I'm not a full time caregiver to my mom, but I help my dad out a lot since she's retired and he's still working full time; since I also work full time, we tag team a lot and I feel like I often am used as her emotional outlet. Oftentimes I feel like I'm too young to be dealing with the issues my mom has because I just turned 31 but ever since a head injury 4 years ago forced her to retire, mom's health and emotional/mental stability has been on a decline. I often feel guilty for needing a break from her - because she'll constantly text, call, or email me. She's always wanting to come over and she'll even sneak over to my house on the premise of "dropping something off" and then stay for hours, even if we tell her we have plans or are expecting guests, then she'll act hurt, as if us having plans prior to her showing up announced was purposeful. If I don't answer a text right away, she'll go behind my back and text my husband. She often repeats herself, telling the same stories or asking repeatedly when I'll be picking her up to run errands. She will send novel-length texts multiple times a day (even when I am at work) and if I do not respond, will get her feelings hurt. Sometimes when I call to check in on her, she'll randomly start crying and I often feel like its an attempt to make me feel bad and come over to her house. Every time I'm around her, I am left feeling drained, negative, and angry because conversations with her always focus on what's wrong, and never anything positive. It's put a lot of strain on my marriage because my husband is my only outlet for my frustration.
My dad, who is a mental health professional, seems to have blinders when it comes to my mom and even though I've asked multiple times to get her into therapy or on medication because it is clear to me that she's depressed, he refuses to listen. They also wait until things get really bad to go to the doctor, which often ends up in ER trips and hospital admittance for my mom. I can't count the number of times I was called with the "mom's in the ER" message in the past year and half and had to leave work.
My brother lives across the country and hasn't been to visit in over a year, so I feel like the burden of care is fully on me and my dad.
To top it all off, I feel so much guilt for being frustrated with her because she's my mom, and she raised me. But her inability to look at how she talks, acts, and communicates with us is very trying. I know much of it has to do with the brain injury, but she has always been a more negative person. I simply can't imagine decades more of this. Is anyone in the same boat? What have you done to assuage the guilt and frustration?
My mom was a severe cycling agoraphobic, and also had a severe eating disorder. From my early childhood, that was my “normal”. At 85, she had a severe stroke which damaged her language functions, but stubborn as she was, she absolutely refused all therapy services and rehabbed herself, returning after a 2 day hospitalization to the home where she had lived by herself.
Five years later, she fell and broke her hip. Following hip replacement surgery, her degree of dementia finally both obligated and allowed me to assume her full time care.
As you can tell from many of the responses you’ve received, situations like your mom’s may be very individual in their original causes, but are not at all unusual in the resulting guilt, and the confusion about who should be doing what.
Is it accurate to infer from what you’ve said, that you may bear a heavy measure of guilt for her care without having the capacity to take action in managing her needs?
Relying on your dad to objectively address her management and care doesn’t seem to be working that well for any of the three (or really FOUR) of you, and attempting to meet “expectations” that you’ve put on yourself must certainly be exhausting AND guilt producing.
In my situation, I found a therapist, actually not a particularly skilled one, but AT VERY LEAST someone to whom I could vent.
What you’ve been doing is too much, and your father’s “blinders” are serving the on going lack of balance in the team.
The “water-on-stone” technique may help you, if you can convince yourself to try it. Restating a need calmly as many times as needed to get through to your dad is certainly a worthy and immediate goal.
When if ever was your mom’s previous comprehensive neurological evaluation? Affective status can (and should) be addressed then.
FINALLY, although you’re apparently doing the tasks of at least 3 1/2 caregivers, give yourself a pat on the back for getting this far, and I’ll give you one too. You deserve it!
I went through this for many years with my mom as well, the calls, texts, hospital visits, self-created "crises", etc. and we recently moved her to a facility, but she has had many issues there too, and is currently in a geriatric psych unit because of another episode this past week. Part of it is her natural personality, like your mom very negative, depressive and emotionally dependent, but she went into a diabetic coma 7 years ago, and has been paranoid and delusional, and getting steadily worse since, now having memory problems too. It sounds like the brain injury your mom sustained may be causing some dementia like symptoms and exacerbating her already troubling personality issues.
Any chance you could call her doctor and let them know what's going on with her? They won't be able to discuss her health with you if you don't have a signed HIPAA release, but you can give them helpful information to relay to her doctor and ask if he/she could give her a referral to a neurologist.
I'd start there and see what they can do. A neurologist will be helpful in being able to assess your mom and determine the best course of treatment, and finding medications that can help.
In the meantime, take care of you and your marriage, and don't feel guilty about setting boundaries. She will probably cry and be upset, but just assure her you love her and will talk to her soon at the next agreed-upon day and time. Don't feel bad either about saying, "I have to go, I'll talk to you later" and ending the conversation if it becomes too draining.
Get a neurologist to examine her to see if she has this. Typically this causes their behavior to change, repeating then follows until speech is impossible. Now incontinence too. Many OCD habits.
If you do nothing else get her legal affairs in order while you can. See an elder Care attorney for medical and non medical POA, Directives etc!!
Good luck to you!! I am in the thick of it now and my sister is helpless!!
My elderly mother (who suffered severe depression all my life) was hospitalized (due to a broken hip, surgery, complications) and she refused to sell her home to live in an independent living community, even though my father was exhausted and ready to downsize. The social worker I hired (who was worth every penny I paid her, both for this one session and the many useful Dr. referrals she provided, including a psychiatrist my mother now loves) professionally mediated the family discussion (which was tense; my father was untrusting, and my sibling participated by phone from a different state). I set up the meeting at my father's house and she came to us. Ultimately, everyone agreed they had to sell their house and move to a more suitable living arrangement. Shortly after my mother got out of the hospital/rehab, she saw the psychiatrist who gave her a new prescription and she did much better (though there are still issues that persist, including marital issues between my parents which the psychiatrist occasionally mediates because I stopped discussing this w/them). I plan to re-connect with the social worker in hopes she can see me for my own therapy, which I need.
Perhaps if you find such a social worker consultant and schedule the meeting, insist your father attends, there can finally be a healthy/open dialogue about your mother's situation and plan for needed care. Since your father is a mental health professional, he may be resistant at first but I would be as forceful as you can to get him to attend, as an ultimatum, so that he may finally realize the time is now to appropriately address her issues, particularly if another professional is raising this as necessary. He also needs to fully understand that this is having a negative impact on your health and well being as well as face the fact that a time may come when neither he nor you are around or able to care give on a daily basis.
About guilt - something helpful I read is that it is much better to feel guilty than resentful. Of course you love your mother and want to help her any way you can, but you can't do this at the expense of your own health/well being. You are not a full time caregiver, nor do you have to be. You have other obligations. This is where establishing firm boundaries/limits, by making clear to both of your parents what you can/can't do/when. This is hard but I often say to my parents: "I can do X but I'm not available or able to help with Y." I screen/limit incoming calls, visits (weekly). The calls from ER are extremely upsetting and turn your whole life upside down as you know. You must pace yourself & practice strong self care, self protection. This includes knowing when to detach (with love, there are many good articles on this out there). This year my parents had many stays in the hospital. During each crisis, I did as much as I could (w/a full time job & my own family), took off work, going during lunch/after work, calling nurses in the evening/morning to check on status, paying their bills, etc. However, after things stabilized, I realized I had to turn off my phone at night & step away because I was severely burnt out. They wanted me to continue to come every day because it was a reflex to ask me, they had more things they wanted me to do, but I had to be firm and they have help. I feel healthier now even with the guilt.
Good Luck and God Bless
Now at 92 she still speaks clearly but makes little sense - she has picked up a habit of saying 'amen' all the time - the louder & more frequent then that's when she is in pain but also just off out of the blue [I think that's better than swearing]
My dad was a dr & in complete denial of her mental decline - I have found that most literature is based on Altzimers & that she had a different path - her injury was to the front right side & if your mom had a scan the drs could tell you where & possibly how it would progress
If she got that injury at work then she should be able to get help from her employer's insurance but if it was away from work then that may not be covered
Don't feel guilty for anything it is just life's bad luck - yes take time for yourself & don't feel guilty about it - we are supposed to honour our parents not sacrifice our lives for them - how did your mom deal with her own parents & in-laws? - above all try to keep your sense of humour
The “blinders” Dad is wearing have to come off and you’re going to tell him they have to come off or you’re cutting your involvement at least in half. Mom needs to see a neurologist if she hasn’t been in a while. She may even need behavioral therapy. If her issues are serious enough, she may even need to be somewhere.
She is holding you hostage with the myriads of calls, texts, unannounced visits, tears, etc. and Dad is letting her by ignoring the situation AND your own needs. He’s putting his own comfort over your’s. At some point, your husband is going to say “Enough!” And you won’t be able to blame him. Change your locks if you have to. Your house is your home and mom shouldn’t have free access to it. If she shows up at the door, tell her it isn’t a good time.
But do get her help. There’s probably many things about her behavior she can’t help and you need to know what they are so you can react accordingly.