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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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Hi Mary,

 

My name is Patricia, I can relate to your situation, my husband fell and suffered a traumatic brain injury 11 years ago and as a result has dementia which seems to get worse as the years go on, he at one time was a career artist (painter) and musician. he doesn't do either now, He just sleeps and watches TV mostly cartoons. Its hard to carry on a conversation with him as his cognitive skills are so diminished. I work part time 3 days a week for about 4-6 hours a day. I am 67 and he is 69. It is a lonely existance at times, it does make one feel very alone and I don't think anyone can possibly understand unless they have experienced it. In addition to the TBI, my husband also has multiple health problems, he has 6 stents, atrial fibrillation and has a suprapubic catheter. It is difficult for him to get out so about the only place we go is to Dr. appts. .I do go out to lunch and an occasional concert with friends sometimes but not too often. I am a Christian and my faith is what really keeps me grounded and keeps me at peace most of the time, without that, it would be extremely hard to bear but with God nothing is impossible to go through.

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i was just wondering if someone knows anything about getting paid for my fiance in missouri which is where im currently located she has a artifical hip and keeps falling and tripping she isnt able to dress because of her back or put shoes on etc she is gona have surgery soon and she was ina cast  for four yrs when born so i want to take care of her here at home if anyone can help me how do i get paid to do that i appreciate it

 

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@lm2585916 wrote:

i was just wondering if someone knows anything about getting paid for my fiance in missouri which is where im currently located she has a artifical hip and keeps falling and tripping she isnt able to dress because of her back or put shoes on etc she is gona have surgery soon and she was ina cast  for four yrs when born so i want to take care of her here at home if anyone can help me how do i get paid to do that i appreciate it

 


On getting paid: look up her zip code on www.eldercare.gov and call the agency that appears. Ask if Missouri is a state which allows loved ones to be paid to take care of a family member (you ain't married but you might as well be.)  Only certain states participate.

 

Also, find a social worker, any social worker, who's part of the team at the place she's getting surgery or at the rehab center. Pick her brain (there are so few male social workers in long term care that i don't even bother using the male pronoun.) Social workers are a free source of information. Use them.

 

Jane

a social worker

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Hello,

This is my first post. I too am taking care of my husband for over a year. Our situation is different from the few posts I just read. I am 51 and he is 55 and has advanced Prostate Cancer that is now in the bone. He has tumors all down his spine and skull and hips. He was diagnosed in 2009 at the age of 49.

I quit my job in late October of last year to be with him. He has gotten weaker and weaker and has spent alot of time in the hospital since then. We live 35 miles from a hospital so that sucks.

If I  wasn't home he would not eat as he is too weak to cook. He has recently fallen 3 times. I did buy him a wheeled walker recently which has helped tremendously!

We have no children. I have no help. I do pretty good but there are times I feel  like I can't hardly take it anymore! I don't want to lose him! But I know I am going to. Worried about finances after he is gone. 

REally need to find an online job. Esp with winter coming on before long. I need something to do while he is sleeping. Which is alot!

Thanks for letting me vent!

Dawn

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@df892 wrote:

Hello,

This is my first post. I too am taking care of my husband for over a year. Our situation is different from the few posts I just read. I am 51 and he is 55 and has advanced Prostate Cancer that is now in the bone. He has tumors all down his spine and skull and hips. He was diagnosed in 2009 at the age of 49.

I quit my job in late October of last year to be with him. He has gotten weaker and weaker and has spent alot of time in the hospital since then. We live 35 miles from a hospital so that sucks.

If I  wasn't home he would not eat as he is too weak to cook. He has recently fallen 3 times. I did buy him a wheeled walker recently which has helped tremendously!

We have no children. I have no help. I do pretty good but there are times I feel  like I can't hardly take it anymore! I don't want to lose him! But I know I am going to. Worried about finances after he is gone. 

REally need to find an online job. Esp with winter coming on before long. I need something to do while he is sleeping. Which is alot!

Thanks for letting me vent!

Dawn


Hi Dawn, 

Vent early and often, is what i say. Glad you posted.

 

The hospice suggestion is a good one, actually. And not because he's at death's door. People have all kinds of misconceptions. In truth, hospice will mostly likely extend his life, believe it or not, and most certainly, improve its quality, and support you. It's almost always covered by health insurance. Health care comes to YOU, in the form of a nurse who comes at least weekly, in the form of medications delivered to your door, and a medical director if needed (an MD). You get a social worker, a chaplain if you want (and none of them proselytize), and as another member of this discussion group mentioned, volunteers. Also, a home health aide who's job is pretty much bathing. Gently and thoroughly, in bed or in the shower, but helping your husband carefully, painlessly get clean.

 

Hospice is a rare gift in a health care system that is fragmented and doc centered instead of patient centered. And when there is no cure for the cause of the shortened life, it is the path to best possible quality of life.

 

best of luck to you and to him,

 

jane

 

 

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Hi Dawn,
If your husband has been placed on hospice which would be done through his doctor you can get volunteers to come in a sit with him and that could provide you with some time away. Has his doctor talked to you about hospice? If not you can bring it up. A support group might be a great help for you as well! Thinking of you and sending you and your husband lots of prayers and positive energy!
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Dear Dawn,

You NEED HELP!  Where do you live?  AARP offers many resources for caregivers.

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A lot of people don't like outside help...so I don't push my advice and what I learned on no one....***POST EDITED TO REMOVE EMAIL ADDRESS**

......if I could be of any help to you...just shoot me a texts

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If yall don't mind can I share a few things with yall that I have learned....I'm taking care of my wife now...she.had her leg removed 2012 and then a knee replacement the same year and on top of that she is a bad diabetic...but she is the easy one...I been caring for members of my family for about 25 years...so I know I can tell yall some of the things that will help you out.....I saw one of you post I could ask a friend and they would relieve me...don't do that...you stay shut up in that house all the time being the care giver...when you get a break and I gonna tell you how....you gonna want that friend to go out to eat or whatever with you...remember you been shut up in the house caring for your loved one...you need some adult conversation...and don't feel bad for taking a break...if you're not healthly or you start to lose it up stairs....then you're doing nobody any good....HA HA lol....now I have your attention...it's easy and you deserve to be taken care of too
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@lb5719 wrote:
If yall don't mind can I share a few things with yall that I have learned....I'm taking care of my wife now...she.had her leg removed 2012 and then a knee replacement the same year and on top of that she is a bad diabetic...but she is the easy one...I been caring for members of my family for about 25 years...so I know I can tell yall some of the things that will help you out.....I saw one of you post I could ask a friend and they would relieve me...don't do that...you stay shut up in that house all the time being the care giver...when you get a break and I gonna tell you how....you gonna want that friend to go out to eat or whatever with you...remember you been shut up in the house caring for your loved one...you need some adult conversation...and don't feel bad for taking a break...if you're not healthly or you start to lose it up stairs....then you're doing nobody any good....HA HA lol....now I have your attention...it's easy and you deserve to be taken care of too...

You've got my attention!  I have 'lost it upstairs'!!! You are so right that you have to get a break yourself, get out of the house and be with a friend or your favorite cousin and do something DIFFERENT.  my favorite escape is to go to a movie with someone. I'm absorbed into someone else's world view for about 2 hours. Plus i love popcorn.

 

You sound like the designated family member who cares for everyone else! In my work as a geriatric care manager, i see families like this all the time: one or two people get the bulk of the caregiving duties. Usually daughters and wives. And here you are, a husband, caring for your wife. Does she have a prosthesis so she can walk on crutches? Or is she in a wheelchair?  

 

What other advice do you have? I bet you are a veritable font of wisdom, given how well you heard the vow, "in sickness and in health."

 

Jane

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I agree wholeheartedly that taking a break is vitally important to survival!  I have made sure I get out daily and I meet with friends consistently.

What I find very difficult to deal with are the fluctuations from one day to the next.  I realize everyone responds differently to treatments, medications and the disease process.  It just breaks my heart when he just wants to sleep all day or has difficulty standing, or any behavior change that I wasn't expecting.  Now he's having difficulty bringing his legs up to the bed to lay down, is crying out in pain and can't tell me what's wrong or what's hurting.  My solution is to use the lift to get him into bed.  Anyone have any other suggestions to help him get his legs into bed?

Thank you for your support, I trully appreciate it!

   

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I had a bit of insight tonight I wanted to share.  I think part of the reason I get anxious and upset with my husband is I want him to be able to do the same thing every time.  You know get up from his chair easily, walk safely, get into bed without a problem and it occured to me that with his disease consistency is not the norm!  He's more likely to change from one situation to the next and I need to go with the flow and NOT have expectations. So I need to keep this in mind.  He's doing the best he can and so am I.  But I also need to remember every situation is different and who knows what will happen.  As long as we are both safe it's OKAY!  It doesn't have to be perfect.  If he needs lifted, okay!  That's why I have the lift!  Everyone of us needs more help somedays more so than others!  Thank you for reading!

 

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 Hello,

  I have found this group through AARP. I have been caring for my wife since 2009 when she had her first seizure from a benign brain tumor. After six weeks of radiation and years of anti-seizure medicine she has been diagnosed with severe dementia and Parkinsonโ€™s. Last year I โ€œretiredโ€ to take care of her and I have been able to handle it. However, lately I have noticed that I am increasingly frustrated and angry. The anger is what worries me the most. I am not ordinarily an angry person.

  People we know will ask how she is doing. Initially I would tell them but I noticed they became uncomfortable. So I have taken the habit of saying she is fine. I see now they donโ€™t really want to know because they donโ€™t know how to fix it but wanted me to know they are concerned.   

  But like others on this list there is a feeling of isolation, to be able to share with those that would understand. I hope to hear from others in the groups. Thanks.

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Good Evening All,

I was thrilled to find this site.  I have read some of the posts and can relate to many of you and your frustrations!  The anger is scary, the frustration overwhelming and the sadness extreme.  I am exhausted, frustrated, scared, overwhelmed and wishing my beloved would die.  I have been caring for my husband for 7 years now, with the last 2 years being total care.  I am a registered nurse and worked in geriatrics with folks who had dementia for over 23 years.  I thought I knew what to do and how to handle it.  But then my husband was diagnosed with dementia, Lewy Body Disease with Parkinson's symptoms.  I so want to make things  right for him.  And what's worse is I keep pushing him to walk and stand up.  Even though I have the equipment I need to safely transfer him. It breaks my heart when he can't stand up with me.  We have no family to help.  Our friends rarely come to visit.  The isolation is another problem I struggle with.  Placing him in a nursing home is unthinkable to me.  I know too much about nursing homes and the staff and how people are treated.  I feel I should be able to do it all, so asking for help is difficult and frustrating for also.  I keep trying to figure out what's the right thing to do, how can I make things better for us, what's the next step.  Thank you for reading.  I appreciate your support! 

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Hi. I am very very new to this forum. I am in an very underrepresented age group. My husband is 53 and has been on disability for 3 years due to Type 1 diabetes complications. We will celebrate 20 years of marriage this year and I am trying to find a way to be his caregiver full time without financially crippling us.
I went on FMLA for the past 4 weeks after two ICU hospital stays. He has definitely improved having me home. He has actually thrived. Our doctor was pleased. My employer was not too pleased.
I am a professional woman who realizes that when I have a team member out on FMLA- the last thing I want to do is add to that family's stress. Yet today, many employers, both profit and nonprofit will do just the opposite - compound the stress. Do not define key employee. All employees are key and essential to operations. Do not place a price on an employee's family members head. Employees who are care givers, and we all are, have so much on their minds, should not have to worry about their jobs, but we do.
many will be thrown nto a tax bracket that taxes disability at 80%. In our situation, Medicare does not cover the durable medical equipment that has brought the greatest peace of mind and that I attribute to a 99% reduction in hospitals stays. should I decide to work part time, we will not be able cover those costs especially when we hit the infamous donut hole. We hit that in April and insulin alone was 1000! We are fortunate in that we do not have debt except for one car payment. We do not own a home.
The task list doesn't cease with care. Every piece of mail regarding care coverage must be reviewed. The coordination of benefits requires review because let's face it, you will receive a bill that you really don't owe for some service you didn't know your spouse had. You become a researcher looking for help of any kind with scripts, DME or whatever.

My husband prefers to have me be here and not an agency. It seems like a vicious losing battle to give him what I feel is his right. I took a vow before God 20 years ago and like so many of you in this forum, I plan to honor it. It's not an easy road. it can be thankless and you can be made to feel inadequate. you are not.

If anyone has any words of wisdom as I return to the office Monday, I'd love to hear them. My plans include to work from home but it will take some time to make that transition as I start seeking potential prospects. I do know he's worth it and learned just recently that taking time to spend with someone brings tremendous fulfillment and healing. I spent my dads last day with him in September, not knowing it would be his last. It was the best visit I ever had in a relationship that was estranged from my birth up till the past few years. No one was available to take him for a treatment. I asked him to let me take him thinking he'd say no (hour drive and he was always very private). He agreed without hesitation. We had the best visit ever and I heard the words "I love you. I am very proud of you." That night he passed away. I am at peace and forever thankful I spent that time with him. It brought so much healing and closure.
I pray each of you receive a special blessing today because your stories of stamina and perseverance blessed me. Thank you so much for being an inspiration.
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Hi this is my first time on this site. I know the frustration you feel. My husband was diagnosed in Dec with Diamentia, however I've noticed it lond ago. I'd tell the primary doc he needs a happy pill. He is increasingly verbally abusive which has been very hurtful. I am in counseling to deal with this which has helped. Almost every time I leave the house he thinks I'm cheating get on him. I can leave him for periods of time not like most of you and it is freeing. I know this won't be for long. I already took care of my mother with Alzheimet's and Parkinson's. I really didn't want to go down this road again. He can get confused and curse at me. The doctor told me it's like reasoning with s drunk. I keep that in mind, while trying to teason things out. Rather then get in conflict I go in my bedroom or walk away. My husband is 12 yrs older than me. I've raised two daughter, survived my ex commuting sucicide, taking care of and being my Mom's support for almost 30 years with my Dad having a stroke and paralyzed for 10 yrs. would ask my Mom how she did it, she'd say I just deal with it as if it were a job. I however don't want this! Don't want to deal with it again. The verbal abuse can be too much. Jesus is my comfort and strength. I just know some day will be my time and things will get better. And this too shall pass! I don't look forward to things getting worse and I feel for all of you and know how you feel. My husband will be 80 soon and I pray for strength every day!
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@jg28184116 wrote:
Hi this is my first time on this site. I know the frustration you feel. My husband was diagnosed in Dec with Diamentia, however I've noticed it lond ago. I'd tell the primary doc he needs a happy pill. He is increasingly verbally abusive which has been very hurtful. I am in counseling to deal with this which has helped. Almost every time I leave the house he thinks I'm cheating get on him. I can leave him for periods of time not like most of you and it is freeing. I know this won't be for long. I already took care of my mother with Alzheimet's and Parkinson's. I really didn't want to go down this road again. He can get confused and curse at me. The doctor told me it's like reasoning with s drunk. I keep that in mind, while trying to teason things out. Rather then get in conflict I go in my bedroom or walk away. My husband is 12 yrs older than me. I've raised two daughter, survived my ex commuting sucicide, taking care of and being my Mom's support for almost 30 years with my Dad having a stroke and paralyzed for 10 yrs. would ask my Mom how she did it, she'd say I just deal with it as if it were a job. I however don't want this! Don't want to deal with it again. The verbal abuse can be too much. Jesus is my comfort and strength. I just know some day will be my time and things will get better. And this too shall pass! I don't look forward to things getting worse and I feel for all of you and know how you feel. My husband will be 80 soon and I pray for strength every day!

Hi JG,

 

You do not need to take abuse from your husband, whether or not it is part of his dementia. That is unacceptable behavior. 

 

What a lot you've had to cope with in your life over long decades, too. You are a survivor. So glad counseling is helping you!

 

So, what to do about it? About the two of you there stuck in the house? Does he have adult children from a previous relationship? Or any siblings or nieces or nephews? Anyone out there who'd spell you, pitch in, give you a break?

 

How about talking with an eldercare law attorney to see what you can afford in the way of support. I'm thinking, why not look into a dementia care home for him? You'd find a good place. You'd visit him often. 

 

Think about it, would you?

 

Jane

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Hello,

 

Hello All!

 

Caretaking can be very stressful, we have also experienced this in my family. Hopefully what I'm writing about may help. I am volunteering as a summer Intern in the Boston headquarters office of Road Scholar, a wonderful non-profit for older adults interested in lifelong learning and travel. I am working with the Impact Grant Committee to review and award financial assistance applications for Road Scholarโ€™s educational travel programs, including a new grant just for Caregivers. The grant will help you offset the cost of substitute respite care to attend a Road Scholar program and experience learning adventures that can provide a much-needed rest from the emotional and physical demands of your caregiver service. While volunteering here at Road Scholar, Iโ€™ve learned about the healthy benefits of lifelong learning and the camaraderie of group educational travel. I think these health benefits are especially important to caregivers so Iโ€™m helping get the word out about this unique respite opportunity. You can find more information and apply here: to http://pdf.roadscholar.org/educational-travel/scholarship/rs_grantapplication_caregiver_feb15_final..... If you send in an application before the end of the summer, Iโ€™ll probably be reviewing it so I wish you the best!  -Shoshana

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Hello, 

   I am in a similar situation, I have been caring for my husband for 10 years.  He is legally blind from Diabetic Retinopathy, has had 10 mini strokes in the last 8 years and now he has Parkinson's.  We were able to work out a system of me having things for him while I go to work, but now with the 

Parkinson's it is much more diffucult.  One day my husband decided to take a shower while I was at work and he flooded part of the house. He has also fallen.  I installed cameras in different areas of the house to check on him during the day.  I have been missing a lot of work, I have 28 years with the company and I am not eligible to retire for 3 more years.  I cannot just quit or I lose my pension.  I am in the process of trying to set my husband up with an adult day care, but it seems the wheels move slow and I have exhausted my vacation time and am using my sick leave as I earn it and have to take days off without pay.

My job is also very stressful, they are somewhat verbally sympathetic but their actions are not.

I am shy and have trouble accepting help from a friend that has offered.  My brother has helped me

a lot but he is older and has his own medical issues. I am considering going to my Employers 

Employee Assistance Program, but sometimes I feel sad and alone!

Linda

 

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@lh9708 wrote:

Hello, 

   I am in a similar situation, I have been caring for my husband for 10 years.  He is legally blind from Diabetic Retinopathy, has had 10 mini strokes in the last 8 years and now he has Parkinson's.  We were able to work out a system of me having things for him while I go to work, but now with the 

Parkinson's it is much more diffucult.  One day my husband decided to take a shower while I was at work and he flooded part of the house. He has also fallen.  I installed cameras in different areas of the house to check on him during the day.  I have been missing a lot of work, I have 28 years with the company and I am not eligible to retire for 3 more years.  I cannot just quit or I lose my pension.  I am in the process of trying to set my husband up with an adult day care, but it seems the wheels move slow and I have exhausted my vacation time and am using my sick leave as I earn it and have to take days off without pay.

My job is also very stressful, they are somewhat verbally sympathetic but their actions are not.

I am shy and have trouble accepting help from a friend that has offered.  My brother has helped me

a lot but he is older and has his own medical issues. I am considering going to my Employers 

Employee Assistance Program, but sometimes I feel sad and alone!

Linda

 


Dear Linda,

 

I know you posted over a month ago, but I'm catching up, and this jumped out at me. I'm feeling burdened on your behalf, just reading what you've written!  I hope you did go to your EAP (Employee Assistance Program) as I think those folks can steer you towards help. Here's some thoughts i have. (i work as a medical social worker with folks who have all kinds of medical problems and disabilities.)

 

1. Go to the EAP. Get some support for yourself.

2. Find out which 'area agency for aging' serves your home: www.eldercare.gov and type in your zip code. Whichever community agency comes up, it is available to you for free for services to help you and your husband. Sounds like your job is pretty demanding, but if you can get a social worker on the phone and pick her brain, you might get some concrete help

3. Does your husband where a 'lifecall' button around his neck or on his wrist? if he falls, he can press that, and avoid lying on the floor for hours, or flooding the house. They cost about 30 bucks a month or so.

4. Have you tried a Parkinson's support group? Dunno if there's one anywhere near you but perhaps you could both go. 

5. Perhaps most importantly, look for some funds to help him at home with home health aides. One source is the Veteran's Administration, if he's a veteran.  http://www.benefits.va.gov/pension/aid_attendance_housebound.asp.  It takes a while to get, and of course there is paperwork to apply but it's a huge help once it's in place.

6. Talk to a financial advisor or an eldercare attorney and find out whether you should liquidate some retirement money, or get a reverse mortgage, or SOMETHING to tide you both over for 3 more years, to hire help for him. think outside the financial box. 

7. Lastly, enlarge the caregiving circle if you can. Recruit helpers, volunteers, members of his Lodge/ VFW/ former job/ bridge club/ neighborhood buddies.... Family? Cousins? Are there free services in your county? Friendly visitors?

 

Ask. 

 

I'm sorry the burden is so heavy and the stress is great. And here i am making more suggestions. But dang it. You need some solutions, some help, some buffer. 

 

I hope at least one thing gave you an idea to help you....

 

Please catch us up on how your'e doing, and how he's doing. Please forgive my tardiness in replying to your post.

 

Jane

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I still have a hard time talking about this. My husband had a cerebral hemorrhage at the age of 52. He lived 20 years after that. He was able to function and to do some things on his own but as the years past he became more and more dependent upon me. I do not regret the help I had to give him. I know he would have done the same for me. He past away 6 years ago, we had been married for 48 years. We have two sons that are an active part of my life. The storm will pass. Better times are ahead. I didn't think so either but you have to have faith. My faith is what kept me strong. I am now enjoying things and my younger son's wife just presented me with a granddaughter 9 months ago. I know how hard things are for you. There were some very early mornings where I would just go outside and sit on the patio in our backyard and cry. After reading your post, I just felt like I wanted to say something that might help you. Talking to someone that had been through it.

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The posts on here reveal dire situations that are extremely difficult.  I have been caring for a family member for over 27 years (cerebral palsy) and as time goes by it is increasingly physically and emotionally draining as I am caring for him alone.  Looking ahead I see my future without happiness....I continue to search for a place where I have support.

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@SIMPLEGAL wrote:

The posts on here reveal dire situations that are extremely difficult.  I have been caring for a family member for over 27 years (cerebral palsy) and as time goes by it is increasingly physically and emotionally draining as I am caring for him alone.  Looking ahead I see my future without happiness....I continue to search for a place where I have support.


Simplegal, my  heart goes out to you. Goodness, 27 years is a long time. Why do you have to care for him, alone, into the future?

 

A future without happiness?

 

Can we think of alternative futures, together? For both of you?

 

Jane

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My first time on this site.  My husband was diagnosed in January of this year with early onset Parkinsons stage 2.  He will be 50 in June.  He dismissed stage 1 as oh its my back from when I broke it sledding with the kids when they were young.   We have 3 children who live at home. Our oldest is our only daughter who is 21 and in college.  Our middle is a 19 and plans on college soon, our youngest is 16 and still in high school.  He has always been a very active person, teaching Martial Art all over the world.  He now falls when walking, his speach is very soft, I don't hear well from ear infections as a child, when he is tired his speech slurs.  If he is really off I feel like I'm taking care of a 80 yr old.  I have to open the car door for him, help him into the car.  On those off days I get up at night to walk him to the bathroom,  this has been such a hard tranistion for both of us.  As I read the other post it scares me, how many years will I be doing this.  On good days you don't see any symptoms and we can pretend just for the day, it doesn't exist. We know we will have to sell our house and move, this part doesn't upset me as I wanted a ranch anyway,  I'm starting arthritis in my knees.  So many changes so fast, I took my first full time job since we had children just 2 yrs ago.  So now I'm working full time, taking care of him and the house.  Yes our children help, the 2 oldest do have jobs also so they are gone alot.  He is still working at this point,  but has missed alot of work the past 18 months.  He was missing work not feeling well before he was diagnosed.   A good friend has suggested a support group but there are no PD suppport groups anywhere near Cincinnati,  OH.  I know I'm rambling but there is so much to say and you all understand what I'm saying.  I feel like our dreams are crushed of what life as empty nester was going to be.  He was in denial but has learned to accept the diagnosis but not his limitations,  he pushes himself and when he does he has 1 to 2 off days.  I've been feeling depressed these last 2 weeks, life is so quickly so different. 

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Hey there. I'm going to reply to your post where you started a new thread. See you over there.

 

Jane

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My husband had a wreck back in 2003 his knee and ankle got really messed up he was a truck driver for 25 years and the dr told him he would never drive again so that put him a the depression in n out bipolarand schizophrenianow he's talking about 14 medications he can not remember anything and he falls alot he has had 6 surgerys and will have to have more knee surgerys every year i cannot every get a job to help with the bills he is disabled so i understand how hard it is to be a caregiver i have been told i could be paid for taken care of my husband if anyone knows any informationthat might help us please let me knom  God Bless Everyone

 

 

 

 

 

 

 

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@ls71263421 wrote:

My husband had a wreck back in 2003 his knee and ankle got really messed up he was a truck driver for 25 years and the dr told him he would never drive again so that put him a the depression in n out bipola rand schizophrenia now he's talking about 14 medications he can not remember anything and he falls alot he has had 6 surgerys and will have to have more knee surgerys every year i cannot ever get a job to help with the bills he is disabled so i understand how hard it is to be a caregiver i have been told i could be paid for taken care of my husband if anyone knows any information that might help us please let me knom  God Bless Everyone

_______________________________

 

I'm so sorry that this terrible accident happened to both of you (he was injured and your life was radically changed, too). It's been a dozen years now, hasn't it?  Here are some things to look into:

 

* is he receiving social security disability?

* are you eligible for medicaid? You can get paid to be his caregiver in some states, if he receives medicaid.

* is he a veteran? there are all kinds of programs for vets and their caregivers, and the problems do not have to be combat related.

 

Let's start there. Write back,okay?

 

Jane

 

 

 

 

 

 

 


 

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One week ago my spouse , (76 years old) was admitted to hospital for 4 days and released home with vague diagnosis of " cva" he was starting to have some confusion so we were told he was having sundowners syndrome and being home would make it better. No diagnosis of dementia or if a stroke caused this!
Day after he got home he started having leg weakness and now needs a walker and that is not safe. He can barely feed himself , doesn't want to eat and looks at me blankly frequently. It takes lots of instruction to just get out of his chair etc, etc!!
Sometimes he seems like his old self( especially when Drs ask questions and if friends visit. Other times he has no clue We don't have a diagnosis ...this was sudden and I am already so stressed I don't know what to do! Haven't had neuro follow up due to inclement weather. ....maybe tomorrow! I hope!!!! Does anyone know if this is dementia or Alzheimer's or from a stroke?
I am lost. Friends offer help but they can't really . I can't leave someone who needs help to urinate or just get out of chair safely ,,!!!!!
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First time on this site, I hesitate to do this now because I and my husband are very private people and hesitate to share our problems with anyone.  He suffered a brain bleed five years ago as of Jan. 30th.  In Dec. of 2014 he was admitted to hospital for 1 week as he again became confused and could not answer simple questions or state his name, day of week, etc.  Neurologist diagnosed him as having TIA and discharged him placing him back on blood thinner which had been discontinued when brain bleed occured.  In Janury 2015, he was admitted to hospital again, this time the neurologist and other physicians said he did suffer a stroke in Dec. of 2014.  They did more tests, scans, MRIs and nerve test.  He has not recovered from this as well as he did the brain bleed.  He walks with a walker for the past five years.  His speech and memory has not recovered as it did when he had the bleed. He suffers from diabetes, afib, high bp, and slight heart failure.  This is all medicated to control symptoms.  I have said all this to ask a question, has anyone found or used a toilet cleaner to use after a bowel movement.  I researched and found a "comfort seat" that is supposed to clean and dry someone.  I need information from someone that has used this to see if it is beneficial and can actually clean someone who is handicapped and is unable to perform this task by themselves.  He had therapy for two weeks in the hospital and home health care for approx. 6 weeks.  Some improvement,  but he still has to have help with his personal needs and cannot be left alone due to not being able to clean himself after bowel movement.  Sorry this is so long, but I hope someone can answer my question.  Thanks

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@cr84759833 wrote:

.... Has anyone found or used a toilet cleaner to use after a bowel movement.  I researched and found a "comfort seat" that is supposed to clean and dry someone.  I need information from someone that has used this to see if it is beneficial and can actually clean someone who is handicapped and is unable to perform this task by themselves.  He had therapy for two weeks in the hospital and home health care for approx. 6 weeks.  Some improvement,  but he still has to have help with his personal needs and cannot be left alone due to not being able to clean himself after bowel movement.  Sorry this is so long, but I hope someone can answer my question.  Thanks


I've often wondered about a 'bidet' as a solution to just the problem you mention here: the inability of a disabled person to wipe themselves adequately following a bowel movement.   What you could do is find an expert in renovations for disabled people, Certified Aging in Place, or CAP: http://www.aarp.org/home-garden/home-improvement/info-03-2004/caps.html   And then ask their advice: what bidet product do they recommend?

 

Please share what you've learned and post it as a new thread, with some title like: "A solution for incontinence" or something like that, so folks can find it.

 

You are a loving wife and caregiving for your husband, who's had a hard time of it medically. How are you doing?

 

Also, i really don't believe that sharing issues and coping tips on a caregiving forum is a breach of privacy. The more we help each other, the less of a burden it feels like, i think.

 

Thanks for writing and sharing. 

 

Jane

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