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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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Hello Everyone,

    I am taking care of my hubby of 40 years. He has Hepatic Encelapathy, he's in end stage liver failure. He has been a heavy beer drinker for 35 years. He's always been pretty self centered (to say the least), but now, it's all about HIM. The disease is slowly but surely killing him, at this point, I'm not sure if it's going to take me first.  . 

   His b/p is dropping, to the point it has gotten so low he's gone into acute renal failure, twice. Hospice has become my lifesaver. An aide comes out 3 times a week to help bathe him. He had refused to bathe for over 2-3 weeks at a time, the aide coming put him on a regular schedule. Our Hospice nurse comes out 3 times a week, (look at me, I've claimed his nurse as ours), Hospice has been a life saver!!! I cannot stress just how much of a difference they have made, all to the good. 

   He gets "confused" (read crazy as a loon) He was driving, I literally had heart attacks every time he would stagger to the car or truck. They along with our family physician and a friendly local police officer, put a stop to that. He was falling constantly, my son had had to put his own life on hold to come live with us, just to help me, he was picking hubby up out of the floor, off the deck, off the ground, many times a week.  The peeps helped get himto using a rolling walkalator. And helped to get his meds adjusted to help with the balance. My son was able to move back out, but he comes by 3-6 times a week. I am just so thankful I have my son!! He is my hero, my rock, he is the one who has to listen to me vent, too. He has wide shoulders, at times he needs them.

    He has realized he is dying. He checks his b/p 10-12 times a day, he checks his o2 about the same. Hospice also got him a o2 concentrator. Some weeks I can run to town, pay bills, buy groceries, etc. Others, I have to get my son to come hubby sit. The last 2 weeks, he has been more stable than in months, physically. Mentally, he has been more clear of thought, in the last few days. 

   My hubby, teen age sweetheart, love of my life, has done a 360*, the sweet wonderful man is now a mean selfish monster, I keep telling myself it's the brain damage, but you can only lie to yourself for so long. He is a control freak that has lost control. I see him checking his bp, heart rate, etc and I realize he is scared of dying, yet, he does nothing to ease his fears, his, I'm sure, horrors. I caught myself remarking to him, after he had said something so hurtful,. . "If I was as scared of dying as you are, I wouldn't be picking fights with God." 

   Do any of you have any advice, any helpful hints? I'm so tired physically, and mentally that I'm not sure I'm going to make it. And yes, I know I have no choice except to make it. 

  Thank you!

    

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I'm in the same boat.  Hubby had Parkinson's diagnosed about 6-7 years ago.  Four years ago he had a "widow-maker" heart attack.  That affected his short term memory.  Between PD and the heart attack he lost the ability to figure out how to move his body so most of the day he can't figure out how to get out of a chair.  He can't get in and out of bed by himself so I'm always lifting him - he goes to the bathroom between 1 and 5 times a night.  I never get an uninterrupted night's sleep.  He can't make his own meals.  He can't go to the bathroom by himself and is incontinent at times.  

I also have no family close by (several thousand miles away).  I've had no break in 4 years.  What keeps me sane are my friends, Facebook (I thank heaven for it every day), reading, brief walks with my dog and the bits of time each day when hubby is "himself."  

But it is a very lonely life.  And now I have Stage 1 breast cancer.  My kids will come in and care for me and hubby for 3 weeks while I have surgery and recuperate.  That will be lovely.  I should actually get some sleep for a change 🙂  

Area Agency on Aging used to have a program of respite care and I thought I'd use it for hubby for a week or two.  But it has been discontinued.  And, honestly, if he were in a home of some sort, he would decline even further.

It's hard not to get discouraged.  But we all do what we have to do.  Keep strong!

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I have been caring for my wife, on an increasingly basis, since 2005. It began with caring for her as she battled breast cancer, then her extended recovery from brain surgery, two extended recoveries from lower back surgery, a very lengthy recovery from a botched knee replacement surgery, i.e., after 4 surgeries, she ended up having to have her leg fused (cannot bend her leg) and has essentially lost her mobility (has limited use of a walker; must use a wheelchair most of the time). Subsequently, she was diagnosed with Type 2 diabetes, which eventually led to permanent kidney failure; she receives dialysis treatment 3 times a week (get up at 4:30 a.m. to make 5:30 appt; pick her up at 10:15 a.m.). Has also been diagnosed having progressive dementia; is easily irritated and can become quite nasty and hurtful to me, at times. Bad situation compounded by fact that our youngest son (almost 50 yrs old) has been living with us for almost a year because he lost his job and his credit rating is tanked; he is also an alcoholic who is in deep denial. I find his continued presence very irritating and extremely stressful. Although he has found a new good paying job, he is unable to qualify for a rental apt due to his bad credit rating. Needs to file for bankruptcy but I learned just recently that instead of making monthly payments to his bankruptcy lawyer, he has been spending his money on booze. Needless to say, this revelation really irritated me, so I have given him an eviction date. This situation has caused increased friction between me and my wife since she is unable to recognize his shortcomings and the effect they have upon me. I have been seeing a doctor for depression but his answer has been to place me on medication, which has only served to cause me frequent nausea. I have quit taking the medication and intend to stop seeing this doctor. I think I need professional counseling on how to effectively address my situation, rather than being placed on a drug regimen. Not a pretty picture.....that is for certain. Am willing to give this forum a try. Need to find something that works. Took 2 weeks off in April to recharge my batteries but that relief wore off much to quickly. Have another son and daughter in town but their availability to assist is limited. Try to play golf a couple times each week. My oldest son is pushing me to do volunteer work to break up the routine and relieve the stress.
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Periodic Contributor

Hi winn!  You deserve a medal for persevering in the path of adversity.  Sure has been a long, winding road for you....with no end in sight.  I certainly approve getting another opinion on medication therapy for your depression, but sometimes it's needed.  There are so many meds, not all will give negative side effects.  And good therapists are SO hard to find.  Speaking from experience here.  My husband's health has been declining for the last 10-12 years and now includes vascular dementia.  Most of our responsibilites are now mine.  And my health isn't good either.  I've been on SSDI for 8 years.  So finances are tight, too.  I give you a lot of credit for hanging in there.  So many people ditch the "in sickness and in health" part of their vows when faced with a fraction of what you've had for years.  With the complication of your son.  Addictions are so cruel to the addict (alcoholic) and those around him.  In a way it's a blessing for your wife not seeing the truth.  That kind of stress would surely make her worse.  It's a curse to you, though.  My husband keeps saying we need to be empty nesters.  Our 29 year old son with autism and schizoaffective disorder lives with us.  He's not that bad for the most part but hubs can't deal with him, which makes him anxious hence less controlled behaviors on and on.  Anyway you're not alone, though the circumstances of our spouses issues differ, caregiving is demanding any which way you look at it.

Janet

Contributor

Hi, tonight is my first time on the site. My husband has vascular dementia, which we just found out. He has been having trouble with his memory for over a year now. He does most of his sleeping durning the day. I find myself repeating the same answers over and over. Sometimes it bothers me more than other times. I do have the help of my daughter, thank goodness, but I have a hard time sharing some of my concerns with others. My main concern is his personal hygiene. He doesn't want to take showers, or change his clothes. If I talk to him about it, he says he doesn't understand why I have a problem with it. I've try to tell him, very nicely, that it bothers me because of the smell. I am at a loss on what else to try to get him to bath and change his clothes. I do lay out clean shirts, underwear, etc. for him. If I can smell his pants, I change them out to new ones.
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Hi, jk.  My husband also has early vascular dementia and hygiene issues.  Care for his appearance, cleanliness, etc. have become very minimal.  Very.  Your husband sounds much like mine.  They're about equally stubborn too.  If you find an answer to this quandry please share it!!

Janet

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Hi there,

 

Hm, i'm thinking some sort of bribery... "if you, dear husband, takes a thorough bath, we can _______ [go do something special...] "

 

Do you think he'd be more willing if you hired a male aide to help him bathe, once or twice a week?

 

Can you afford one of those walk in bathtubs to be installed in one of the bathrooms?  Looks like a mini hot tub to me. A little googling and i found this: http://www.homeperfect.com/ariel-ezwt-3048-l-soaker-tubsandwhirlpools.html?ev_pid=ariezwt3048lsoaker...

 

I don't know what it is about bathing, but lots and lots of older people simply lose the desire for it.

 

Does he bathe himself? Perhaps he feels unsteady, and doesn't want you to know?  I think shower benches are a fabulous invention. Like this one.

 

Any other ideas out there, folks?

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I am new to this site.  My husband was diagnosed with Parkinson's in Jan 1999 and did have the Deep Brain Surgery (DBS) in 2013 which helped him tremendously with the symptoms.  He has been using a motorized wheelchair for about two years now and since we have a two-story house, we purchased a chairlift.  That was the best thing we did to get the chairlift.  I got a little resistance because he said he didn't need it but I told him I would order it anyway.    It is very hard to see such a vibrant guy be reduced to being in a wheelchair.  We also purchased a Luggie travel scooter which he uses to get in and out of restaurants and doctors' offices.  It is very stressful for me but working out three hours a day, three times a week has really helped me reduce my stress.  I do the eliptical trainer and weight training.  I told him once that I needed a caregiver vacation and the response was that he needed a vacation from Parkinson's.  So I never got a vacation from caregiving.  My one issue with Parkinson's is the speech.  I can hardly hear him when he speaks and have to ask him several times to repeat himself which causes me a lot of frustration.  It feels very lonely even though I have someone in the house but can't speak to him because he can't respond very well.  I bought him several voice amplifiers but he wouldn't use them.  We have a Panama Amazon Parrot who talks alot is a good companion. 

Yvonne

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This is very new to me.  Talking to anyone in person &/or on line. My husband has had Parkinson's for the last 8 years which got complicated by a bout of pnemonia and a diagnosis of sever osteporosis both of which caused spinal fractures. There are good days and bad days. On a good day my husband of 59 years gets romantic but I have trouble thinking romantically after changing his diapers and/or bedding. No one talks about keeping up a romantic relationship while caring for a love one.

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Reading your post though it isn't recent really struck a chord with me. The last few years have been so difficult for me as well. My husband has Parkinson's, prostate cancer, and diabetic neuropathy and now dementIa, all diagnosed since we married ten years ago. He is now in a wheelchair. We used to have a very healthy sex life. But after dealing with Depends and his poor hygiene, I have no desire. We haven't had a decent conversation in months. I'm lonely and having to learn to deal with it.
Trusted Contributor

Hi jr, I'm sorry it's taken me so long to respond. I understand your frustration with how your life has changed. I too have had to adjust to a loss of intimacy with my husband. But I hug him whenever possible, he usually walks to his chair in the morning with the aide and myself and that's when I hug him. If he doesn't walk and I lift him into his chair I hug when he's sitting. I always tell him when I hug him I Love You! I make a point of touching his arm or holding his hand if I am talking with him. And at night when I tuck him in I always tell him I love him and say good night. I miss holding his hand but I refuse to totally lose our personal contact. Just some ideas. I know it's very difficult, emotionally painful and socially isolating to care of the person you love! I hope things are going better for you! Take Care!
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@jr44263700 wrote:
Reading your post though it isn't recent really struck a chord with me. The last few years have been so difficult for me as well. My husband has Parkinson's, prostate cancer, and diabetic neuropathy and now dementIa, all diagnosed since we married ten years ago. He is now in a wheelchair. We used to have a very healthy sex life. But after dealing with Depends and his poor hygiene, I have no desire. We haven't had a decent conversation in months. I'm lonely and having to learn to deal with it.

So rarely mentioned, and yet so important in an intimate relationship, is the loss of sexuality when one partner is so impaired. That is a real sad loss. I'm just wondering, is there some way in which someone else can bathe him thoroughly and there might be the chance for a little bit of play? Or is that just too much, too hard, or he's just not able to appreciate the effort? Very sad indeed. I'm sorry.

 

Parkinson's has its own kind of dementia. Do you have a good working relationship with his neurologist? i hope so.

 

do you have any help? have you hired some help? do you get a break, ever? is there either a parkinson's group or a caregiver's group nearby that you can attend?

 

Thank you for writing. This is an important topic and it rarely gets discussed.

 

Jane

Contributor

We don't have one. I'm exhausted all the time. After 4 years of caring for hubby 24/7 I don't have the energy to consider being romantic. I'm glad to get through the day. Not very encouraging, is it?
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Hi Grannie Courier,

 

Husband of 59 years? Wow. That is an accomplishment in and of itself.

 

I wonder if there is a way to distract both of you from the drudgery (and embarassment) of diaper changing. Pick some time, when he's clean and you're feeling pretty good, ask him to put baby oil on your back. Just touching each other can feel very intimate and relaxing. A way to connect that isn't too complicated. Or you can rub his feet with lotion while he's lying down on the couch. If all the touching is so 'functional', it's hard to feel cuddly and romantic at all.

 

I wonder if other folks have suggestions?

 

Thank you for sharing your concern. Let's see if other folks have any tips.

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Dear ypgroce, aka wife of man dealing with Parkinson's

 

Yes he needs a vacation from Parkinsons, but...I am so glad to hear you're taking care of yourself by working out. Physical exercise is the best thing you can do for body mind and spirit. I hope you don't give that up, regardless of how tough it is.

 

Has he ever seen a speech therapist? There may be other devices, including a word board, that might be less frustrating for him and more audible for you.

 

Anyone else you can ask to spell you/ keep him company/ accompany him to something fun like a movie/ etc etc.

 

Parkinson's, and all of these illnesses, are family diseases, that's for sure.

 

Keep sharing!

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Newbie

The Well Spouse Association is a national non-profit that supports anyone caring for a chronically ill or disabled spouse/partner.  Please visit our website at www.wellspouse.org for more information.  We have local face-to-face support groups as well as telephone support and an online forum and chat.  We also have a Facebook group:  Spousal Caregivers - Well Spouse Association.

 

We are the ONLY organization dedicated to supporting this group of caregivers with our unique challenges.  We are volunteer run, and are a 501(c)3 non-profit.  You will find that members GET IT!  Check us out.

 

Jan Rabinowitz

Co-President

Periodic Contributor

Thanks, Jan
Janet
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Regular Social Butterfly

Sincerely hope your org is on the level and all that you say it is.     

 

If so,  this is one of the few times a post has appeared on any of these forums that could actually be helpful,  useful,   and of actual/real time  assistance to people dealing with these type problems.  

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Hi,

   I am new to this process. I can relate to your situation, although my wife is in early stage of be depressed all the time, obvious memory lapses, very negative and critical of friends and family.

This began about 2 and half yrs ago. " I am not driving any more" I believe she was confused on her location not sure on way to get home. Since, I will not cook ant more. Forgets a conversation within minutes. Not sure how to turn oven on or off. Adamant on not seeing doctor , for routine exams f.e. eye, dentist, dermatogolist and family doc. " I am fine and do not need a doctor" . I have therefore not received a diagnosis. Have arrange 3 visits with local female internist. A fine lady and compasinate.

My wife has some confidence in her advice, but will not take ant tests or medications. Always well groomed,now will not go to a hair dresser. Hair now gray and has not been cut for months.She still has good personal hygeine. I could use some ideas on how coup with her condition.

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Hello there, husband of Ms. "I'm not driving anymore."

 

Keep coming to this site and posting. Be specific about what part of this craziness is the most crazy making. Maybe we can hack away at the frustrations together one by one.

 

SOooooOOOOooo many people with dementia deny that there is anything wrong with then. Convincing her that she needs help isn't going to work very well. However, you can still get help, hire help, delegate to others, all kinds of tasks that will give you a break and a breather.

 

It takes a village, composed of family & friend caregivers, and professional caregivers like doctors, home health aides, adult day program operators, social workers, et al, to keep a person with dementia safe and reasonably independent.

 

who can you call upon? do you have children? where are her friends. do you belong to a faith community. Tell us. The collective wisdom of the caregivers on this site can answer any question.

 

Thanks for sharing.

 

 

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Have you looked into care.com? You can specify exactly what kind of help you want and how much you are willing to pay for this help. I think that the minimim you can specify that you are willing to pay is $15/hour. But, surprisingly, some people are willing to work for considerably less. Once, you have interviewed someone you find interesting, you can order a background check.

I've hired someone to help me for a minimum of 4 hours 3 days a week. She keeps my husband occupied with games and and both OT and PT exercises. She also "husband sits" if I have a meeting that I need to attend at night. The best part of this is that I can find "Gail Time" when I need it and do not feel guilty.

Contributor

Hi Pam, I wish I was there to personally give you a hug because I so understand how you feel.
Contributor

I cope by watching a lot of comedy on tv, limiting the negative news, not focusing too much on his dementia and other med problems, getting out for short periods of time, texting and talking to my kids all the time, forgiving myself when I freek-out at him, and mostly trying to turn a negative into a positive.

Georgieanna
Bronze Conversationalist

Georgieanna,

 

I love your attitude!

 

 

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My name is Pam, and I have been taking care of my husband who suffered a major stroke, for over two years.  He was grouchy before, but now can be brutel.   I need a hug. 

Contributor

Hi Pam...my husband also had a stroke so I know what your "life" is like.  It's been just over a year for me and it's the knowing that everyday will be filled with the things that must be done no matter how tired I am or how I'm feeling.

((((((((((((((((((((PAM)))))))))))))))))))))---  hope that hug helps. 

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Hugs!
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Hello Pam, I am in the same situation. My husband is quite functional, but impatient and sometimes illogical. Times when you have to walk away wipe your mind. Hugs are good and I give you one. MRM
Mars
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((((((((((((((((((((HUG)))))))))))))))))))))) I'm sad for you in the level of care you must be called on to give.
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[[[[[[[ HUG ]]]]]]]

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