This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
P.S.... buy yourself a huggable lovable doll. When you're feeling down, scared - you're never too old to hug that doll for comfort. I have 2 animal neck warmers. They are so soft. I have the horse on my lap while typing here. At nights, I have the frog to hold up my kindle. Or if I sleep on my back, I drape it over my tummy. They're not dolls, but I do find comfort from it. /// I wish you well. And will say a prayer for you. {{{{ HUGS }}}}
See how that works? You're not dying soon, right? But YOU need support as does your family whether you realize it or not. It sounds like you are on the edge.
Hospice is not only support for the one who is dying. They are a valuable resource for everyone involved. When my dad was diagnosed with a very aggressive cancer, I was devastated and didn't know WHAT to do. I did reach out to hospice though and they were there from the beginning until my dad's death and continued to support us for a year later with grief counseling.
In my experience with hospice, it's not what some people think - that they are there just to inject morphine every now and then and hasten your loved ones death. That's far, far from the real situation.
Most of us are not equipped to deal with a dying loved one. I know I wasn't, not medically, emotionally, spiritually and even in the realm of dealing with the reams of paperwork and forms a death entails. Hospice provides guidance for negotiating those really hard days. They're also on call 24/7. When my dad had a seizure at 3 a.m., they were there. When, mentally, I absolutely couldn't take it anymore, they were there.
For you and your family, I'd call in hospice. It is really a VERY respectful thing to do, especially if you think she is fearful and she has lost her way in her faith. You can give that back to her - a very big gift at a very important time. No matter your faith, a person from your religion will play as big a role, or as little a role, as your loved one and family requests.
My family was also a "pull yourself up from your bootstraps" and respect your elder's wishes type. But when they kind of lose their sense of reality, my dad, brain cancer, do you really want them, well, in charge? The same goes for dementia and late stage cancer of any type.
Hospice is comfort care, and for me, they were a blessing.
Maybe you'll reach a point where you'll just call them visiting nurses. Whatever works. They'll bathe your MIL, give you 10 hours a week of "off" time, monitor her meds and arrange for folks from her church to give you additional respite time.
She IS being selfish. She is trying to control things until the bitter end no matter what toll it takes on you. I know. I'm still dealing with that with my mom who lives in assisted living that sucked the life out of my dad and is now trying to do that to me. I know the routine.
All I know is my dad was a wonderful person and the journey was a lot less scary with hospice. I honestly don't know what I would've done without them.
Another point about fatalism: I respect your MIL's decision not to continue with the myeloma treatment; but I hope she doesn't extend that to rejecting all medical options. If the heart failure is making her breathless, for example, maybe her diuretic wants reviewing - I wonder if she is accepting all of the palliative measures that might do a lot to make her more comfortable?
My dad also called around. He found a program in the senior citizen department - that provides 4 hours caregiver respite. They will stay and take care of my bedridden mom, while he can go out and do whatever he wants. He refused. He'd much rather stay home and talk with them. This program is half local funding and half federal funding. You may want to try calling your senior citizen local gov't department to find out what programs they have.
As i see it you have three problems
1 the loss of your job and independence
2 the totally unaccepible way your husband has treated and is treating you.
3 Coping with your dying MIL.
1 and 2 can be set aside temperorally because from your description MIL will die within a very few weeks. Call in hospice now. If this has not been done obtain POA financial and medical and if possible have her sign a DNA (do not recusitate order). Hospice can help with all these but you may need an attorney. Call hospice today it is not too soon and she will qualify and they will send you some help. if not when an emergency occurs do not hesitate to send her to the ER where they will probably admit her for a few days and transfer to a N/H. Tell hubby if he takes her home you will not be there to take care of her and mean it. Her assets will be used for her care neither you nor hubby will have to pay. If she owns the house that will be claimed by medicare as an asset so you will be homeless.
I know you are feeling desperate and trapped at the moment but if you can manage to suck it up for a few more weeks you will be more able to calmy look at your own situation and move forward.
1 and 2 are different problems and can wait.
You will work again and it won't be long so hang ont to that.
There are far deeper problems with hubby that the current situation so now is not the time to address them. They have been there for a very long time so need to be adressed calmly at a later time. By all means get some councilling now to help you through the final stages of MILs life but the real work is yet to come.
Hubby is in total denial and simply may not be able to help with his mother but that is not to say he can't help you. He can do the shopping for example and other things outside the home you normally take care of.
Try and ignore MILs hurtful comments you are the closest target for her to lash out at and her thinking is becomming skewed but remember you are the only one bringing comfort to this poor woman as she approaches her death so try and be merciful. God won't mind if you skip church for now as long as you continue to believe and prey
I am one state away in AL, so I know what you're talking about with the rain. It feels like it has been raining since 2012. It makes caregiving so much harder and so much gloomier.
Do you have hospice helping? Some of the hospice organizations will give you some respite hours once or twice a week. If you don't have hospice already, your MIL could qualify for it. That would be very nice for you to have help at home.
Sophe, so much going on, too many caregiving. I feel so bad for you and your husband. That’s my greatest fear – of dad accusing me of stealing his money – and having to prove that I’m not. My maternal grandmother, who had dementia, did just that. My aunties/uncles had to go to court and prove that they didn’t misuse her money.
Gawomen – Yes, she’s your mother-in-law (MIL). But she is your husband’s mother. I did not like the part about him telling you that you have to quit your job to take care of her. That must have hurt. It would if it was me. FIRST, I would call back work and ask if there is a possibility of you coming back, if there’s an opening. SECOND, I will start trying to find resources for your MIL. She can go to adult daycare (don’t word it like this – they will say they’re not a baby to go to daycare.) but it will cost money. See if she qualifies for Medicaid. Worse case scenario, maybe MIL can go to daycare 2 or 3 times a week. THIRD, prepare for your heart-to-heart talk with husband. Explain what it meant for you to give up your job to take care of HIS mother. State that she is being mean and abusive to you. And you will Not Accept this any more. He will need to help you with His mother. But he most likely won’t. Unless you go on strike. Have any relatives you can go visit for several weeks?
We are still planning to move both Mom and Dad and feel like we are rushing against a clock. Dad wants to move ASAP knowing that he will be leaving sooner than Mom and wants the peace of knowing that she will be safe. I will still be moving around the block from my sister and hopefully doing so by May 1st. I will be taking off work in two weeks to get my move completed, my parent's move completed, care takers and hospice in place, etc.
My dad is getting weaker every day and can no longer help with things and feels terrible about that. My siblings and I are still working this together and quite frankly I can not imagine doing this without them as so many of you seem to be doing.
Since finding out the news about my father my mother's dementia seems to have gotten worse. She is as pleasant as can be, kind, funny, sweet, etc. but she is telling all kinds of stories and making up all kinds of things as she goes along. Her response to my father's news is that she does not want to talk about feelings when there is nothing she can do about it. This is kind of realistic I suppose. My aunt, Mom's sister, tells me that she was always like that. She found her father dead in their home, attended the funeral and then went back to dancing. This is kind of weird to me but possibly quite realistic.
She is continuing with therapy and trying to walk again and I am still hopeful that she might, but then again maybe not. It is too hectic to really get a good read on anything. This is really hard and it is hard to find a minute to even stop and breath.
Thanks for listening.
Cut her as much slack as you can, meanwhile. She shouldn't be mean to you and it isn't fair, but always remember that she must feel like seven shades of the proverbial. Any one of those conditions would wipe her out - all of them together are a heck of a lot for her to bear - that's why she's being horrible.
It is not fair that your husband would tell you to quit, why didn't he quit if he wants HIS mother in his home? Why doesn't he pay for some respite time for you so you can get away at least once a week? You are right, you did not sign up for this. Perhaps some marital counseling is in order. Maybe get a geriatric care manager involved to help all three of you. Others will chime in soon.
The next step is to get her to see her doctor. Again, it's best to see a geriatrician (specializes in elder people's health issues). These doctors are sharper at identifying elderly's issues like dementia, etc... They are not so easily fooled as a regular doctor. If no geriatrician, perhaps request to see a neurologist, etc..
So, she's sad when you mentioned her seeing a doctor. Why does this stop you from taking her? It's for her own good, and it's best to catch her dementia early - so that meds can be prescribed to slow down the disease.
Don't tell her that she's going to be seen for dementia. Just say that she's going to see her doctor for her yearly physical. When you go with her, slip a brief note for the doctor to read - about her symptoms. Will she allow you to go in with her? And that you can walk out of the room if it's exam time?
My dad Knows he's forgetful. He keeps complaining that he's getting more and more forgetful. But he still refuses to go to the clinic. Denial.
Whatever you do, don't wait until she's lost. By then, it's too late. If she has an emergency medical issue, call 911, go to the ER, they will NOT allow you in with her. Due to the HIPAA law, her medical health issues is very private.
I took my mom to the ER. She was completely vegetative state. Couldn't move at all or talk or comprehend. I was 'encouraged' to go and eat lunch in the cafeteria. When I sat down to look in my purse to see if I had money, the doctor walked into mom's cubicle and the nurse discussed mom's situation. When I returned from lunch, no one told me anything about mom. I was just given her prescription orders and the release form. When I got home, and the home care nurse came in, I showed them the release form. Mom had bronchitis.
The same when I took dad to the ER. Again, I was asked to sit outside of the ER. When they released dad, they told me nothing. So, don't wait until it's too late. Or your hands will be tied.
He was fortunate I had no clue to the reality of what a severe stroke (taking 2/3rd of his brain and leaving a 99% inclusion of right coratic artery) would do to my life. He handled it all and then the roles reversed. The time had come for me to step up to the plate and follow through on a promise i made without the knowledge of what it ment.
His current condition has grown into a medical monster. Includes: Grand mall siezures every 3 mos, tremmors 2xs daily that I always have to stop the bus and muster up the extra attention needed to comfort his fear, daily chest pains ( two stints put in after stroke and now hes a cardiac patient), incontinence (daily conversations yes youll have a BM and no i wont give you more colac and senna), chronic pain from arthritis and many old injuries including five areas of broken bones that require massaging and therapy a couple times a day, hes blind on one side and is so week from the two clots just found he cant even throw the blankets off his body. There's mire including PTSD from military service in Vietnam war And multiple complications due to agent orange. Still fighting w va to get him 100% disabIlity.
I sleep never and his care is so time demading that I never have a moment to attend to any financial responsibilities.
I have absolutely no help from his family. Rediculous trailer trash self serving kids do nothing but accuse me of manipulation. Even though i have been involved as a family member for 9 years.
Lately i have had an explosive temper w rage that is hard to hold back. Everyday my life is taken away from me and im forced to live with the stress of everything ghat touches his life. Advacting for his medical care sends me soaring through the roof. Dr and nurses and hospital staff can demonstrate what STUPID looks like. My patience is gone and if a person crosses me I will come unhinged on them.
I hate what this kind of life i have now. I used to have privacy and spent time alone reading hangi g out with my three doxis. I road my harley everyday everywhere. I had a man who pulled my motorcycle out of the shop and had it waiting for me when i came out.
I'm bitter because itll not get any better for me even if he dies. I still have a funeral ahead to take care of. His family will be furious after they learn he wiiled it all to me. Plus, i'll have to get a job to provide for myself.
I love my man. I have lost so much in 20 mos. I even had to put down two dogs that were my everything. Within a 3mos period.
I dont blame him at all. I just wished i had more hours so i could sleep. Feeling hopeless about my future.
She said, "You don't know what it's like to be a parent. To have children and fear for them. You don't know what it's like to lose someone."
I snapped back, "I put my whole damn life on hold for mom and dad. I did not marry. I did not have children, etc...."
Oldest-bro-of-next door and SIL came immediately down. Both of them told me to 'let it go.' I refused to let it go. I have withheld so much within. I refused to let it go. Why does it always have to be ME to let it go? So, I turned to my bro and SIL and said, "I put my life to help mom and dad. Sis KNEW that I wanted to leave this island to live in the states. How do you know that I didn't want to marry? Or to have kids? YOU SEE HOW I AM WITH CHILDREN!" SIL stopped telling me to 'let it go'. She turned away from me and started crying.
I stayed in the kitchen, crying, while fave sis was in the livingroom crying. When I heard her leave the livingroom to go outside, I opened the kitchen door (separates the livingroom/kitchen) and went to my bedroom, locked the door, turned on the air con, laid on bed and tried not to cry.
I heard knocking on my bedroom door. It was Her. I knew that she will keep knocking until I opened the door. I told her a few weeks ago that I've been having suicidal thoughts. And decided to go to my doctor and ask for anti-depressants. Sis will not leave me alone in my bedroom. So, I opened the door. She was crying profusely, kept apologizing and hugged me so tightly. I was stiff against her, and half-heartedly hugged her. I was still hurting from her words. I cannot erase it. It's ringing in my head, going round and round. Crying as I type this, over 5 hours after the incident. She refused to let me stay in the bedroom. I went out on the porch, crying - because I cannot have her in my bedroom, my sanctuary. I'd rather cry in public than have her stay in my room.
The rest of my afternoon was ruined. Sis kept me on a tight leash. 'K, where are you going?" over and over, every time I got up from the chair. She kept trying to draw me out, smiling, encouraging me to enjoy myself. I just sat there, smiling quick ones to just get her off my back.
While on the porch around 4pm, her shopping bags fell off the table to the floor. About 15 minutes later, her heavy purse fell from the same table onto the floor. No one was near the table. Then another 15 minutes later, the food cover flew off the food and hit her. Sis said she's sorry. That my 'spirits' are getting back at her for getting mad at me.
She finally left at 5pm. It was just SIL and I on the porch. I said, "Thank goodness she left. I'm very exhausted. I need a nap." SIL told me to go ahead and go in. She will clean up the porch (put the food away, clear the table, etc...) I went in, knocked out in the livingroom. Dad woke me up at 6pm. He said that if I kept sleeping, I won't be able to sleep tonight.
I've been crying again off and on throughout the evening. I had just finished crying when I heard a knock on the livingroom door. Teacher niece came in. She asked me how I'm doing. I started crying again. Niece said that she hasn't heard me get mad in a long time. I told her that I keep everything inside. When I'm pushed too far, I let it out. And when I'm letting it out, and someone tells me to just 'let it go' (like her parents), it just pisses me off more. Because I've been letting things go and keeping it all inside. So, once I let it out, I will let it out. Don't tell me to 'let it go.'
Anyway, niece said that her brother (the one whom my sister's 3 year old grandson was playing ball with - and disappeared with) said that my sister saw him and her grandson walking to the back of the house. Obviously, sis does not remember this in her panic. And practically yelled at me, and said those hurtful words to me. Niece said that everyone noticed how withdrawn I was during the party. What can I say? I didn't want to be there and pretend that everything is honkey-dory.
I woke up from my nap just amazed that my sinus is not clogged up. Those sinus massages are something else! It really works. By the way, I ate a new food today. I hesitated in eating it since my allergies are in overdrive. I ate it - all. And I immediately got what I thought was a mosquito bite. But when it got bigger, I showed it to fave niece. She took one look and said, "Aunty, did you take your allergy pill?" No, I thought it was a mosquito bite. I took the pill in time. My lips started tingling and my tongue felt funny. I ate a food called 'tapioca'. I guess I will need to add that to my ever growing 'not to eat' list.
FF are you on meds for high B/P? maybe it is running too low. Try and not go down or up too fast just take your time and stop half way if you have too. (Getting something on the bottom shelf stop at the middle one and read a label) can you take a fan into your office to blow cool air on you. Put a bowl of ice on the air vent. Get one of those cloths the runners use to keep cool and have it round your neck. i am full of helpful hints aren't i? she who simply stopped her periods at 45 and never looked back. I did wear all cotton tops for a few years but that was it and resisted being pushed into HRT - glad I did now. I can relate to the feeling when getting up though my B/P swings like a pendulum and my arteries could use a good dose of draino.