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I am taking care of my fifty-three year old husband who suffered a terrible stroke and I stopped working to take care of him. I took care of my father for tweleve years prior to my husband having his stroke. I am tired, and most days frightened. I guess I believed being a girl there would be someone to take care of me, how strange things have turned out. I trust God will help me, but I feel very hopeless. I love my husband dearly, but life seems very hopeless.

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OH, DADDYSGIRL IM SO SORRY TO HEAR ABOUT YOUR HUSBAND. I DONT NO WHAT I WOULD DO WITHOUT THE STRANGHTH OF MY HUSBAND. HE IS 14 YRS OLDER THEN ME AND IN THE BACK OF MY HEAD IM ALWAYS AFRAID. WHAT DO YOU DO FOR JUST YOU????? BECAUSE OF MY MOM, I TAKE LONG HOT BATHS, AT LEAST FOR 20 MINS YOU CAN TAKE CARE OF JUST YOU. I WISH THERE WAS A MAGIC WORD TO HELP YOU. DO YOU PUT YOUR HUSBAND IN SOME KIND OF DAY CARE FOR TIME OUT? TAKE CARE

TRACY
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At last another spouse caring for a spouse-thank the good Lord- My husband will probably come home from the hospital today or tomarrow at the latesse. H e has gone back to verbably abuseing and refuseing to dress himself-I guess I will have to become a b----again and not fall for his crying and make him do things. Daddysgirl please vent your feelings to me what are his limitations- is he able to do anything for himself, My husband plays games he calls himself a cripple even though he can get in and out of bed into a wheelchair and can walk with crutches and is able to get his braces on his legs and shoes and is able to get a simple meal together but wants to be waited on hand and foot and actually cries like a 3 year old when his needs are not met-and tells me he hates me one min. and loves me other times, I also feel helpless most of the time. H e really needs to be placed but I don't want a nursing home to get everything. I so pay for private aides three times a week for 5 hrs each-but he doesn't ask the aide to do much for him and wait until he has left to demand his needs-I have to constantly be the bad wife and remind him how much we aew paying the aide to sit around most of the time. Come to this site and maybe we can help each other very often we can see others opions better than our own-take care dear lady and God bless.
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Life is a cruel shock for many of us who were raised to think a man would be there to at least help us along the journey. Then we find we are the caregivers and the sole providers to keep a roof over our heads, care for our children and/or often the husband.

Often ill people won't do what they are capable of, and that isn't good for them. A wife/mother will do it, they figure. But then they get more helpless. Then, like Austin, we have to get stern and we hate having to do that.

There's often a lot of manipulation going on with the sick person, and there's only so much a caregiver can take. It's good to get outside help. However, I know my elders would wait for me to do the thngs "the way they liked them." Of course, I would! Then, I became indispensible. It can be a vicious circle.

Hang in, Ladies. Keep communicating. You do help each other.
Carol
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oh,,[crying] it is so nice to see someone else going through what I am. My husband had three heart attacks in 2003 and I never got to go back to work. He was abusive verbally while "playing around with neighbors". Recently he got really sick and had to have brain surgery for bleeding..while in hospital he could talk and walk and he actually blacked my eye. I just started school in two places to return to work and pay some of the bills. Now there are more bills. I had him moved to a rehabilitation center for 20 days while I moved to a cheaper place and went to school. On last Saturday he signed himself out and now I am supposed to care for him, go to school, and fight all night[he sleeps all day]. I can put him back but it will cost $200 a day and we really do not have that money..also they will take his check that I need to move on the Nov 3rd. Honestly if things don't improve as soon as we move if he does not improve I am seriously thinking of putting him in there permanently. He is 62 and the bleeds will reoccur over and over. I am sorry if I sound selfish. I really am not..just so exhausted.
marilee
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You are not selfish. He needs care and you need to take care of yourself, as well. Keep coming back to tell us how you are doing and what you decide.
Carol
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It.s hard reading about life with the one you love in desperate need and to think back when my dad would not go to the doctor unless I took him and my brother lived in town near him. I was living in another country at the time dad passed away. I have spent more time in the air traveling to get dad to go to the doctor the last two years he was alive. I'm glad I did it. I was a daddy's girl and he trused me. My mother was very nasty to me and dad the last two years of his life. Now I'm taking care of mother. My husband has been there for me through it all. Now I'm seeing signs of Alzheimers in my husband. I'm scared, but take one day at a time. He want go for testing. I pray he will before it gets worse.
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Marilee I am so sorry for all you are going through I wish I could help but all I can do is to encourage you to keep in touch and my concerns and my friendship and will look out for your postings we all will help you as much as we can. and girlfriend you are not selfish you are the only one trying to cope he could be more helpful and I hope more spouses come on board, sometimes placement is the hard answer and only you know when it is time-I am trying to put it off but had to cut down the number of hrs we have our aide -he understood why I had to do it but his wife would not accept it so I called the agency and got another aide for the two 5 hr days we want- I feel bad we really liked the first aide but we had to do what was right for us and I had cut everything I could.
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Lynn I wish you well, I am sure in time others will see what you notice in your husband my husband is forgetful but so far it is only me that notices, please keep us informed it must be very worriesome esp. since he will not go for test and there are meds out now that do help slow it down-I will pray for you and hope the people here will be of some comfort to you,
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Talking about these issues helps. None of us can really solve another's problems, but we can suggest and support, and most of all, we can help break the isolation and feeling of being the only one who has these problems. This group is so supportive, and that is helping many people. Hang in, everybody and keep checking in.

Carol
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My Name is Patty I'm staying with a 78 yr old. She has 2 stage of demancha and gets very mean sometimes is their anythink Ican do to make her not so mean and keep her clam at the same time?
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Hi Patty,
I know it doesn't always make sense, but agreeing with her when you can helps. She believes what she sees and says and remembers - to her that is fact. So, even though your reality is different than hers, and you know that what she says is wrong, if at all possible, agree with her. If you can't do that - say she's saying she wants to go home and she IS home, sometimes is helps to say, "Let's get in the car and take you home." Then drive around a couple of blocks and say, "Here we are." Distraction works a lot. Agreeing works often. Sometimes, though, you just have to tough it out. But arguing will only make the situation more stressful for both of you. Yes, I know it's hard. It won't always work. But, these are suggestions.

Carol
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Queenie
Something that worked when I was a nurse when a pt. would ask the same question over and over again like what time is it I would ask them the question they had just asked me and many times they could tell me the answer and would not repeat the question for a while.
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HI CAROL, YOUR ALWAYS A HELP TO EVERYONE THAT COMES HERE. ITS JUST SO SCARY TO WHATCH YOUR PARENT OR SPOUCE CHANGING RIGHT BEFORE OUR EYES WITH REALLY NOTHING WE CAN DO, BUT CRY ALOT. I FIND MYSELF CRYING ALL THE TIME OVER STUFF THAT WOULD HAVE NEVER BEFORE BOTHERED ME. NOW IN SENCITIVE TO EVERYTHING AROUND ME.

TRACY
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what are the stages of dementia? what can you do about his thinking its morning but really ist night. miak
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Daddy'sgirl, I am new to this, but I have been a caregiver most of my life in one way or another. I once in a while think the way you are. I take time and talk with God and then I take time for myself. I understand about the husband thing as well. I have a husband and an ex-husband that are the same person. He has been through quite an ordeal himself. I try to take care of him, but when it comes right down to it. We need to remember that God has put us in that place for a reason. Nothing is ever hopeless. What other support do you have? Do you have a sibling or a close friend to confide in? I have always found that getting support from outside is always a great help.
PatsyTraudt
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Queenie0327 -
can you please give us some details on what constitutes "mean" and what behaviors or emotions you define as not "calm". No one can assume they know what you are talking about, so please share the details with us & we will try to help. As an example -

is mean physical, such as pinching or hitting; or is it emotional such as hurtful words? Is it a combination?

We have all been there - so if you detail what is happening we can give you constructive advice.

here are a very few examples of outside things contributing to "meaness" :
adult diapers that are too tight around her legs.
dental pain.
urinary tract infection (which can cause altered consiousness)
constipation
medication mix - or side effects
wrong time schedule for her circadian rythms
fear - as Carol suggested.

take care & write back soon
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PatsyTruadt, like you, I would be lost without my faith. It also helps to know what is within my control and what is outside of my control. Growing oder as a caregiver means I worry less because advanced caregiving is all about advanced acceptance, at least for me that is how my caregiving journey has evolved. I am touched as I read everyone's posts on this page. Your posts remind me that even though we may feel alone, when we have such a supportive community of fellow caregivers we are never alone. It is like being surrounded by a host of witnesses to the truth. Live strong, caregivers. There is tremendous strength in vulnerability.
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HELP....WHAT IS IT WITH THE THERMISTAT? (HOPE I SPELLED THAT RIGHT). MY MOM IS SO ALL ABOUT THE THERMISTAT, IT ONLY SAYS 73 IN HERE. I HAVE IT ON 78... WHY WONT IT GO TO 78. I SAY ARE YOU WARM, SHE IS ALWAYS IN SHORT SLEEVES AND IT SO HOT THAT YOU CANT STAND IT IN HER SM APT. WELL YES SHE SAYS, THEN ITS OK. IT 'S 8AM NOW SHE IS ALREADY MAD ABOUT IT. WHAT CAN I SAY ABOUT THIS STUFF TO HER TO STOP IT. OR IS THIS THE WAY ITS GOING TO BE. EVERY DAY GET HARDER AND HARDER. IM RUNNING OUT OF THE THINGS I NEED TO KEEP DOING THIS. IS IT ALWAYS GOING TO BE ONE THING OR ANOTHER WITH DEMENTIA. AND HOW DO YOU MAKE IT TO THE END OF IT AND STILL LOVE THEM. I WANT TO LOVE MY MOM BUT SHE IS GOING AWAY ON ME AND I CANT STOP IT. MY HEART IS BREAKING MORE EVERYDAY

TRACY
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It sounds like your mom feels the need to control something - anything - and this is her current choice. She knows that she is losing so much, and she can control this. Arguing will only make it worse. If you can adust it without her seeing you, she may not even notice for awhile. It will be a cat and mouse game. But arguing with people with dementia won't help, because in their mind they are right. Also, they are afraid.

You do need a break. Please contact your state human services department (type your state in online, and you should find their main site - then go from there. You should find a phone number). Ask if there is any respite care available in your town. If you can afford any in-home care at all, please get some. You need a break.

Most of us, once our loved one dies after years of dementia, have a long journey back to remember and love who they were before all the years of decline. I've written about that. It's a hard journey, but worth it.

However, now you are living the years of decline, and you are tying hard to love her as she is. That is admirable. You need help to hang on to that, and getting some help will, well, help.
Carol
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IT'S SO HARD, I NEVER THOUGHT THIS WOULD EVER HAPPEN TO MY MOTHER, SHE TRAVELED FOR WORK WAS THE TOP OF HER DEPARTMENT, NOW ITS ALL BUT GONE. IT SEEMS I GET SADDER AND SADDER EVER DAY FOR HER. I KNOW SHE KNOWS WHATS HAPPENING AND I KNOW SHE DOES NOT UNDERSTAND IT, SHIT I DONT HOW CAN SHE. THANK YOU CAROL, I BET YOU HELP MORE THEN YOU THINK YOU HELP. JUST TO KNOW THAT THERE ARE ALL OF YOU OUT THERE READING WHAT WE ARE SAYING. IT MAKE ALL THE DIFFERENCE. SO IM OFF TO MOM'S SHE IS HAVING HER HAIR CUT TODAY, IT WONT BE FUN BUT ATLEAST OVER FAST. WISH ME LUCK. THANK AGAIN AND I WILL LOOK INTO THAT.

TRACY
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Hello,

This past week my mother's sister who was 3 yrs. younger than my mother, passed away. We drove to the health care home where mother lives and told her. We were trying to think of a nice way to tell mother that she would not be able to attend the services for her sister. But we didn't have to. Mother called me and said that she wanted to send flowers but was not be able to go. Yesterday my brother came to visit her. That made mother's day. In my mother's eyes my brother is everything. Out of all of this the GOOD NEWS was after the visit with mother my brother, his wife, my husband
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Sorry the rest of my story didn't get printed out so I will finish it.

& myself went out to eat. I have never seen my brother so relaxed.

I'm trying to build a better relationship with mother, this will take time because we have never gotten along in the past. I was pushed out by things she would say to me. I want to do the right thing and what I feel God wants me to do. So far I don't have that mother daughter love that I have with my daughter.
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Sibling issues and problems with parents as we grew up do make it all harder when we are faced with their care. It sounds like you have a good heart and are a forgiving person, and that is good. Hopefully, you and your mother can feel closer as time passes, before her time to die. As long as she isn't abusing you, you'll likely feel it's worth the effort to show love and respect for her being your mother, if nothing else. Maybe she will be able to return those feelings and let you feel loved. I hope so.

Blessings to you,
Carol
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Lynn
I am so sorry about the death of your Mothers' sister.
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daddysgirl, being a caregiver, I can honestly state that there are moments of feeling sheer terror when there may be a moment of downtime and reality stares me in the face. Fortunately, those moments do not last for me. Those moments are entirely human and realistic when a caregiver faces the stark reality of a loved one's declining health and that you are "it." Yes, caregiving can be a "strange" experience, I would say. Allow yourself to feel what you are feeling
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195Austin

Thank you, Mother took things well and even called to tell me that she would not be able to make the trip for the funeral but wanted to send flowers.

Our son and one of our daughters and two of our grandsons were here for Thanksgiving and so I called the home where mother lives and had them to have her dressed, our son and my husband went and picked up mother so she could spent the day with family and get away from her room. Mother being mother had to get one stinging word at me before she left. I was nice to her and had to help her when she went to the bathroom. Mother is unable to take care of her personal needs. I don't know what she is looking for in me. I try as hard as I can to be the daughter I feel I should be and all I get is hurt. The words still ring in my ears. My husband doesn't want me to bring her to our family Christmas dinner. I'm pulled between do and don't. Mother will be 90 in three months and I keep thinking that this will be her last year (Christmas) with us. For me Christmas will be easier without having her her. But on the other hand I will feel bad knowing that she in alone. I'm realy torn on what to do. It is not easy getting mother her. It takes two men or two strong women to get mother here and back again. I'm not able to help with this. I could call for KAT to pick her up and take her back but I'm still opening myself up for more hurt full words that she is so good at.
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Dear Lynn -

deepest sympathy for your plight. I think that you are doing the right thing by attempting to heal the relationship with your mom and keep including her at holidays. One thing that might help you is if you can distance yourself from 'hurt feelings' over what she says. If she was a stranger - not your mom, how would you react to what she says. It is not easy when someone pushes buttons - especially during the holidays when there are already expectations and lots of family dynamics, but if you truly want peace with yourself, you will have to decide now what you really want out of the experience.

Some people will never stop the zingers - that is up to them. I don't know your mom, but I believe that you are a kind and sincere person who truly wishes to make things better. Perhaps if you want some tips on how to develop a thicker skin, you might start with realizing what your mom says has no bearing on who you are. I won't go into personal experience here - but hope that if you can truly bury any of the stuff that you are carrying around you will have a happier Christmas no matter what zinger your mom throws at you.

If you like, write down all the zingers here on this site - we have all experienced something similar. but if you name it it can no longer hurt. if you can laugh at it, it no longer stings.

Be happy & enjoy your family and the good that is out there. Maybe even your mom will chill out if she sees that she can't hit the target any more. Just give her a hug instead.

C
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Lynn
Would it be possible for you to take your mother a plate of food at Christmas after the rest of the family had there meal- I have been involved with the mother-husband situation and wanted to tell them both to shut and act like grownups.
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Cat you are right on about burying things I had wished I had done this with my mother in law while she was on earth. I did use this later with a co-worker later she was making me crazy one day I said so fire me - and we both started laughtng and are still good friends.
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195Austin
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