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LGBT Community and Allies
Newbie - HIV+ Caregiver
To be frank, having seen some of the initial dust up over an LGBT board, I'm relieved to see it here. idk if I can keep my intro short.
Mom's in her late 80s, living alone (her preference), somewhat mobile (limited driving) and, thank goodness, active in her church. In LGBT-speak, fortunately it's an "affirming" mainline church with a gay pastor. (However, I am not Christian). Over the past several months, Mom's forgetfulness and confusion have increase substantially, to the point I've had to assume control over some of her finances lest, for example, she open a new checking account and start writing bad checks. That was a trip to the bank, Mom quietly crying in the corner while I tried to straighten it out. Yes, I have Power of Attorney, but am reluctant to exercise it yet.
She has a long history of untreated mental illness for which she's steadfastly refused to see help, ostensibly because her generation considers it "shameful." If I had to describe her in one word, it would be victim. I was adopted and only met her 30 years ago, but it was evident from the get go. For a time, quite literally every other sentence was punctuated with, "I'm soooorry." For a retired nurse with a Master's, she nevertheless has few social skills nor - per friends who've known her longer - has she ever been able to pick up on social cues. This may sound awful to some ears, but my patience with her has already been tested.
The only family left with which there is any contact is a judgmental, moralizing, hyper-religious cousin out-of-state with whom I've gone head-to-head a few times. Case in point, I had to verbally excoriate this person to get Mom out of the path of a hurricane last year that left us without power for a week. (This person then spent the week sending texts complaining she didn't like my attitude).
Compounding this is my own struggle with HIV/AIDS for 25 years, the past five being the worst as my own health has declined due to HIV-related inflammation...a heart attack, COPD, and emergency gall bladder removal. My numbers are steady but, despite medication, low. I'm on Ryan White assistance, but the agencies are not particularly good or professional sources of help. I often know more about my illness and treatments than they do. I do not qualify for SSDI. I still manage occasional gigs as a professional photographer.
With all these stressors, my own sanity is often tested...more than I care to share at the moment. I suppose to some I sound like a real jerk, but I keep my interaction with her to a minimum because I doubt my ability to handle it gracefully. Emotionally, she can suddenly start the tears for reasons she won't disclose and I don't want to exacerbate things. My only relief is that her congregation looks out for her. I am accompanying her to her doctor's appointment in June - doc has a reputation for being impatient - to discuss some kind of treatment for her.
Welcome to our world, Mark in the Dark.
Wow. Thanks for blowing me off to an 800 number. And so understanding! That's really helpful when someone's already under stress.
And thank you for illustrating so perfectly how LGBT caregivers are marginalized.
Hello Mark and a very warm welcome to you. Being on a journey with a Loved One (LO) with dementia is not an easy journey as you well state; you have found a place where your challenges with your mother will be completely understood. Sorry this will be a long Post, but there is much to share. Just hope I do not put you to sleep in the midst of it.
I am very sorry to hear about your own health challenges, as well as the financial challenges; that really ramps things up with your mother as you also must take good care of yourself too; it is an awful lot on your plate. My beloved brother was one of those in the earliest days of Aids, before we had the treatments now available, and we lost him; how I wish that today's medical advances in treatment had been available then, but the reality is that it was not. Yet; with today's life-saving meds, they do not come without side effects, so that is understood. You are rising to the top with multiple situations and are doing the best you can with the challenges at hand.
Please do know you are not being marginalized; Mimi is one of the Peer Volunteers here who is highly thought of by the Members, she has dementia and has been ill herself, but she did want to greet you and get you to a place of assistance for an in-person chat; but more about that later.
While this is indeed a Forum for those who prefer to be in a setting for LGBT folks, this is also a Forum that is not well traveled, that is the reality, so there is very little concrete input. Here, on the Message Board, the best attended Forum for those with Caregiving issues, is the Caregiver's Forum; there is where you will find SO much experiential wisdom and input and that is what you seem to be asking about; those difficult caregiving issues.
We Members can Post on absolutely any Forum we wish. What I would really like to share is that LGBT Members do indeed openly Post on other Forums and all have been welcomed with open arms, no kerfuffles or judgment ever seen.
Anyway; your mother. Does she have a dementia specialist? If so, that is good. If not, she absolutely needs one. The best approach is to have a good Neurologist who sees dementia patients as a routine part of his/her practice. They are best at diagnosing just what type of dementia is present. That is crucial as there are multiple different types of dementia of which Alzheimer's is only one. Some meds to treat one kind of dementia can be contraindicated in another and make things even worse.
There is also the option of seeing a Geriatric Psychiatrist. This may give some of what appears to be much needed assistance since your mother has a dual diagnosis of both dementia and mental health issues. Our primary care MDs are wonderful at so many things, but they are not on the cutting edge of dementia and that makes a huge difference in so many ways.
Okay; getting her there. One of the best tools in the Caregiver's Toolbox, is that of the, "therapeutic fib." These fiblets are used as necessary when challenges or upsets need addressing. This is not a moral lapse, but a kindness to our LO to get them to care and/or to keep them from meltdowns. No need to stand on insistence with your mother, that is likely not to have good results. I even elicited the help of the office staff at my mother's doctor. I had them call and tell her that since she had not been seen in so long, doctor could no longer prescribe her blood pressure med until she had been seen in appointment . . . AND . . . they just happened to have a few openings on such and such a day; would she like an appointment? She did, because she valued her blood pressure pills. Whew!
Sometimes it was a different fiblet; we pretend the appointment is for us and we take our LO with us because we are going out to eat afterward, etc. Fiblets are acceptable helpers.
One thing that needs doing if and when you get her to the doctor, is to provide either a confidential written memo or call or consultative appointment with the doctor alone prior to your mother's appointment; this is to provide a detailed outline of all changes in cognition, function and behaviors so the physician can make an accurate assessement as well as better prescribing. I used to fax said detailed memos to the doctor's office two working days prior to all appointments; let staff know it was coming and time sensitive to the appointment and then follow up to ensure it is in the doctor's hands. If I had tried to talk about my LO in front of her, it would have caused an intergalactic war of epic proportions. NOTE: You should always be present at all of her appointments as she will be a poor historian, may fog her condition and also, because she will not recall or interpret her doctor's instructions/input accurately.
It is worth mentioning that when our LOs behaviors ramp up, it may well be secondary to a "silent' urinary tract infection. These UTIs do not have physical complaints from our LO, but they sure do cause significant changes in behaviors and function.
Mark, as sad as it sounds and as much as it will make a difference in transportation, your mother should not be driving any longer; it is far, far too much a risk not only for her but for other people on the road. Also, if she is the cause of an accident which is certainly a risk in her present state and in the future, legal issues could be a huge negative; this is a very litigious society we live in and you would not want to get caught up in that as well as the drain on her finances.
Do you think your mother would benefit from Adult Daycare for a few days or more a week? One does have to screen them as one is not the same as the other, but there are some awesome ones out there and some of our LOs have actually thrived with the socialization and activities available at the better settings.
If she has funds, would she benefit from a companion in her home during the daytime? We hired a lovely lady from the church; did not tell Mom she was hired, but presented her as a friend. We had coffee and cake a couple of times with the "friend" grooming Mom. Then the woman called Mom as her new friend and then began "visiting." Mom loved her and it sure did help. More necessary fiblets.
As far as Finances; I too had DPOA for my LO; but I did all banking and finances without making a formal application of the DPOA. I also did much oversight of accounts online pretty much each day. I had my name on all checking and savings accounts which was SO helpful both while my LO was still with us and especially when finalizing everything after death. I had the Social Security check going into the same account as to change it would have been a nightmare; but as soon as it hit the account, I transferred the deposit into the bill-paying checkbook.
I kept the original checkbook for bills and kept that checkbook from my LOs use, and opened another in which there was only $400 max in it at a time with no overdraft protection which I gave to my LO; I watched this one online like a hawk. Soon, it was never used. No credit cards in her wallet. I kept one and used it for her meds. Also, I did an inquiry at all three credit bureaus and found no less than sixteen open accounts which I had to close.
It is also true that I found it best to leave noxious relatives out of the loop. No need for contact except in the most superficial way if they bothered to make contact which was not often. No need to give "updates" on LOs condition; I found that by doing this, it only caused unwanted input and judgment and who needs that . . . certainly not the primary caregiver who is doing their level best. I also had to let go of my LOs behaviors which had been issues time and again even prior to the dementia.
Learning to let go was the most difficult lesson I had to learn, but when I did, it was actually quite liberating.
It is wonderful that your mother has a community of friends in her church; that is a plus. It is very difficult with all the emotions, and acting out from our LOs, but I found that it is best to simply learn to let go, and NOT engage. What is helpful is to learn to validate our LOs feelings when they are acting out or verbalizing something that is perhaps even false. By not addressing their words, but addressing the feelings behind the words and then refocusing them, it makes things much easier.
Kind of like, "I am so sorry you are angry and upset, I would be too if someone took my (whatever); I will help to look for that. Hey; let's go and get a cup of coffee and some cookies . . . ." Or whatever suits the moment; you get the idea.
Another source of help is the Alzheimer's Association Helpline at (800) 272-3900. If you call, please ask to speak to a Care Consultant. There is no fee for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They can be wonderful support, sources of information and can help us with our problem solving.
Once again, I am so glad that you have found a place to come to and discuss your challenges with your mother. And once again, I do invite you to try the Caregiver's Forum; most folks get a lot of good input there.
You are a loving son who is doing his best under very difficult circumstances; you mother is blessed to have your care.
I send warm thoughts your way and so hope that this Message Board can be of support to you as you travel this path with your mother. Do let us know how you and your mother are doing, we will be thinking of you and we truly do care.
Thank you for the detailed reply, Jo, an almost overwhelming list. tbh,
I don't apologize easily. But I could have expressed myself without
the sarcasm. I suppose it spoke volumes for my stress and, as you might relate, my own difficulties on the receiving end of stigma STILL associated with HIV.
Yeah, I think that the regular threads are the best way to go.
To specifically address your points: In fact I DID fax a couple pages to Mom's doc a week ago, before driving her to her appointment this morning. (Interestingly, yes, a possible UTI had presented in labs). I think my presence gave the doc more license to be candid about issues. I'll detail elsewhere.
Also, turns out that, no, Mom had NOT been doing her follow ups and apparently wasn't compliant on her BP meds (her systolic up to 170).
Yes, I dread having "The Talk." But I agree with you. I think her church is her resource.
Seems, too, for a variety of reasons, I'll be assuming total control of the finances sooner rather than later.
Mark! Hi! Good to see you and glad the physician was being more candid; that sure can help to have open communication.
It is really true that when one wants to address specific care or behavioral problems regarding our Loved One's (LOs) situation or care, the Caregiver's Forum or Spousal/Partner Forum are where one will get most experiential input and suggestions and we sure need that on this journey.
For me, the journey with my LOs dementias was two steps forward, three back and two forward again; rinse, repeat. The one thing is; these most difficult phases of the disease do pass. Truly, but it does take a bit of time.
So hope that you are doing well and hope to also see you on the other Forums from time to time. Sometimes it is just good to log in and talk to others and get some venting done. We have all done that and it is at least a place where everyone sure does understand.
Take good care,
Hi Carolyn, just thought I'd let you know that Mark has most recently been active on the Caregiver's Forum; you can find him there on his own Threads by scrolling down the grid until his name pops up.
MarkintheDark has been working very hard at getting plans into place to cover various contingencies, so any ideas or information would be helpful.