Lately I have been coming up against things I thought I needed help working through, so I finally made an appointment with a counselor. This one was one of the names I got from the Alzheimer’s Association. I came home more depressed than before I went.
The counselor had absolutely no idea of caregiver issues, and even less inclination to educate herself about them. She dismissed the stress of being a caregiver with the statement, “Yes, but you made the decision to do that.” Gee, I guess that makes it all easy, because I decided to try to care for my husband. She actually thought that I was the only caregiver to feel stress, that I just had emotional problems which were the cause of my stress.
She was horrified by the idea of getting to the point of discontinuing medications or not treating pneumonia. These are some of the decisions I had hoped to be able to talk through, but I certainly do not want to talk them over with someone who would be judging me and actively disapproving of making these agonizing decisions.
I think I’m feeling caregiver fatigue. I’m really tired of trying to educate people about this: the doctors who refused to take the symptoms seriously because my husband was “too young” to have dementia (I wish that were true!), the psychiatrists who said that my DH was just depressed, even thought the antidepressants made no difference in his symptoms—and testing showed “unexplained memory problems”, the family members who have no idea of what we are dealing with. I didn’t want to have to educate one more person who was supposed to (and who was being paid to) help me.
Wow. It wasn’t until I wrote that—until the words came out of my fingers—that I realized that it’s not really the “caregiving” that’s wearing me down. It’s having to struggle to get a diagnosis, having to struggle to get information from doctors, having to struggle to educate his family and my family, and having to struggle to deal with all the legal, financial, social security, medical and insurance problems. The actual caring for my husband is the easy part of this.
Is there some booklet out there like “What caregivers wish people knew about dementia”? I’d like to pass out a few copies. There are a lot of books for caregivers (a large number of which I have read), but I think most caregivers are doing a very good job of educating themselves about this disease. It’s the rest of the population that needs a book about it. And, unfortunately, that seems to include many members of the medical profession.
Does anybody else feel like this? (And thank you for reading this. It’s such a relief to “talk” to people who really do understand caregiving.)
Jan, these are the times we hoped someone had a notion of what to do to offer advice about caregiving. i am appaulled that a counselor would even comment their own opinion on anything you had to ask about-the purpose is to listen and be nonjudgmental to get the max listening power to those who are asking. i have been the route to early in diagnosis i went to a psychologist due to stress and exactly what you are feeling. this person tried to offer advice and help from what he knew my own convictions were and listened and was not offering comments of his own personal convictions. this is what they are supposed to do. plus i have had 9yrs+ of personal psychotherapy both individual and in groups and this is also how most dr approach the issues is to listen and help you with your issues. i think you should try a psychologist or psycoanalyst and not a counselor. they will be keen to listen and ask pertinent questions and let you ultimately make the decisions. its so hard i can just imagine trying to get someone to listen about EOAD or diagnose someone so young. the medical community has a long way to go on this one. as AD ravages more of the young and early seniors in coming yrs more knowledge is bound to come forward and offer help to people like yourself. you can always find a sympathetic ear here with us who know exactly how you feel. hugs, divvi
You said exactly how I feel...not tired of my husband; it isn't his fault...I am tired of the alleged professionals who frequently aren't as well read as I am. I am rather shocked that the Alzheimer's Association would recommend someone who is obviously not well versed in our issues, much less someone who is obviously so unprofessional as to judge you in that way. You may want to consider letting the Alz. Association know of your experience. It is very hard to find a good therapist. When we were first starting the diagnosis quest, my husband saw a treatment team of a memory specialist, social worker/counselor, psychologist and psychiatrist. Of all of them I really liked this particular psychologist. I have never forgotten about her. I have my first appointment for myself with her this Friday. As helpful as this support group is, I realized I need more...at least right now. Sometimes reading about everyones experiences makes my head spin and I seriously question myself and my ability to handle our future. All of the responsibility and what our future holds scares me.
Jan, you absolutely should tell the Alz Assoc what happened, IMHO. Just imagine someone else going to see her, and being treated the way you were, if you don't. Maybe you wouldn't have been referred to her if someone else had complained.
Stephanie, I'm sorry you're having such a bad time, but it's sooooooooo good that you took steps to find someone who can help.
Jan, my neurologist had a series of small booklets from the people who put out Nemanda that is exactly what you are asking for. Free materials to just hand out to people. I went to their web site, and the booklets are not there.
I went to a therapist and had a lot better luck than you did. She wasn't a caregiving specialist or a dementia specialist, but she knew enough about both not to do the things you experienced. Tell the Alzheimer's Association that she isn't qualified and why. There is no excuse.
Jan, I'm sorry too that you got such a "dud" of a therapist. I see someone who is really good and very supportive...
I know what you mean about all of the other "professionals", sometimes they just don't know that much. It's like we are boxers continuously taking punches by people that are supposed to be on our side.
That being said...there are some good people out there, don't give up.
jan, you should really think about letting the ad association know about this very unqualified counselor. this is just an outrage for you to have had to go through that when you needed help.it is obvious she does not know what she is talking about. i know what you mean about trying to take care of everything and educate the family on eoad. my dh is 52 and has eoad. he is in stage 6. his family gets things so mixed up,they are telling people he has 18 months to live,and i have to deal with other concerned family members and friends asking if this is true and if he has been to the dr lately. we went to memory center in aug. and ad dr. said he felt like my dh would have around 12 months until total dependence. he is alot worse than that now and i expect it to be sooner. it is all so overwhelming all of it. some people can't and won't get the facts straight no matter what,i just give up on some of them. i am trying to take care of some legal matters,worried about fianances,trying to find out what our insurance will cover and i can't get any straight answers. i am so stressed out,as i know all of you are. i don't even get on this sight that much any more. i have no free time,i take that back,when i do have free time,i'm too tired. as you can tell,i am upset and stressed and scared and oh,so sad. jav
Jan K, Jav and all the others who are in the later stages of caregiving, my heart really goes out to you. I can feel your pain and frustration just reading your posts. My DH is not that far along yet and I already have days when I'm stressed to the limit. Seems the only people, professional or otherwise, who really understand and know what we're going through are the wonderful people here at Joan's place. Keep coming here and posting. All of us really care and we're a lot less expensive than a counselor.
jav - We know how confusing this illness is and since others are not involved it must be pretty confusing to them too. On this forum there are dozens of different behaviors, questions. My children, while accepting and understanding of their father, still do not try to educate themselves about the disease. With all the reading, posting and researching the disease, insurances. assistance we do, one would think they would take more interest.
I know if one of them were in a similar situation I would be searching the Internet, etc. to try and find out information that might help them. It seems from your all posts this is the normal behaivor.
That would make a good topic for a research paper. Take care of yourself and try to post as often as you can because I think it helps us to have someone to talk to and I prefer this to a counseler. I am tired all the time too. This disease just robs us of ambition and energy.