Is anyone taking care of a spouse?

[Futurehope]

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

[JaneCares]

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@ls9317715 wrote:

I have been with my husband all day every day since he had brain surgery in December of 2014.  Unfortunately there was an undectected problem  resulting in a stroke that took out his right arm and leg and left him with aphasia.  We were 5 weeks in the hospital, 2 months at a skilled nursing rehab, 1 month at an intense acute rehab and then home. Since May he's been in the hospital twice--once for seizures he began having, and again for a serious intestinal infection.  He gets minimal therapy with Medicare--and he needs total care from me 24/7.  He can't stand or walk, he can't do anything meaningful with his right hand/arm, can't use the bathroom,  and he still has problems finding words and expressing himself.  Being a caregiver is not a job/title anyone wants. Since I am an older person, I wonder how long I can keep going. It is very hard to do all that needs to be done everyday--and most things that can be ignored, don't get done.  There are days when I am so frustrated and angry--and I take some of it out on him knowing none of this is his fault.  The weight of the responsibility for decisions about him and his care are crushing because I take it so seriously and want to do the best for him. Nothing is simple anymore...I am grateful we have an adult son who lives with us and who's help I count on every day.  Someone else said that people not in our shoes don't undersatnd--and that is true.  I never could have imagined the existance we have now.  Nice to be able to "vent". 

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You don't have to be his only caregiver.  You and your son could hire someone to help. Even one day a week for 4 hours would allow you time to get out of the house, get a haircut and go to Costco, and come home. 

Maybe your county has a respite care program. You can get financial help for caregiving to give you 'respite'. Find out what's available in your county or city at www.eldercare.gov and type in your zip code. 

What would really help you?

Tell us,

Jane

[mv6544509]

jMACFLINCOLN - I am so sorry. It takes a huge amount of patience and the frustration level is so high. Sometimes, I feel that I am losing most of my personality and becoming only involved in my spouse's care. And he is able to physically take care of himself. Do you have a college/university in your area that has a stroke therapy department? Sometimes they can help with therapy when medicare is limited. All my best wishes. Mars

[tlmnelson27]

Yes. I am taking care of my husband. He has severe frontotemporal dementia with semantic aphasia. Basically, his speech is scrambled. These days, he barely speaks. My husband was so fascinating - a genius, former Navy Commander with several degrees, actor, model, entertainer! I was an entertainer as well. We were living this crazy, exciting life. Then he began to forget the names of everyday things. It just got gradually worse and now he cannot remember or recall anything and can't do anything for himself, except wander all day and eat and drink by himself. He doesn't know anyone, not even me, but he knows I'm his person! I still look for ways to find joy in Husband 2.0 each day. I cry--A LOT, but I have the people on this site, a gifted hypnotherapist, a therapist and a psychiatrist. I highly suggest therapy, a local support group, this site, anybody who you can share your heartache and concerns. It helps immensely. He's 70 and I'm 55. We've been together 22 years, married for 11. I am heartbroken at the prospect of life without him. Last week a doctor blurted out that we may only have 6 -12 months. Next time hit me in the head with a baseball bat, it would have hurt less and I'd have something to show for it. Geez!

[lb50258545]

WOW tlmnelson I can so relate to your post! I agree it's heart breaking and frustrating and irritating and so much MORE! Don't count on your husband living only 6 to 12 months, he could surprise everyone a live much longer! I'm glad you have supports, and keep writing, it does help to express your feelings! Sending you lots of prayers and positive energy! lmb

[lb50258545]

So I learned yesterday that one of the ladies who comes into our house to help me care for my husband can no longer help pull him up in the chair.  This doesn't sound like a big deal but it is.  My husband doesn't have the ability to push himself all the way back in the chair and I don't have the physical ability to pull him back all the way sometimes either.  He is becoming more and more debiliated and I'm having trouble coping with his loss.  I have other ladies I can ask to help, it's just things changing again, it gets so frustrating.  It seems about the time I feel I have everything under control, BANG!  Something happens.  It would be easier if I had family who cared but I don't.  Yes, I have friends and I do share with them but I'm careful not to over share because I want to keep my friends.  I also have a therapist and that helps but there are times like now Sunday morning when stuff just hits me and I just feel overwhelmed and wonder how long can I go on?!?!  So I write on here and I really appreciate your reading and your understanding.  Thank You!  I'm off to get my sweetie up for the day!  I hope your day is a good one!

[Jlincoln008]

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@lb50258545 wrote:

So I learned yesterday that one of the ladies who comes into our house to help me care for my husband can no longer help pull him up in the chair.  This doesn't sound like a big deal but it is.  My husband doesn't have the ability to push himself all the way back in the chair and I don't have the physical ability to pull him back all the way sometimes either.  He is becoming more and more debiliated and I'm having trouble coping with his loss.  I have other ladies I can ask to help, it's just things changing again, it gets so frustrating.  It seems about the time I feel I have everything under control, BANG!  Something happens.  It would be easier if I had family who cared but I don't.  Yes, I have friends and I do share with them but I'm careful not to over share because I want to keep my friends.  I also have a therapist and that helps but there are times like now Sunday morning when stuff just hits me and I just feel overwhelmed and wonder how long can I go on?!?!  So I write on here and I really appreciate your reading and your understanding.  Thank You!  I'm off to get my sweetie up for the day!  I hope your day is a good one!

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This business of lifting him in his chair is a tricky one. I have 2 suggestions. One is to get a chair that has a lift in its seat. not only are they recliners but the seat pushes up and helps a person to stand. A marvelous invention! If you can't lift him up while he's sitting in the chair, why not get him up and situated again in it. Is there any surface you can put on the chair that will keep him from sliding down again? 

Secondly, can you schedule someone strong to come and help you get him up at a crucial time of day? Like, a neighbor who comes home at 6pm: would they agree to come over and lift them with you? The last lift of the day before you get him up and into bed?

Oh and btw, a semi electric hospital bed is sometimes covered by Medicare, and can come in super handy to get someone weak in and out of bed. you lower the bed, lift the head of it with the touch of a button, use the side rails to get him to grasp them, swing his legs down.... really helps your back.

what solutions have you come up with?

Jane

[lb50258545]

Hi Jane,

Thank you for your suggestions. We do have an electric bed, it certainly does save our back when providing care for my husband. Unfortunately my husband doesn't have the ability to follow instructions, he tries and I appreciate that but basically it's a matter of doing for him. As far as a "lift recliner" I thought about getting one but haven't yet. Currently my husband is going to bed early to late afternoon so sitting up and sliding in the chair is becoming less and less an issue. When I do his care alone I get him into the his chair with a Hoyer lift and usually manage to get him pretty well upright and I can usually pull him back a bit. There's always new challenges, it's just a matter of being adaptable. Unfortunately there isn't a neighbor I can call on and that's okay. I'm learning to adapt and make the best of our situation!

[Jlincoln008]

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@lb50258545 wrote:
Hi Jane,

Thank you for your suggestions. We do have an electric bed, it certainly does save our back when providing care for my husband. Unfortunately my husband doesn't have the ability to follow instructions, he tries and I appreciate that but basically it's a matter of doing for him. As far as a "lift recliner" I thought about getting one but haven't yet. Currently my husband is going to bed early to late afternoon so sitting up and sliding in the chair is becoming less and less an issue. When I do his care alone I get him into the his chair with a Hoyer lift and usually manage to get him pretty well upright and I can usually pull him back a bit. There's always new challenges, it's just a matter of being adaptable. Unfortunately there isn't a neighbor I can call on and that's okay. I'm learning to adapt and make the best of our situation!

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i forgot about one more resource. 911!  They do a service involving "Manpower" which simply means they will come to the home and lift a sick person off of a floor or around a bed or wherever he or she is 'stuck.'  They're not supposed to do this routinely, but in a pinch, they will come and lift someone safely and carefully. I did this recently for a patient and i was amazed at how willing and fine the firefighters were with the job. They seemed bored but perfectly willing. They moved a 94 year old woman from one bed to another as we moved her to another room in a facilitiy. They used a gurney and were super gentle. She was fine through the whole thing, and her family was relieved, as was i!  Your taxpayers dollars at work!

You have a great attitude!

Keep sharing... we all learn from each other...

Jane

[ls9317715]

Boy---I can relate to all of that.  There always seems to be something that happens just as you get into a sort of "groove".  It's very stressful and yes, the things that seem little really can get to you. Hope you had a good day.  : )

[pennypincher81]

I have been taking care of my 90-year old husband for the last 7 years.  He has Lewy Body Dementia and Parkinsons.  I was going through chemo and radiation for breast cancer when my husband started having problems.  I am 87 years of age and have other health issues.  I am not able to do the actual caretaking, but do have help around the clock.  I know it is very difficult to do all that is needed day after day for your husband.  Even though I have help, I am usually here overseeing things and tending to his meals.  It is a very lonely world now for me, and I know it must be for you too.  My faith in God keeps me going - without Him I would be locked up in an institution!  

[JaneCares]

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pennypincher81 wrote:

I have been taking care of my 90-year old husband for the last 7 years.  He has Lewy Body Dementia and Parkinsons.  I was going through chemo and radiation for breast cancer when my husband started having problems.  I am 87 years of age and have other health issues.  I am not able to do the actual caretaking, but do have help around the clock.  I know it is very difficult to do all that is needed day after day for your husband.  Even though I have help, I am usually here overseeing things and tending to his meals.  It is a very lonely world now for me, and I know it must be for you too.  My faith in God keeps me going - without Him I would be locked up in an institution!  

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I'm glad you have 24 hour care, and your deep faith!  You are doing the caretaking, by overseeing, keeping track, etc.

Does your community have doctors who do housecalls? The area i live in has several practices where doctors accept medicare and see people who are 'home bound.'  It's wonderful not to have to take someone to the doctor. The doctor comes to you! Might be worth exploring.

Best of luck to you. And please keep sharing. For example, how did you find good, reliable home care support? 

Jane

[mv6544509]

Reading some of your messages, I am struck by the similarities we all are coping with. My spouse, a stroke victim with damage in the logic, and cognitive areas of his brain, refuses to believe that he is not functioning as well as he used to. I see instances where he is declining, but have trouble expressing this to his medical team without my husband being present. How do the rest of you communicate to a PCP, endocrinologist, therapist without your spouse being right there? Hugs to all. 

[Jlincoln008]

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@mv6544509 wrote:

Reading some of your messages, I am struck by the similarities we all are coping with. My spouse, a stroke victim with damage in the logic, and cognitive areas of his brain, refuses to believe that he is not functioning as well as he used to. I see instances where he is declining, but have trouble expressing this to his medical team without my husband being present. How do the rest of you communicate to a PCP, endocrinologist, therapist without your spouse being right there? Hugs to all. 

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One trick i use is to fax the doctor's office before i take a client to see the doctor (i have been a geriatric care manager and am now a hospice social worker.)  I'd often handwrite it in large magic marker to get the attention of whomever is removing faxes from the machine. Then put my concerns below that. Something like this:

Fax to Dr. So and So

Regarding upcoming appointment (Day and Time) with Patient So and Such,

I am his wife and primary caregiver. I have the following concerns that i cannot bring up with him in the room:

1. He's in denial about his cognitive impairment. I see the following behaviors that he won't admit to. Is there anything that can be done to treat them? ___________, and ___...

2. This drug seems to have a terrible side effect....

3. Blah blah.

Keep it short. Send it 1 business day before the appointment so the fax gets in the chart, which may be the first time the doctor sees it.

Doctors know all about the trickiness of talking to the spouse/caregivers out of earshot of the patient.

See how that works. Good luck,

Jane

[mv6544509]

thanks, I don't have close access to a fax, so I wonder about e-mail.

[Jlincoln008]

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@mv6544509 wrote:

thanks, I don't have close access to a fax, so I wonder about e-mail.

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In a pinch, i've used my church office's fax machine, and i've been known to go to FedEx and send a fax. If the doctor's office is not too far away, you can always drop something off a day or 2 before the appointment. it is such a relief when doctor's use email or an insurer (like Kaiser) has a portal. There's also snail mail. Just mail something a week before.

one tactic of many possible ones.

Jane

[mv6544509]

thank you-If I titled snail mail, att'n, confidential-would only the Dr open and read? My spouse is so suspicious anyway.

[JaneCares]

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@mv6544509 wrote:
thank you-If I titled snail mail, att'n, confidential-would only the Dr open and read? My spouse is so suspicious anyway.

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Hi Mars. I don't think so. Doctors have lots of people who work for them. I would think someone else would see your request. Perhaps it is best to go there in person and hand it to the doctor? Or, hand it to her/his nurse? You'd have to wait in the waiting room for a bit, but if you explain to the receptionist that it is a note about a patient, it might work. It is very hard to get to doctors which is so unfortunate, but you have important news to share and it needs to be share, for your spouse's behalf.

I'm sorry your spouse is so suspicious. This suspicious/bordering on paranoid behavior and outlook is sadly very common in people with cognitive impairments. there are medications that help, believe it or not, including a very old medication called haloperidol. i once had a patient (a client, when i was her geriatric care manager), who was extremely paranoid. She thought the FBI was filming her every move (didn't tell her about the NSA... Sigh...). She was also constantly calling the police, who referred her to adult protective services, who assigned her a guardian, who hired me. Anyway, finally i got her to agree to see a psychiatrist, for 'stress.'  She liked him, he was very gentle and affirming of her, and he put her on haloperidol, for 'stress'. After a few weeks, she reported that the voices she heard, and her pounding fear, were 'less intense.'  Progress!  Then her daughter in a fit of pique told her she was on 'antipsychotics.'  Poof. She refused to take them any more. 

tough stuff. Please keep writing. there is so much wisdom in this community.

jane

[mv6544509]

thank you, this is a real problem, since I don't have much time to myself. Mars

[lb50258545]

Hi Mars, I email my husband's specialist nurse and when I'm out I will talk with the office nurse. My husband doesn't leave the house so I have some freedom there. Otherwise if I'm speaking with someone and they ask questions about his condition in front of him I direct the question to my husband. Hope that helps! LB

[mv6544509]

Thank you. I need to find some e-mail addresses!

[countrygent139]

Hi Mars,

Check with your clinic or hospital as they probably have a patient portal you can use to communicate with the doctor, etc.  Known as MyChart and other names, this allows you direct communication with the health providers. 

[mv6544509]

Thank you. Excellent suggestion because we do have an on-line portal.

[lb50258545]

Well I've had a day and a half.  My husband who has Lewy Body Dementia has become increasing mobile and this afternoon stood up and started walking on his own.  He hasn't done that for at least 6 months.  The problem with him standing and walking independently is he has VERY limited endurance and of course when I helped him he couldn't make it to his chair and sat on the floor.  The good news is I can use the lift to get him off the floor.  Believe it or not this happened a second time when he wanted to use the commode chair and again couldn't make it back to his chair and again sat on the floor.  Thank goodness he didn't get hurt and neither did I.  But what I realized this afternoon is I can't make him better and I'm feeling so overwhelmed with his care.  I don't want to place him in a nursing home and I don't want more help in the house, someone just sitting here till it's time to do something.  I feel so trapped and I don't know how to change this feeling.  I also feel like such a failure.  I realize intellectually I can't make him better, emotionally well I'm a wreck.  We have no family in the area, rarely have anyone stop in to visit unless they are coming in to sit with my husband while go out.  I don't know how much longer I can do this and that makes me sad as well.  Yes, I do get out everyday for at least 2 hours and some days more, it's just emotionally exhausting for me.   Any suggestions, ideas?  Thank you so much for reading and responding! 

[Jlincoln008]

REGARDING FALLS

I think this is true all over the USA. When you call 911, you can request MANPOWER, which means you need a couple of burly men to pick up the person who has fallen and gently plop them either into bed or into a chair. Don't risk hurting yourself. it's your tax payer dollars at work. 

Call 911.

Jane

[Jlincoln008]

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@lb50258545 wrote:

Well I've had a day and a half.  My husband who has Lewy Body Dementia has become increasing mobile and this afternoon stood up and started walking on his own.  He hasn't done that for at least 6 months.  The problem with him standing and walking independently is he has VERY limited endurance and of course when I helped him he couldn't make it to his chair and sat on the floor.  The good news is I can use the lift to get him off the floor.  Believe it or not this happened a second time when he wanted to use the commode chair and again couldn't make it back to his chair and again sat on the floor.  Thank goodness he didn't get hurt and neither did I.  But what I realized this afternoon is I can't make him better and I'm feeling so overwhelmed with his care.  I don't want to place him in a nursing home and I don't want more help in the house, someone just sitting here till it's time to do something.  I feel so trapped and I don't know how to change this feeling.  I also feel like such a failure.  I realize intellectually I can't make him better, emotionally well I'm a wreck.  We have no family in the area, rarely have anyone stop in to visit unless they are coming in to sit with my husband while go out.  I don't know how much longer I can do this and that makes me sad as well.  Yes, I do get out everyday for at least 2 hours and some days more, it's just emotionally exhausting for me.   Any suggestions, ideas?  Thank you so much for reading and responding! 

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Hire an aide!  The minimum is 4 hours. You can get your hair cut and go to the grocery store or have lunch with a friend. Do you sit around and do nothing? They won't either. Ask them to clean his bed, or vacuum around his chair which surely has crumbs all around the floor/rug. Ask them to heat up a meal and give it to him. The aides i work with are from the Phillipines and West Africa, and they vary as all humans do, but they are trained to clean bodies and keep minds company even if the minds don't work very well. They make a little bit above minimum wage for a job that is not easy. Don't begrudge them their down time. Give yourself a break.

Jane

[lb50258545]

Hi Jane, I do have an aide that comes in everyday to help and I do get out. Unfortunately not all situations occur when the aide is in our home. Plus I enjoy being at home without the intrusion of another person sitting till it's time to "do something" for my husband. The good news is as a nurse who has worked in long term care I do know how to use a lift and safely transfer my husband even when he is on the floor. It's just frustrating at times, there are no easy answers and I like this forum to be able to share those frustrations. thank you for listening!

[Jlincoln008]

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@lb50258545 wrote:
Hi Jane, I do have an aide that comes in everyday to help and I do get out. Unfortunately not all situations occur when the aide is in our home. Plus I enjoy being at home without the intrusion of another person sitting till it's time to "do something" for my husband. The good news is as a nurse who has worked in long term care I do know how to use a lift and safely transfer my husband even when he is on the floor. It's just frustrating at times, there are no easy answers and I like this forum to be able to share those frustrations. thank you for listening!

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You are very welcome. I learn something everytime i read caregiver's posts. There are common challenges and unique ones. You really know what you're doing. And still, there are so many frustrations!  Carry on, and keep posting! Thanks for sharing, truly.

[mg50694312]

I am caring for my wife now and I plan on keeping her at home, however both my parents ended their days in a nursing home and I found that talk is cheap until the time arrives and it is decision time.  We wanted to keep our parents at home, but you reach a point where a nursing home will better care of your loved one than we can.  When we placed our father in one he was glad we did it.  He told me he had a whole new audience to talk to.  In your case, you have it a lot tougher, you are on your own.  You need to balance his health and yours.  You have to stay healthy for him.  He will be in for harder times if you're out of commission.  The time you will spend with him in a NH will be of much better quality.  In addition, we found that the nurses really do care about our loved ones.  When my Dad passed away, his nurse cried.  Don't worry or feel guilt, measure this decision on quality of care and your own physical and mental health.  Both you and him want loving memories at the end.  Look around, God is with you.  Pray for guidance and strength, he will give you more than enough.  Whatever you decide, it will be the right decision.  God be with you in your time of need.

[lb50258545]

Thank you mg for your response. I have lots to think about and have been praying and listening to my guidance.

[kbeaty49]

This is my first time on this site. I am caregiver to my husband who has a brain tumor. His first surgery was 10 years ago, another 4 years ago, and last summer they wanted to do another but he refused. The doctors are amazed and say he has lived three times longer than the average. A year ago I quit my job to care for him full time. He has a lot of difficulty walking, remembering, etc. In September he had a two week hospital stay as the result of a fall caused by a pill form of chemotherapy that affected blood cell creation. Physical therapy got him to the point he could come home but he quit the exercises after two weeks. 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. Even when I tell him where I am going to be, he forgets and yells to see where I am. I can't count the number of times I have left my shower or other tasks to rush to him to see if he has fallen or some other emergency only to have him tell me he didn't know where I was.
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.
Yesterday I suggested we see a movie. The movie had left and choosing another theatre and movie times were long waits, something he does not have the patience for. We returned home. On the way home he said he would have enjoyed a movie he previously said no to. I was down the rest of the day.

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.