This roller coaster of my mom seeming like she would only live a week or two to her being perky, eating again and wanting to get rid of her 24 hour caregiver has me reeling. Summary - She lives at home, 86, cancer, weak can't walk without walker and at that very unsteady, urinary incontinence, diarrhea when she eats, diabetic. It is not safe for her to be home alone but now she says she doesn't need the care. (which she does). She is fiercely independent and strong willed which has gotten her this far. I am exhausted from the ups and downs and downright confused by this whole ride. My brother must think I'm crazy because when he finally gets around to calling her she's perfectly fine. I swear she is misdiagnosed and all her doctors have always been wrong.
Then when there is a burst of energy, the elder feels it is time to send away the caregivers, put aside the walker, and do everything they use to when they were 20 years younger.
As for the diarrhea when she eats, some elders develop intolerance to dairy products. That happened to my Dad so I got him Lactaid products to use instead, and that helped.
The first three years we lived in a two story house with separate bathrooms and a common eating area. That transition period included several really loud arguments and threats to move out. My "go to" for comfort and support was never family, but friends and therapy. I don't discuss mom with our family because I do understand their position and respect it. While they cannot help with mom, they do help me in other ways, sometimes financially. I still love them and her, realizing their difficult history is much older than me.
Two years ago, I got accepted into a graduate program. We moved to another state and into a single level apartment with 1 1/2 baths. I have an office on campus (I teach while in school) where I do have time alone. She gets one day a week with me where we run her errands and get groceries. If it is a good day, we have lunch at one of her favorite places. If it is not a good day (she's looking for a fight) I make lunch at home. It is the one day of the week I do not work. I make it a point to have the same routine every Saturday that includes all the tasks she would like to accomplish.
Socially, we don't go out. I have a very small circle of friends that understand my situation. As a grad student, I have to present at conferences, do research trips to other university libraries--this means time away from home. I try to schedule no more than four days away and do call her each evening to make sure she's eaten and gotten dressed.
It is very challenging and there are times I would like my life back--I had a relationship that ended soon after mom moved in. Mom is quite healthy and will be around for a while, but I have always said to her and in general, if the time comes that she needs more care than I am able to give, she and I will part ways. I am sure she doesn't believe this and takes it on everytime I say it. The last time we were with her friends and I said this, she responded with "if that happens you can just throw me in the trash!" I responded, "well that is an option too." I smiled and nothing more was said.
LindaLatina - I love your post, how you went to grad school and planned to care for your mom one day a week - good for you! I have longed to go to grad school, yet was so intimidated in schools that I blew my chance years back and dropped out before finishing the degree, after attending classes for 5 years and paying $34K. I still regret it, and wish I could make such time.
And I love your reply to your mom's assertion, in front of friends, "well, you may as well just throw me out with the trash..." and you saying with a smile, "well, that's an option too...." Super! Avoiding manipulation of shame is part of our need, and doing so without trying to lecture, or fight back, or engage further... thanks for the share, I love the humor. good luck with the school work: finish!
Recently, I was out of town for work and it was like a vacation - no chores, no housework, no cooking, and no potty duty with Mom! I put her in a nursing home for respite care, so I didn't have to worry about her. She wanted me to hire aides to care for her at home, but the logistics of that are overwhelming - and then sometimes she think she can be alone with no help, when she can't even get to the potty chair without help. She has arthritis and vascular dementia, moans, cries, says she does not want to live any more, and even the aide noticed that she gets angry and takes it out on me. I've lost count of how many falls she's had. Mom does not want to spend her money for aides, but I finally told her that I need this for my health or else I will wear out, and she had to accept it. She does realize that basically she is in a nursing home and I'm it, and if I break down, she will have to move to a care facility.
I have to admit that, after the last time she had a UTI and got so weak that she had to go to rehab, that it felt like a vacation. When she calls me to do things for her, get this and that, it is a lot, but hardest is the emotional labor, comforting her when she cries. I feel guilty because I do not enjoy caregiving... and can't conceal that from Mom, and she has some idea how difficult it is for me. I just tell her that now it is time in her life for her to be cared for.
These boards are a sanity saver! Truth is that sometimes caregiving just sucks, and only other caregivers know what we have to go through.
In April, I became severely anemic due to loss of blood, resulting in two hospitalization--one unit of blood for each hospitalization, then surgery to stop the bleeding. Recovery has been difficult. My husband went to a skilled nursing care center when I was admitted to the hospital in April. He is still there (June 30, 2017) as I'm too weak yet to take him home. I also developed sciatica (left side) and torn meniscus in my right knee (both of which I suspect resulted from physical demands of caring for someone with quadriplegia.
I am struggling with bringing him home. I don't want to submit myself to the emotional and physical impacts. This episode really scared me. On the other hand, he always asks me when he can come home. I respond that we need to take it day by day until I feel strong enough. In my heart, I know that skilled nursing makes more sense. I visit him every day, go with him to doc appointments, advocate for him, keep on top of related paperwork.
In answer to Shedampo's point "I am exhausted from the ups and downs and downright confused by this whole ride," I get it. No need for a video. Tell your brother that you are taking a break (a respite) and he or another family member needs to care for her. Alternatively, hire a 24x7 caretaker or arrange for assisted living. Get the family to help pay for expenses. (If your mother has a long term care insurance policy, use it.) Doesn't matter what your strong-willed mother (or your brother) has to say. Then follow through. Tell your brother that it's his turn. It is difficult, and has to be done. I've learned the hard way. Take care of yourself by being proactive.
Do you have durable power of attorney for her? If not, get it or have your brother get it. There may be a time when she needs the legal support. Same goes for a Living Will and Healthcare Proxy.
I hope this helps.
I found the unknown to be stressful. You can go years not knowing when you will get your life back. Thus, you cannot make any plans for your future. No one wants to live that way.
Hang in there, this too will pass. It is within your power to make this passing of time easier for you. So, set a day and time that is sacred for you and your needs. Arrange to have a caregiver on hand that mother pays for. Get a hair cut, go clothes shopping, have margaritas and nachos with a girlfriend - whatever makes you happy. You've earned it.
She would take her meds and supplements until she was feeling better and then stop. She didn't need them anymore she was better. Sigh.....I asked did she truly prefer to live in the hospital since the nurses were so much nicer than me?
Because I could make the arrangements right away....
When she resists something new.....assist or medical device, safety feature, new bed, furniture changes, in home help, new routine's, etc it goes one of two ways. I tell her the item is really for me and my sanity because I worry about her and this "X" will make me feel better and more confident leaving her at home even though I know she may not need it right now.
OR
As the Health & Safety Officer , I have Veto power on any safety related issue. Complaint denied. I will take thoughts into consideration but I have final decision.
It was a rough and bumpy ride but it's gotten better. Unfortunately it took a nasty fall doing something she shouldn't have for reality to sink in a bit and gain some trust in me, that I am truly looking out for her. Luckily 2 of my sibs have witnessed both mom and myself in action and know it's hard , frustrating WORK. I'm better at not taking things so personally as well which helps.
Walk away and take a break? Every single day. I use my dog as an excuse to get away , take a walk, and breathe.
One day at a time....
When I listen to the song "Werewolves in London" and I smile a little too big or too long at the line "Little old lady got mutilated late last night" I know it's time for a vacation.
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