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

[Jlincoln008]

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@geh66 wrote:

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

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Oh i see. I hope he does get better and feels better. What does his doctor say?

He is so lucky to have you in his life.

Those dogs sounds like precious friends.

Jane

[ginaherms]

My dogs are precious friends I do not know how I would cope without them. 

[k89682h]

Ling-Ling my Shar-pei is the Sunshine in my day. Without her I would not have any happiness. 

[ginaherms]

My dogs are precious friends I do not know how I would cope without them. 

[ginaherms]

My dogs are precious friends I do not know how I would cope without them. 

[ginaherms]

The liver doctor believed there is still health and life left in his liver if he would stay of Alcohol there is no telling how many years he would have but he will not stop drinking so I fear he will be gone by christmas. I fear he is in denial off his condition and addiction and had fallen into a depression and is giving up. I do not know how to reach him. 

[geoherms]

Well it has been some time since I have posted here we moved from our roach infested duplex to a nice 3b 1bth house husbands attitude got no better neither did his drinking, then between April & May of this year it's been back & forth to hospital with husband leaving ama on last they drained 7 liters of fluid from belly he had an infection of gallbladder, he stayed till they released him and has been sober since June 1st nearly 3 months if he goes back to drinking he will die and it will not be pretty,  yes I am scared, 

and am very sad because he has 3 Grand daughters one of which he has never met or held and may

never will, he used to tell me he loved me more than life and all I can think is how can he say that and drink away his health his life our relationship our life together no you loved alcohol more than life and me, and what am I going to do when he is gone all of this breaks my heart to tears I cry myself to sleep every night, no there is no life insurance, to ad to all this his 20 year recovering meth head old son is now living with us, lays around sleeping all day will not wash a dish after using it and reuse it will not get on his bike and go look for work has supposedly refiled for social security disability benefits but last time he was here he was supposed to go for an eval and he blew it off thinks he won't have to go for another one I got bad news for him, he has also supposedly filed for snap, his dad won't call him out on his laziness I think he is afraid if he does his son will run off and get high on meth I feel like we are being held hostage by David it's not fair, I bring food stufds home from work and it's always give it to David I brought it home for me, and then I may not have a job come October as my company lost the Walmart sampling events contract to AMS for the last year they have shared the contract so that AMS could have time to hire their own people oct that agreement ends and I have not received a recrutment call from either side, if husband dies his SSD benefits go with him I will need that job, 

[Jlincoln008]

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@geh66 wrote:

The liver doctor believed there is still health and life left in his liver if he would stay of Alcohol there is no telling how many years he would have but he will not stop drinking so I fear he will be gone by christmas. I fear he is in denial off his condition and addiction and had fallen into a depression and is giving up. I do not know how to reach him. 

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That is so hard. For you to love him, and try to help him, and for him to be unable to help himself. People drink for all kinds of reasons, as a way of 'self medicating.' And alcoholism is a disease that does progress and get worse. Very hard to reverse. Very hard to quit drinking. Which doesn't mean that it's impossible to do.  

Have you ever gone to an Alanon meeting? They are the 12 step meetings for partners of people who are alcoholics. I went to a meeting for a year or so some time back, regarding my mother who was not even an alcoholic, but the philosophy of 'detachment' was really helpful ... How do you love someone who is self-destructing? You detach, and still love them. You are with them, but you are not consumed with guilt that you cannot seem to figure out how to rescue him or her. 

Does that make any sense?

It would be a free source of support. Just a thought. He is very lucky you are in his life.

Jane

[ginaherms]

It is hard because it is not that he can't take care of him self it is that he won't and he has been as difficult as all get go last 2 days question us is it his mental health disirder, amoinia in his bilbrum going to his head or both how the hell am I supposed to figure it out.

[Jlincoln008]

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@geh66 wrote:

It is hard because it is not that he can't take care of him self it is that he won't and he has been as difficult as all get go last 2 days question us is it his mental health disirder, amoinia in his bilbrum going to his head or both how the hell am I supposed to figure it out.

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Hey GEH,

If you slip him some lactulose, does it clear his head?

Sounds like the two of you are in a difficult conflicted set of struggles. In one sense, it doesn't matter if its his bipolar, his bilirubin, his ammonia levels. A big part of the struggle of taking care of a person like your husband is that there is a MIX of what is his willful non-cooperation, and what is his illness.  This is key. what is his choice to be a pain in the tuckus, and what behavior is beyond his control?  You can't blame him for what is beyond his control, and yet you can hold him accountable for the part that is his choice. Even if only 5% of his behavior is under his control, you can appeal to that.

Have you tried to "control" (or shape) his behavior with rewards and punishments, like you would a puppy or a toddler? Like, he throws a tantrum; you go take a walk with your dog and leave him to stew. He is considerate to you and takes his meds? Reward him (whatever works. Candy. A kiss. A shoulder rub.) 

Easier said than done. This is why i wish there was an Alanon meeting near you.

I am glad you have your dogs to comfort you.

Jane

[ginaherms]

When he was taking it regularly I noted his memory was improved and his thinking a little better when he was sober 3 months things were really good I could actually have a conversation with him about money and the household. I feel biggest problem is his drinking exhasperates his untreated mental health condition.  He does not want to take his liver and potassium meds because the make him sick No combining his meds with alcohol is what is making him sick. I wish I could find a way to organize an intervention.

[ginaherms]

Have not been able to find one where I live and believe me I have tried.

[er29895137]

Yes. My wife has Frontotemporal Dementia. She was a second degree blackbelt in AIkido and managed a skating rink. In 2011 at age 59 FTD erased her memory of all that mattered in 2012 FTD took all her cognician and made her aggressive.
She is ambulatory and active, rarely sits, rarely sleeps. I have to hand feed her by chasing her with a spoonful. She will rarely drink, cup or straw. I hand feed her watermelon and make all her foods contain a lot of water. Her daily oatmeal is a full 8oz of water. We use much rice in our meals and then add water to make it soupy. I make many soups loaded with vegetables.
I have to take her to toilet every 3 hours or sooner if I detect signs. She would hold bowel or bladder and get sick.
She resists, so it requires 2 of us to sit her down, stand her up, clean her, shower her, dress her, get her in and out of a vehicle on the rare occasions we go out.
She will never go to a facility becasue we, the family, will not allow it and she has beat up the staff in attempted PACE day care and a University geri/psych ward for attempted evaluation. The physicians of both documented and ordered 24/7 attendant by 2 people and that is our life.
She doesn't know me and she resents this 'guy' who is always in her way, but it is noted be every visitor, that I am 'her person'. We were close, buddies, the couple that every one envied. The most hearbreaking experience was, just before she stopped communicating, she looked at me from across the room
and called 'Hey guy! I knew then that I was no longer hers.
I sleep with her to monitor her apnea and do not dare touch her by accident. A little elbow bump, foot touch, and I will be up with her for hours. She whimpers often and sometimes just screams. But if I wake before she does from her 2 hours on, 2 hours off, and I get out of bed, I catch her sweeping her arm acoss the spot where I was, then patting to find me.
It is now 2016, 5 years into this, and I am just now finding out that our Congress has long legislated some wonderful programs for us. Because Christy is young and we are poor from the disease, she is on Medicaid.
Medicaid is a fantastic program, as intended by Congress, but I have had to fight the adminstration in two states for the benefits that Congress intends.
Congress wants me to care for Christy at home.
I now get attendant care for Christy 5 days per week and am fighting for the rest that Congress has legislated for her.
I get 600 hours of extra attendant care per year for me to have rest since my duty is 24/7. I am respecting our much criticized Congress.

[tlmnelson27]

I know how you feel. It is the same exact thing withy husband. His dementia is frontotemporal, so no meaningful conversation or interest in any activities. He does not even dance anymore. This was what he loved. So sad. Pacing is all he does and he burns many, many calories. I just feed him frequently. Medication helps with the sleeping, but not so much with the pacing. Hang in there!

[er29895137]

Wow! That is my wife. She paces the house all day , will not sit, sleeps intermittently at night. She has two manisfastation of the FTD that I just learned are a known. She sometimes hides her left arm behind her back and swings it up and down, other times she will twist that hand at the wrist like trying to remove it and make a throwin motion as if to throw it away. Her Neurologists says that is called the 'alien arm'. Her brain thinks it doesn't belong to her.
The other was a mystery for a couple years. She didn't know me, didn't like me, but she would place herself behind me and whimper. It broke my heart. I would ask her "Baby, what's wrong? What can I do for you?" but she would just whimper.
Her Neurologist said that is called "shadowing" Christy doesn't do it quite like that anymore. She doesn't know or like me, but she looks for me if I am not nearby and she is hard to manage if I am gone for a length of time. She is then excited and a little teenager giddy when I appear, but only for a moment.
Her Neurologist says she is still shadowing and I am 'her person'.  What a horrid disease is FTD. That the shrinking brain can cause common manisfestation to different personalities is mystery.

[dw66398976]

 I am so sorry to hear about this FD and what you are dealing with.  I can relate although my husband doesn't have FD.  He has Parkinson's Disease (PD).  He recently almost died with severe pancreatitis and has since slipped into dementia.  It is horrible to see them so upset and not be able to reach them.  I hope things get easier for you.  Do you have resources?  It helps if you can get away a little.  I will be praying for you and your wife.

[daffydoc2]

Hi, everyone.  I have ready many of your posts, and admire the courage and resilience you have all shown.  My husband was diagnosed with moderate demential (frontotemporal lobe, I believe) last year at age 61 after about 5 years of questionable behavior and apparent memory losses.  He gets lost a lot.  He is not yet at the level that many of you describe and survive.  Still, I grieve daily for the loss of the essence and soul of the man that I love, and fight my own frustration and irritability at the change in his capabilities.  I would like to join the discussion, as I have few other places to turn for support.  I recognize clearly that the trials and tribulations many of you have faced are far worse than I have yet encountered.  If I can be of any help to anyone by listening and supporting, I will gladly do so.  I fear my future is along the path that you already walk.  Thank you for being here.

[lb50258545]

Hi daffydoc2 I haven't been on the site in awhile so I just read your post.  The beginning stages of dementia are the hard for both of you.  Your loved one is scared because he knows something is wrong but doesn't know exactly what is wrong.  And like you said you are grieving because you know he's not himself.  I would like to suggest you enjoy this time with him.  Travel if you enjoy it, visit family, friends, go to favorite resturants, whatever you have been putting off do it NOW, if you can. I say this because you never know when he will become unable to walk or swallow or whatever and you won't be able to do these things.  Yes, you may need to make adaptations, or have someone else join you to help keep him safe but that's okay.  My husband is no longer able to walk greater than 5 feet, so he hasn't been out of the house in over a year.  I miss going for rides in the car with him, or even just sitting on the deck in the evening.  He usually is in bed by 5PM at the least because he's sleepy and more comfortable in bed.  I'm a firn believer of lettng him live as he would if he could just do what he wanted to, and I know him well enough to know what he likes and wants.  Yes, this disease is hard, yes, you will grieve every little loss he has.  But be happy for what he can do everyday.  And in order to do that you need to take care of you too.  You need to get your rest, eat well and get out of the house to do things you like without him.  If you don't have or need help yet, good for you but you may also want to start exploring what services are available in your area.  Talk with your husband's doctor abd ask about services or even a dementia specialist if your doctor isn't one already.

I know this is a lot of information and I do hope it's helpful.  Thank you for offering to be a listening ear, that meand a great deal to me.  Even though our friends know there are times I don't want to burden them with my daily anxieties, frustrations and concerns.  This site is wonderful for being able to share and feel support because others know what we are truly living!  I hope things are going along smoothly for you and your husband at the moment! Hang in There!  Till later!  Take Care!

[ginaherms]

Thank you so much, these days all I can think about is what will I do without him. I wrote this poem

I CRY

I cry 

For my husband

About my husband

Over my husband.

[lb50258545]

Hi All!  Well it's another holiday.  We do not have children so this particular holiday is no big deal for us.  It's just hard to be alone so much!  But doing the best we can and hanging in there!  I keep telling myself it will get better.  I pray it does.  I hope your day is going smoothly and things are well in your world!  Happy Mother's Day!

[tlmnelson27]

I'm so sorry that you are going through this, Mike. Please speak with her doctor. The aggression is part of the dementia. However, you need to me sure that you remain safe. Getting assaulted on a regarding basis is not good. There are medications that are designed to control the aggression so that your wife stops attacking you. It might also help lessen her desire to order you around. You are not failing in taking care of your wife. The dementia is just getting the upper hand right now. Your sanity and well-being are important as well! Ask the doctor if your wife should be in counseling with a psychiatrist who treats people with dementia and then ask for counseling for yourself as a caregiver. Good luck, Mike! You are in my thoughts!

[md86255149]

Thanks for the kind words,  Here is an update.  I have moved into another bedroom to sleep.  We now have living wills, a trust, and powers of attorney.  I have (after she threw a tantrum) taken over dispensing the meds.  She seems more stable now, but still has a temper.  I am learning how to handle her better and learning how to handle things the right way.  I now realize that everything I was doing before was wrong.  I still never know whom I will wake up to.  We see a Psychiatrist tomorrow, I hope this is what we need.  I am willing to do almost anything to make things more palatable for the both of us.

Thank you for the support,

Mike

[md86255149]

My name is mike.  I am trying and failing at taking care of my wife with moderate dementia and sundowners.  She becomes so angry that she kicks holes in doors, and assaults me regulary.  Recently she called the police because I got her the wrong kind of chicken.  The police said it would be best if i spent the night at a hotel even though i was the only one with any signs of injury.  So I packed my bags and had to leave my wife alone for the night.  I never know what will set her off so I just leep a suitcase packed and in the car ready to leave at a minutes notice.

My wife refuses to do anything but lay on the couch, watch tv, and order me to wait on her.  If things do not go her way she just announces that she will just call the police again, and i cave in.  My love for her and our marriage is jeopardy.  I have nothing in the way of any powers of attorney because she will not sign anything. 

I have become very resentful and at this point I feel like I have only one option.  She thinks she can take care of herself even though she has forgotten everything about daily life except how to order me around.

Well there it is.  Bash me if you want, but it does feel a little better just to get it out. 

[er29895137]

Wife has severe Frontotemporal Dementia. She can not communicate, or do anything for herself. She is aggressive and of all things that remained in her memory, is 20 years of aikido. It requires 2 people with her at all times because she doesn't comprehend this world. She is receiving attendant care at home.
I have to be with her 24/7, the attendants do all the household things that I can't and they help with anything physical as she is combative.
Typical dementia Rx just bent her over 90%, made her drool, but did not change the aggression.
We found the answer to the aggression and we since have much laughter in the house. She is still combative when touched and handled for necessity as toilet, dressing and shower, but not nearly as bad and although she does not speak, she occasionally manages to say, "sorry, sorry" as she is beating us up.
Christy always has been a proper lady and would never use coarse language but the last frequent word was "**bleep**".
It has been 5 years and I can do this if she does not get worse. If she gets worse I will still do it, but not as easily. She has been at this level for 2 years.
I looked back at the cruel things she would occasionally do that were totally out of character and realize the onset began 15 years ago.
 We laugh when she laughs, but we have no idea what it is about. We have to enter into her world and pretend to comprehend it.

[tlmnelson27]

Hi Amber. I'm so sorry that your husband had a stroke and you now find yourself in this position. Could it be that the stroke damaged a part of his brain having to do with his emotions? Could he have sustained ome damage to his temporal lobe? This would explain his behavior as far as seeming emotionally distant - not hugging or thanking you, not treating you as a husband would a wife, and it could also explain why he gets his feelings hurt and cries. I would most certainly mention this to his doctor. As his wife, it's extremely hard and hurtful for you to deal with. Unfortunately, it could be that because of the stroke he cant help it and it isn't his fault. Please DO talk to his doctor. Amber, dear one, you say that nothing is really wrong, but you've been through a scary time with your husband and things don't feel right since it happened. It's quite natural to cry - a lot! Please don't neglect yourself. Set reminders to take your medication. Remember to eat. You can't help your husband or yourself if you get sick as well. My precious husband has advanced frontotemporal dementia. He forgot who I was long ago. He will never initiate a hug, I give them anyway. He seems to enjoy them. He enjoys when I rub his back or gently massage his neck, hands and fingers and speak softly and lovingly to him. Maybe you could try that with your husband and see how he responds. I say "I love you" a dozen times a day. I smile at him. And I cry - a lot. Good luck, Amber. You and your husband will be in my thoughts and prayers.

[ozzma]

I'm amber. I really didn't think about myself as a caregiver much until recently. My husband had a stroke on Dec 23rd. He was unaccounted for for over 19 hrs after it and the Doctors said his prognosis wasn't good. I was told he'd be fed through a tube, not recognize me, not have his mind or recover his speech. They expected him to die. I was in another state and rushed to get to him. None of the expectations they gave me happened. 4 months later, he's walking, talking, thinking, and regaining his right side functions is his total focus. He's so close. But he is limited and it puts everything on me. I miss being his wife. His health is under control - from his B/P to his blood sugar, to his cholesterol. He is so much better. Our biggest problem is that he won't exercise like he's supposed to, he has right side weakness and his face has droop. He works his arm. He perks right up during therapy and acts like he can do everything. He walks on his own with me just watching. The biggest thing for me is I never see his smile anymore. I never get a hug. I seldom get thank yous. When I tease like we would do with each other, he gets his feelings hurt and cries. The last thing I ever want to do is hurt him. Since March, my kids don't even check in anymore. The line between caregiver and wife is so convoluted. I find myself crying a lot. Nothing is really wrong. I just walked through the house and realized i didn't take my medicine today. I left my breakfast on the table. i didn't eat lunch. I made dinner and it was my first meal of the day at 9pm. My bloodwork is worse than Steve's and HE HAD the stroke...sigh. Yes, I am caregiver to my spouse.

[Jlincoln008]

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@ozzma wrote:

I'm amber. I really didn't think about myself as a caregiver much until recently. My husband had a stroke on Dec 23rd. He was unaccounted for for over 19 hrs after it and the Doctors said his prognosis wasn't good. I was told he'd be fed through a tube, not recognize me, not have his mind or recover his speech. They expected him to die. I was in another state and rushed to get to him. None of the expectations they gave me happened. 4 months later, he's walking, talking, thinking, and regaining his right side functions is his total focus. He's so close. But he is limited and it puts everything on me. I miss being his wife. His health is under control - from his B/P to his blood sugar, to his cholesterol. He is so much better. Our biggest problem is that he won't exercise like he's supposed to, he has right side weakness and his face has droop. He works his arm. He perks right up during therapy and acts like he can do everything. He walks on his own with me just watching. The biggest thing for me is I never see his smile anymore. I never get a hug. I seldom get thank yous. When I tease like we would do with each other, he gets his feelings hurt and cries. The last thing I ever want to do is hurt him. Since March, my kids don't even check in anymore. The line between caregiver and wife is so convoluted. I find myself crying a lot. Nothing is really wrong. I just walked through the house and realized i didn't take my medicine today. I left my breakfast on the table. i didn't eat lunch. I made dinner and it was my first meal of the day at 9pm. My bloodwork is worse than Steve's and HE HAD the stroke...sigh. Yes, I am caregiver to my spouse.

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Hi Amber,

I haven't been on this site for a while, and i'm moved to respond to your post. You posted it almost a month ago. I'm so sorry he had a stroke. You are now in a totally different marriage, aren't you? and you grieve for the loss of what you once had.  It is important, i think, that you allow yourself to do that, to grieve what is really gone. Terrible as it feels, since he's still there with you. but what you had is deeply different. 

My hope is that he will recover even more, and regain his sense of humor so that you can tease and joke, and he'll be right there with you, laughing.

Might not happen, but one can hope.

Are there stroke survivor support groups in your area? or even simply caregiver support groups. there is all kinds of caregiving, but there are also lots of similarities between one family caregiver and another.

thank you for writing. i hope it's gotten better since you've written. that you're feeling more accepting of all of your feelings. that he's improved. that perhaps your kids are coming by again. "Better" as you define it. I hope it has gotten better.

write more?

Jane

[lb50258545]

Hi Amber,

I too have been away from this site for a long time too and I read your post and felt badly no one had replied before Jane. I too hope you are feeling better. I understand your feelings. I too care for my husband 24/7 and even though I am a nurse, I still abandoned by my husband. I too miss our conversations, physical contact, the little tings that were special to us. It's difficult at best but it's absolutely vital to take care of you! I'm sorry your kids are avoiding you and their Dad, have you told them how important it is to YOU to see them and talk to them? You need their support as much if not more than your husband does.
My husband has dementia and frequently speaks in his native language of Greek which I know very little, BUT I still treat him as an adult and I remind him, gently, of please and thank you. I tell him every day I love him and I ask him if he loves me, he always says yes. But I don't and won't allow him to be nice to our caregiver who comes in and not me. So even though he has dementia he knows we treat each other with love and respect, just as we always have.
You are in the early stage of caregiving it takes time to develop a routine. I would suggest you talk with your husband and set rules. If he can walk independently in therapy then he needs to do that home. No more one way in therapy and another at home. If you need a daily hug, let him know, that's important to you.
It takes time to establish your new patterns. It might be helpful to sit down and determine what do you need for you? Do you need a companion to come in a sit with your husband so you can get out? Do you need to set up a schedule for the day that includes taking your meds, eating your meals (are you not eating with your husband?), any and all the little things that make up life.
I do hope since you've written life has gotten better! I wish you the best and am sending prayers to that end!
Take Excellent Care of You! Linda

[lb50258545]

Hi Amber, I'm sorry you are having this experience.  It is difficult at best to care for someone and worse when that someone is the person you love and they don't respond the way they have in the past.  It sounds like your husband's physician didn't explain to you or your husband the possible personality changes as a result of your husband's stroke.  You may want to ask the physician about that as it may provide you with some insight as to why your husband behaves the way he does.  I do hope you have some time to get away from your husband and relax.  I know it can be difficult but it is so important.  You need to take care of you, because if you don't what will happen to your husband and who will take care of you?  This is a wonderful sight to express your frustrations, no judgements and any offered advice comes from a place of love and understanding!  I hope things are getting better hope you!  Take Care of you! 

[tlmnelson27]

Bless your heart. Best of luck to you as you figure out how to reinvent your life without your dear wife. You summed up everything I would say about my precious husband. His doctor feels it won't be long. I will always feel I would never have had him long enough even if we would have lived to be 1,000 years old.