found at www.aarp.org/griefcommunity.  I was just at a bereavement workshop and one of the suggestions was to tell the story of the ending of the life, to write it out, either for oneself (as in a journal) or to read to a loved one. Or even in a blog or community like this one. There's something very catharctic about remember every detail you can, about her breathing, say, about something someone said, about how you counted her breaths... if you want to.

 

Thank you for sharing your journey of caring with us. 

 

She is with you wherever you are.

 

Jane

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Dear mg, I'm so sorry to hear about your wife's passing. You did an amazing job caring for her and know she loves you for all you did and being there! I'm sending you lots of prayers and positive energy to you and your family. Now it is time to take care of you. In time, I hope you can come to once again enjoy life, your family and grandchildren! God Bless You! lb
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I am having one of those days.  I don't know why I feel so yucky but I do!  I feel emotionally drained and physically exhausted and I'm doing everything I can to take care of myself!  My husband is now getting up at 10AM has breakfast, is helped to drink 5 glasses of fluid betwenn breakfast and lunch at 1Pm which doesn't always work.  If the aide and I can stand him up we toilet him and then get him resettled for lunch.  The aide leaves and I give him lunch and help him through that.  He's usually so tired by noon that he doses off before lunch, while on the commode and during lunch.  So after lunch I put him in bed.  He seems much more comfortable in bed and typically will sleep fairly soundly during the afternoon and through the night.  But not today.  Today he has been restless after sleeping for a good two and a half hours.  Throwing the covers off and pulling on the siderail.  I think he needs to poop as he hasn't for the last 3 days with today being the 4th.  I've given him Prune Juice a couple of days but no results yet.  I just feel so inept!  I know I'm doing all I can to keep him comfortable and healthy, I'm just frustrated.  I hate this disease.  And I know for a fact that things will change AGAIN!  As soon as he poops he will feel better, so will I and once again life will go on.  I know you don't have solutions, I'm not expecting any solutions actually.  I just needed an ear!  Thank you for reading!  I hope your day is going well!

Honored Social Butterfly

Hospice can be utilized after a physician has certified that death is most likely to be within 6-months (180 days).

 

 

Periodic Contributor

My sympathies-have you contacted hospice? They are wonderful in these situations.

 

Mars
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@kb4660 wrote:
This is my first time on this site. I am caregiver to my husband who has a brain tumor.... He has always "seen the glass as half empty" while I have always seen it as "half full". He can still bathe himself and get to the bathroom alone. I am responsible for nearly everything else. He gets frustrated that he cannot help. I get frustrated answering the same questions again and again and his indecisiveness. He panics if I am not near. I need some alone time. ...
Over the holidays our son and I had a disagreement because I remarked quietly to him, "See what I deal with." I mistakenly thought he was someone with whom I could share my frustration. Thankfully we talked it through and are on good terms again. Consequently, I remind myself to keep those comments and complaints from escaping my mouth.

My goals for today are to take a long walk, read two chapters, work on a quilting project, eat a healthy meal, and go to church.

Hey there, KB. Just a couple of thoughts.

 

One is, why was your son so offended? Good grief. Can he spend a day with his dad, just the two of them? Not as 'punishment' for his being overly sensitive, but just to WAKE UP about how much care his father requires. I'm just wondering. Seems like you took the brunt of a response that is not based in reality, and one you do not deserve.

 

Secondly, ever by movie tickets online? I use 'fandango.com' or 'movietickets.com' or 'landmarktheatres.com' because i go to a lot of independent movies. Once you buy on line, you're guarenteed a seat even if you arrive late. Takes the stress out of movie going, for me.

 

Thirdly, seems you have very reasonable and modest goals. I hope you were able to reach them!

 

So how did the day go?

 

Jane

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Hi kd! I too care for my husband, I can appreciate the frustrations of caring for someone you love and I understand why you felt it was safe to share your feelings with your son only to find your son unsympathetic. I'm sure your son has his own fears, insecurities and anxieties about his Dad and the care he requires. Caring giving is difficult, demanding and stressful on the whole family! Have you explored any options with your husband's doctor to have help come into your home. That may give you a couple of hours of break and give your husband someone to interact with for a couple of hours! I hope you got to take your walk, read your book and enjoy the rest of your goals for the day! Take Care! lb
Contributor

Hi all, I been taking care of my wife 24/7 for the last three years. She was diagnosed with Lewy Body Dementia. It's been very challenging, and I have feel the loneliness and isolation that many of you have experienced.

Bless you all.

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@lp0907 wrote:

Hi all, I been taking care of my wife 24/7 for the last three years. She was diagnosed with Lewy Body Dementia. It's been very challenging, and I have feel the loneliness and isolation that many of you have experienced.

Bless you all.


Hey there, lp, glad you joined us. If she has Lewy Body Dementia, does that mean she's youngish? (anyone under 70 is young in my book.) I bet it's challenging. What do you do to keep from going nuts?  Reach out beyond the isolation? Combat the loneliness?  Who else helps? Who's in your 'caregiving circle'?

 

Bless you, too.

 

Jane

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I'm the primary caregiver for my husband, 47 diagnosed with relapsing remitting MS. In 2012 he had an episode of septi shock that left him with a permanent colostomy. He was in ICU on life support for several weeks after dialysis and a few surgeries. The resulting muscle memory loss put him in a wheelchair. He's become miserable to be around. He finally got over the depression, but our marriage never recovered. He's consistently treating me like an employee, and when he's not giving orders, he gets downright abusive because he's lashing out in anger. We've had a counselor doing home visits with him for the past 18 months. He's housebound for the most part, which mostly makes me the same. He has incredible anxiety and panics at the idea of being left alone for too long because he doesn't want to do anything for himself. (True that he can do little, but he doesn't want to do the little he can.) 

I'm pretty much at the end of my rope, wondering why it is I allow myself to be treated this way when the man I married would have screamed at me if I ever allowed anyone else to try it.

Hoping to find others that are hanging in there ...

Jenn

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Hey Jenn,

I don't have any specific answers for you but I feel your frustration and anxiety! Is there any chance you could get someone to come in to sit with your husband for a couple of hours so you could get a break and do something for yourself? If you could set something up so you could get a daily break it might make life more tolerable! Maybe you could talk with his doctor about getting help the insurance would pay for. Good Luck! Sending you lots of prayers and positive energy!
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My husband is 58 years old, suffering from a cognitive disorder, pulmonary hypertension, he's had a pulmonary embolism, has diabetes, weeping wounds on his legs and feet, is on oxygen 24/7, has a heart condition and I am his only caregiver.  While it is a privilage it is also taking a huge toll because I work fulltime and take care of everything in and around the house.  We have looked in to home care but he doesn't want anyone doing anything for him but me and as of late I can't seem to do anything right for him.  He gets upset when I'm away from the house for any length of time except for work and to go to the store so I pretty much stay home.  When I do go anywhere I'm tense because I don't know what I'm going to face when I get home (ie: what disaster has taken place, what mood he's in, etc.).  I think the worst part of it now is the fact that every time he gets a pain he automatically thinks he's going to die.  For the past few days whenever I leave the room for any reason he tells me he hopes to still be there when I return.  It is so incredibly frustrating to deal with so much negativity on top of everything else and he gets angry when I try to be positive about the situation.  Has anyone else dealt with this before?  If so, how did you handle it?  Thank you for any advice you can give and thank you for letting me vent.  I don't get to do that and just typing this has been such a release.

 

Lee Ann

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@lw45663336 wrote:

My husband is 58 years old, suffering from a cognitive disorder, pulmonary hypertension, he's had a pulmonary embolism, has diabetes, weeping wounds on his legs and feet, is on oxygen 24/7, has a heart condition and I am his only caregiver.  While it is a privilage it is also taking a huge toll because I work fulltime and take care of everything in and around the house.  We have looked in to home care but he doesn't want anyone doing anything for him but me and as of late I can't seem to do anything right for him.  He gets upset when I'm away from the house for any length of time except for work and to go to the store so I pretty much stay home.  When I do go anywhere I'm tense because I don't know what I'm going to face when I get home (ie: what disaster has taken place, what mood he's in, etc.).  I think the worst part of it now is the fact that every time he gets a pain he automatically thinks he's going to die.  For the past few days whenever I leave the room for any reason he tells me he hopes to still be there when I return.  It is so incredibly frustrating to deal with so much negativity on top of everything else and he gets angry when I try to be positive about the situation.  Has anyone else dealt with this before?  If so, how did you handle it?  Thank you for any advice you can give and thank you for letting me vent.  I don't get to do that and just typing this has been such a release.

 

Lee Ann


Lee Ann,


Your husband doesn't have the only vote in the house. You both need help. I work with several wonderful home health agencies and they have amazing trained vetted patient caregivers who usually charm their way into a home and become beloved right quick. He'd do well with a male caregiver, if your area has those. Most of the certified nursing assistants in my region (DC area) are from west africa, and the only challenge really is how understandable their English is. But the dedication, skill, caring they exemplify is a great gift to the families that hire them.

 

Do you have Long Term Care Insurance? if so, it may pay for them. If not, it's still worth the money. About 18 to 22 dollars an hour. But 4 hours of help is still cheaper than an hour of psychotherapy or a massage!!! 

 

He is miserable, from the sound of it, and spreading that misery to you. I agree with the other poster, the doc needs to give you both some guidance. Also, in many regions there are home visiting doctors who'll see him at home. He's 'home bound' so he'd be eligible. Who knew there are doctors who make home visits. There are! Anything to lighten your load.

 

What help do you have around you? Please tell us more. You aren't alone!

 

jane

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I will be so glad when this holiday is over.  I have no Christmas spirit and I feel like all I do is end up crying.  My husband has lost his ability to walk, is having difficulty sitting up and is sleeping so much!  I'm doing the best I can but my heart is breaking.  I have nothing to celebrate.  And then this evening my brother tells me he's coming up for Christmas.  That should cheer me up but honestly it doesn't, it feels like more work.  And then I feel I should go buy him a Christmas gift which I have no energy to do.  If I hadn't asked him today if he was coming up I think he would have just pulled into the driveway on Christmas.  I know these circumstances will change, what I don't know is when, how and what next.  I would love to have the faith that I can handle this but somedays I don't feel that way.  I purposefully don't telll my sister or my friends how I feel as I don't want to hear "maybe you should put him in nursing home."  That's not the answer.  What I need is some emotional support from my family and friends, a phone call asking me how I'm doing once a week.  But I seem to be the one checking on others.  Thank you for letting me vent.  I know many of you can relate! 

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@lb50258545 wrote:

I will be so glad when this holiday is over.  I have no Christmas spirit and I feel like all I do is end up crying.  My husband has lost his ability to walk, is having difficulty sitting up and is sleeping so much!  I'm doing the best I can but my heart is breaking.  I have nothing to celebrate.  And then this evening my brother tells me he's coming up for Christmas.  That should cheer me up but honestly it doesn't, it feels like more work.  And then I feel I should go buy him a Christmas gift which I have no energy to do.  If I hadn't asked him today if he was coming up I think he would have just pulled into the driveway on Christmas.  I know these circumstances will change, what I don't know is when, how and what next.  I would love to have the faith that I can handle this but somedays I don't feel that way.  I purposefully don't telll my sister or my friends how I feel as I don't want to hear "maybe you should put him in nursing home."  That's not the answer.  What I need is some emotional support from my family and friends, a phone call asking me how I'm doing once a week.  But I seem to be the one checking on others.  Thank you for letting me vent.  I know many of you can relate! 

________________________________

I'm sorry you're feeling such a burden. How to lighten it. That's what i'm wondering. Random ideas in no particular order: Agree with your brother not to exchange gifts this year, that your presence together is the gift. Or perhaps a game of Scrabble. That would be the gift.
Find a good therapist and go there once a week to dumb. Her or his job is to listen to you, supportively, but also with an eye for ways in which you might self-sabotage. You're worth it.
Get a therapeutic massage.
Start a gratitude journal. I know, what a crock, at least when you're feeling this empty. Might help though. because oddly enough, there's always ONE THING you can find to be grateful for. the best parking space in the lot. the warm hat you still have. a lovely sunset. a silly cat video.
rent a funny movie?
we're here. we're grumpy too sometimes. keep sharing. christmas will be over soon.
jane

 

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Hey Jane, Thank you for your response! Christmas is over, the holiday had very minor bumps, the visit with my brother was GREAT. I'm so glad he came up! We worked together in the yard, the kitchen, watched a good movie and talked! Life doesn't get any better! My husband was able to visit a bit as well, I'm very grateful for the time we all spent together! '
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@lb50258545 wrote:
Hey Jane, Thank you for your response! Christmas is over, the holiday had very minor bumps, the visit with my brother was GREAT. I'm so glad he came up! We worked together in the yard, the kitchen, watched a good movie and talked! Life doesn't get any better! My husband was able to visit a bit as well, I'm very grateful for the time we all spent together! '

Hooray! It sounds like a lovely visit, refreshing, fun and relaxing. A stronger connection with your brother. As you can say, life doesn't get any better. SO GLAD. And thanks for sharing your joy with us.

 

Jane

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Hi LeeAnn, I don't have any answers for you but I wanted to let you know I'm sending you lots of positive energy and prayers. I too am caring for my husband 24/7 his illness is completely different but I understand the sense of isolation and frustration. Have you considered talking to his doctor, asking for help with his care. His paranoia might be related to his cognitive disorder and the doctor may have a medication that would help that. It certainly doesn't hurt to call and ask. You need to be heard and get some support! Good Luck! Keep writing I agree it is tremendously helpful to write in this space, it's cathartic! Take Care!
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I have been taking care of my husband, who was first diagnosed with "induced dementia" 8 years ago. It was a sudden onset following a routine neurosurgical procedure. Although I have been spared the dilemmas of dealing with discouraging driving and  his dealing with finances, since it was obvious he was no longer capable of managing such tasks, the catastrophic onset gave me no chance to learn what to expect or learn communication techniques. I find myself isolated, angry and frustrated. I am now retired so I can watch him 24/7, and it is that very constant burden that becomes overwhelming. Right at this moment he is pacing, which is the only activity he engages in other than sleeping and eating. There is no possibility of conversation or meaningful communication. I have not been able to find any activities to distract him or occupy his interest. The pacing is annoying, like Chinese water torture. I am sorry for the extremely negative tone of this posting- it's not the real me, but it is where I am right now. I had attached a video of his behavior,to another site which I made to obtain input on whether others had experienced it. One woman replied and described the same behavior in her father- it was so comforting to know it was "normal" in dementia behaviors. Peace to all of you.

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@TerrieCNM wrote:

I have been taking care of my husband, who was first diagnosed with "induced dementia" 8 years ago. It was a sudden onset following a routine neurosurgical procedure. Although I have been spared the dilemmas of dealing with discouraging driving and  his dealing with finances, since it was obvious he was no longer capable of managing such tasks, the catastrophic onset gave me no chance to learn what to expect or learn communication techniques. I find myself isolated, angry and frustrated. I am now retired so I can watch him 24/7, and it is that very constant burden that becomes overwhelming. Right at this moment he is pacing, which is the only activity he engages in other than sleeping and eating. There is no possibility of conversation or meaningful communication. I have not been able to find any activities to distract him or occupy his interest. The pacing is annoying, like Chinese water torture. I am sorry for the extremely negative tone of this posting- it's not the real me, but it is where I am right now. I had attached a video of his behavior,to another site which I made to obtain input on whether others had experienced it. One woman replied and described the same behavior in her father- it was so comforting to know it was "normal" in dementia behaviors. Peace to all of you.


Hi Terrie,

It sounds like torture.

I've never heard of 'induced dementia'. It sounds like a brain injury and there is a specific kind of rehab/treatment for that. There is also medication that calms damaged brains: several different kinds, depending on the individual person and the kind of brain disease we're dealing with. People with traumatic brain injury, stroke, and various kinds of dementias, all tend to experience 'agitation' in various forms, as well as sleep disorders, 'sundowning' (upset behavior the minute the sun goes down) and other problems. 

I'm wondering if has seen helpful physicians. I've worked as a social worker in neurology floors, oncology, and in geriatric community settings. Now i work in home hospice, and every single dementia patient has some kind of agitation at some point. 

I'd like to suggest that you consider finding a second and perhaps third opinion on what would help him. Any of the following might be helpful: 

* a neurologist

* a psychiatrist who specializes in geriatrics and dementia

* a geriatric primary care doctor

 

Is he a veteran? You could get most of this care for free at a VA if so.

 

Just a thought. I am so sorry. I am worried about YOU.

Keep sharing?

Jane

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Just found your response to my post- so appreciative of your time.You are correct, it is essentially a brain injury, but so many of the behaviors are similar to Alz I am wondering if that is also going on. He has been evaluated by neuropsychologists, and followed by a neurologist, but little assistance in coping. So grateful for input from other caregivers- the real experts!
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