My mom had a mini stroke in November. She was in ICU for 3 days, hospital 1 week, and rehab a week. She has no damage from the stroke. Nothing showed on cat scans. They changed her bp meds and she returned back to the hospital for complications. Meds adjusted. She can't lift her left arm, her hand works nothing to do with stroke. The nerve is compromised between her c5 and c6. Problem is when she left the hospital my sister and I decided it would be good for mom to come home with me for a couple of weeks to get her strength back. It's 5 months later and she still here. I'm at my wits end. I've never been so exhausted in my life. I cook, clean, take her to dr. Appts. Everything! My sister comes by 2x a weeks and gets her in the shower. That's it! She doesn't want rehab, refuses to get an MRI on her neck to try and get her arm working and wants me to do everything. I try to explain that she has to get up and move around to get to feeling stronger and build her stamina back up. She still says she can't walk stable even though the 2x she had in house rehab she did just fine. They put her on blood thinners and she complains its cold even though I keep it warm to the point we closed our vent in our bedroom because it's too hot. She wants to just sit in the chair and do nothing. Insist she can't. I'm so frustrated and tired. I can't do this anymore. I'm so mentally and physically drained. It's getting worse every day. I try to explain that we've got to get her back home and get thing back to normal. My dad died 15 years ago and shes always depended on me and my sister for dr. appts. Groceries, yardwork shopping, everything. Then we would get the guilt trip constantly. I dont feel like cooking can you bring me something. This got to be almost daily. It's always been something. As if we dont have a life. Im so tired of feeling guilty. I'm tired of her sucking every drop of energy I have left. I beg my sister for help and tell her I'm so stressed out to the point my chest hurts. I dont want to get up in the morning knowing it starts all over again. My sister comes by 2x week and give her a shower paints her nails brings her goodies talks to her like shes a baby, spoon feeds her and yes I said spoon feeds her. I try to tell her this is wrong and it makes my job harder. She actually lives 1 street over from me and can only help 2x a weeks for a max of 1.5 hours . Shes works 8 to 3 no husband no kids just her and her dog and I don't work. So she justifies it that way. Ive always been the one to do everything for everyone because "i don't have a job". I just want my mother independent and back in her home so I can have my life back. I want to help my daughter and help her get ready for my 1st grandbaby. I have always been close to my daughters we would always do everything together. I miss that so much and they do too. My husband has been so understanding until now. Its putting a strain in our marriage. He sees how this situation has turned the longer it goes on. She doesnt want to be left alone. Shes scared she might fall or she doesnt feel good. Wants to know how long I'll be gone. I cry myself to sleep. I dont even fix my hair anymore. I rarely get out of the house. I'm losing my will and feel like it's all hopeless anymore. Someone please give me advice. I don't know what do. She wouldn't go to her last dr. Appt to do bloodwork. I had to reschedule it. I have 1 daughter at home that works and is about to graduate. She sees the stress I'm under and tells me this is wrong that nobody helps me and how my mom acts like she cant do anything for herself. Can you bring me this or will you hand me that constantly. Now she will actually call me on my phone in the house and ask me to do something for her. I feel so guilty for my feelings. I have so many mixed emotions. It's only been 4 months and I'm falling apart. I'm seriously considering a psychiatrist.
So good to hear back from you with all your replies.
Dont worry about your answers being long. The more info we receive the better answers you are likely to get.
I think it’s great your mom doesn’t want to see a plethora of doctors. If she has a good primary he or she can manage most and will be the right person to ask your mother to see the others. My own mother only wanted to see her cardiologist (CHF no AFIB and on blood thinners and fluid pills) but when he asked me to find a primary to work with HH etc she was willing to oblige. But she only saw each doctor once a year and usually all on the same day. By the way, since your mother has medical issues that require less than 24/7 medical care, she might qualify for homebound Home Health. That will enable fewer doctor appointments. They can do the blood work, give the baths. Track her vitals, order PT and OT when needed and set up her pill boxes. You can have them start at your home and transition to hers and then to ALF when she goes.
But please hold a vision of your grand baby in mind when you make your decisions.
Each time you say yes to her you are most likely saying no to yourself and most likely someone else. I am not suggesting you neglect her. Quiet the contrary.
If she is an invalid with many demands then she needs to be where there are trained professionals.
But do know and I’m sure you hate this part, YOU are making the decision to allow your mom to run YOUR life. SHE can’t do it without your permission.
What on earth do you have to feel 'guilty' for, by the way? SHE is the one who should be feeling guilty for taking such terrible advantage of you for these months now which have dragged on, thanks to her sheer laziness and refusal to lift a finger. She's reverting back to being a toddler right before your very eyes because you are enabling that behavior. Stop doing so immediately.
Did you know the statistics about 30% of caregivers dying BEFORE the elder they're caring for? And for those left over who don't die, there is a high rate of deep depression and auto-immune system diseases to suffer.
Your mother is fine and will do fine on her own or in AL. Give her that choice right away now and move on with YOUR life before it's too late! Good luck!
#1 Fear is my guess. Fear & denial *if I don't go to other Doctors then nothing is wrong with me*
Some people do choose to live their lives, just taking what comes, not running to different Doctors all the time. That's fine, I can respect that (but I don't suspect that here).
I have two relatives that often refuse medical treatment as their default position. After one refusal, it came to light the complete lack of understanding of what was proposed. A'ha. Also refusing tests as worried about small details - like having to undress, minor discomfort or getting to the appointment, rather than the ACTUAL reason for the test. *Lack of insight* Could that be happening?
Okay.
#1 Why?
#2 So, what does her primary recommend?
Your mother shouldn't be living with you. You must find an alternative.
Mini stroke, bp meds, blood thinners - your mother has heart disease, does she? It would explain her fatigue and her constant sensation of almost panicky anxiety. Does she have AFib? Has she had an echocardiogram done?
But essentially, you and your sister have spent fifteen years training your mother to depend on you and you're not going to train her back out of it in a day. The key point to take away, though, is that although it will be a slow process with ups and downs, it can be done.
Not only can it be done, for your mother's own sake it needs to be done. It is not nice for your mother to feel as she does, and it is not nice for any self-respecting adult to be treated like a spoiled baby.
First of all - Is there a facility near you that offers respite care? You are so stressed and exhausted that I can't see how you can possibly think straight unless you get a proper break for a few days. Failing that, your sister must sometimes get time off from work doesn't she? Maybe she can take a few days' leave and come and stay at your house to care for your mother while you and your husband get away out of town.
My Mum has had TIAs/stroke, now Afib. Starting to walk again post stroke 2 years (wonderful) but will be dependant from now on. Fact. Dad's come to terms with that. It's either him, more carers or NH.
I noticed that she was eating with her left hand. I pointed it out to the therapist and they did a “drop arm test”. With therapy her muscles developed enough strength that she could use her arm. And we did spoon feed her when she was getting it rehabbed. It didn’t take but a day or two for her to be able to use it. She had therapy the rest of her life to make sure she could retain the use of her arm and she lived in her own home alone.
WHO CARES if she gets upset. Make that clear please. The next time she calls you on the phone you go get that phone out of her hand, take the batteries out of it, open the window and throw it. (my frugal nature makes me say watch where you throw it so you can get it later). You don’t have to say a word. She’ll get the message.
If it’s a cell phone. BLOCK HER NUMBER. Tell her you are not her servant. She is not welcome to live with you indefinitely and she will NOT be deciding to not participate in medical care that would return her to her own home.
Like the Oakridge Boys song.
You Don't Have To Go Home (BUT ONE THINGS FOR CERTAIN) (You Can't Stay Here). I wonder if you could get that for a ring tone?
She can go home to live in a sauna. Or better yet, just pack her belongings and deliver her to sister. Let sister decide if she wants to keep her or take her home. Call that STEP TWO. She will have some time alone before STEP THREE going home.
You get her out of that bedroom and start outfitting it for a nursery.
I really do believe that she has the right to go or not go to doctors appointments as she chooses but she doesn’t have the right to camp out at your house under the pretense of it’s just until she gets better.
Set a date. Move her out. I suspect she’ll be happy to go to ALF when she has to start caring for herself.
And I also think there is a little more to the stroke with the long hospital stay but she still needs to go at least to sisters.
Secondly, I apologize if I am too blunt...
You said " I just want my mother independent and back in her home so I can have my life back". Yes indeed! But...
But what I want to ask you is what if your Mother CAN'T become independent? What's next?
You've been working so hard. Too hard to look up or ahead. Take a long drive, or have a long bath, get some thinking space to look up & reassess the whole situation.
Are you able to speak to her doctor? Has she given you permission to have access to her medical records? If so, call and leave a message for her primary doctor to return your call. Start there. Ask if there is a social worker that you can speak with. Tell them everything you said to us. See what they recommend.
Have you contacted Council on Aging in your area? They can give you a few hours a month respite care. They will help bathe, prepare light meals, tidy up your mom’s room, sit with her, usually four hour shifts. You can get have a short break for you!
Best wishes to you and your family. Others will have suggestions too.
If caregiving is becoming too much of a burden tell the social worker that you want information on what is needed for placing your mom in a facility.
How old is she?
You need to understand her medical condition in more detail. A mini stroke does not put a person in ICU for 3 days - so what was all that about?
Where is your mother's home, how far away from you and your sister? What's being done with it at the moment?
How is she off for money? - assets and income.
Who are you and your sister talking to about elder care planning?
To transition your mother successfully away from her dependence on her children and back towards more independence combined with any support she really does need, you need outside help. Let's start exploring those options.
But the bottom line is: you and your husband decide who lives in your house. And that is shortly NOT going to include your mother.