i really don't know what I need or why I am exactly writing this but I am feeling so lost I need to do something. The last five years has been really rough with my mom. She has continually struggled with health and has had a steady decline over the last year or so. Five years ago my mom had a surgery that about took her from us...i will never forget the ICU code call and the sternal rub that she didn't respond to. since then my mom has become a shell of herself, she has moderate dementia, can only take care of her own ADL's with assist most often then not, falls continually (multiple falls a day sometimes, and at least two or more a week). we've been to the ER three or four times this year for various infections, and found out she has TIA's in march, and she had another surgery in July to clear her sinus cavity of the impaction that we found out after the fact was actually a staph infection. since the diagnosis of her TIA's we have come to realize that she probably has them a lot more often then we think, and has had them for a long time. She ended up in a rehab for 20 days in September, but since coming home has only went down hill more. Since coming home in October the doctors have said that there is nothing else they can do for the TIA's, they can't figure out where the clots come from or what causes them. They don't know why her health is failing in general, why she is falling, or anything else other then to say that her body is starting to fail her in general.
We've had the discussions as a family to plan for next steps, and to talk about what to do if mom were to have a serious stroke. I struggle with all of these discussions, and though overall i agree with the decisions I really struggle with losing my mom. I have lost parts of her so long ago i feel foolish missing what we had, but I miss her. I don't know what I need but I need to feel better, or learn to cope with all this without going crazy. I work in a high stress job and have two high schoolers and stay incredibly busy keeping up with them. Most of the time I feel like I am just one slip from losing my mind and everything in life. Is this normal? does it get better? any ideas how to cope and live with this all!?
Also, it's been my experience that you can't get psychological counseling in a hurry, so you want to start the process before you reach the end of your rope.
Instead of starting in with a wheelchair, has your mom tried a walker along with physical and occupational therapy to build up the strength to use it? That could keep her from falling so much.
If she wants to keep on living even semi-independently, being able to move around is very important. Once you're confined to a wheelchair, things might get worse even faster. If she is serious fall risk, which seem to the case, getting in and out of a wheelchair can be dangerous hard work. Once you get to the point where you are dependent on others to transfer you between bed, wheelchair, dining chairs, and comfy chair, your life becomes extremely limited.
If you decide she needs a wheelchair, there might be agencies in your town that will GIVE her a wheelchair if you're having trouble getting the doctor to prescribe one. In Austin, TX, the Austin Groups for the Elderly (AGE) will give you whatever equipment you need. You just give it back when you no longer need it.
No matter how much or how little we try to contribute to helping our parents, it is quite stressful as we are put into a situation where we had no training, especially those of us who never raised children.
I know I am constantly thinking why don't my parents hire people to help them out, or use the home delivery of groceries. Good heavens, that is what I am doing for myself because I don't have the time or energy to fix or shop for myself :(
It sounds as if you need to add space to grieve and space for extra time with your mother to that huge schedule you've already got on your hands. The good news is that it sounds as if your family network is fantastically supportive. The bad news is that probably no one can do much to alter or delay your mother's illness. This is going to be a horrible time; you're allowed to be upset, you're allowed time off, you're allowed to seek help. Let people help you, let them share. You will get through this, just don't expect anything to feel okay while it's actually happening xxx
Your sisters are nearby and your plate is full. My instincts say that showing your sisters support would be time well spent. Do they have things they need or want to make their lives better? Would it make it better if your mother was in a nursing facility where family could visit and she wouldn't fall so often? There are some very good nursing facilities available if your sisters need help. They and you are important, and it is not failing to get help when it is needed. None of us like to consider the possibility of putting our family in long-term care, but when things become too bad it can actually be a good option to consider.
My mother has Alzheimer has for quite sometime. I did everything to keep her living in her house. There was someone with mom 24 hrs, Most of the help came from family who had their own family along with physical/mental health issues going on. I even hired an agency to help out and that was just eating away at the money. This consumed me like you wouldn't believe it...I cut my hours to part time , thank god for my husbands income. Mom also had two falls less then three months apart that result in two surgeries and rehab. My sister who lived with her decided to move out when mom was in rehab the second time, so as you can see it just wasn't getting better. I was doing my best to keep myself together but the stress was huge and it was all coming down. When she had her second injury a broken hip I decided to put her in the nursing home, actually the one she was in rehab the second time. I always say it was the toughest but best decision I made. I still have matters to take care of for mom but I finally understand the importance of taking care of yourself and sometime it means to make difficult decisions.
I received one piece of advice here that helped me immeasurably as my Mom was aging. It was suggested that I tell her I love her and hug her every day, or when ever possible.
It did indeed become more and more difficult and then one day my Mom passed away. For all the years I have to live that are ahead of me, I know that I treated her with kindness and compassion, to the extent that I could and I am thankful that I told her that I loved her and hugged her whenever I could. Now, it's over.
Did it ever get better? It's all a matter of perspective. I'm thankful for the time I had with her, although it was the MOST challenging time of my life. I wish for you the same... that you can navigate this time with grace and compassion for YOURSELF as well as for others.
Take very good care of yourself, while you are caring for others. Do everything you can for you, because you (and everyone around you) needs YOU to survive this.
As for the health issues - this is just my personal perspective, but with my dad, I am mainly concerned with keeping him as comfortable as possible, not necessarily resolving every medical issue he has. The reason is that I believe that it's his time to go. Dementia is a fatal disease and he's never going to truly get better or be himself again. I hope for his sake that his suffering can end sooner than later. So for that reason I don't worry too much about the medical issues, simply because I can't. There's just too much and it's overwhelming. I have to trust his doctors to do what they need to do.
But, I don't what to suggest regarding the falls, especially if your mom's falling even while being assisted. Will the wheelchair help or will she still try to get up and move around on her own? If you really think that the wheelchair is going to help, then look around your town for a used one. Check Craigslist, thrift shops, garage sales, auctions, flea markets, or a church if you or your sisters belong to one. The good thing is that things like that (walkers, chairs, other mobility aids) are relatively easy to find used. Who knows, depending on the insurance, it might even be cheaper to find your own if there's a co-pay involved.
On another note, my mom died at 81, having never been sick a day in her life. My dad, now at 91, has spent the last 10 years struggling with many health issues. Given my new perspective, if I could choose, I would have preferred to remember my dad as I do my mom and I would prefer to go as she did...making cookies.
Have you involved Hospice? They have been helpful to have others involved in my dad's care, but I think he's not going to make "the cut" soon for their care.
Hang in there, cjaharmon...I'm so glad for you that you have sibling support!
Also, there are places around to get a wheelchair for free. Ask around. Peace.
Try not to do everything yourself! Take time for yourself..