Stress, caregiving, and lack of support. Any ideas on how to cope?
Relating to Caregivers I have read so much about stress and am not seeing many ways to deal with it yet so I have many questions. Here's my situation. I have had anxiety disorder from my childhood on. I am taking care of my Dad (possible dementia and Magor Depressive Disorder) as well as my HF ASD Son who has OCD components and Anxiety. My physical health is not good. I have a rare cuvature in my spine, multiple herniation's, protrusions, that cause pain in my neck, back, and head. I needed my Father's assistance while I underwent intensive treatments for my spine. I did not want to put my Son at risk. I noticed my Dad having issues. IT took me nearly a year to get him somewhat appropriate treatment. His personality changed, he refuses to do daily tasks and at this point is creating more stress that physical help.
My Dad has called me names, belittled me, etc. I am VERY good with finances and he admitted he cannot handle them. HE owes over $5,000 alone on his Electric Bill from his own home. He wanted me to take it over. I have asked him to do small tasks, he first said he forgot. We then decided to have him write them down. He still claims to forget. I advised him to use separate notebooks for various things (finances, chores, etc.). He refused. In the past several months he has not made payment arrangements on specific bills that are behind, he let's them go accruing fees (I gave him numbers and had him write down what he had to do). I am keeping up with the current bills.
Do to the above he has created a plethora of financial stressors. There are thing cannot handle. I also think he is capable of making certain phone calls however he refuses. In the midst of these issues (usually at night) he can get angry, yell, and create chaos in my home. When he get's angry he is supposed to separate himself. He refuses at times. I have asked why he does not do a task on the list he says he does not know and will refuse to act when I remind him most of the time. There is more but I could write a book on his actions. The point is he creates a lot of issues, most of which are unnecessary.
To limit my stress I ignore some of his behaviors, some of the finances he has to handle that I cannot as usually it creates arguments. I cannot ignore everything. I am reliant on some of his help financially as well.
I have now gotten sicker. I was diagnosed with a stomach motility disorder casuign severe constipation on top of the pre-existing conditions. There are days I have to sue the bathroom for 6 hours on and off and cannot leave the home. My anxiety has gotten higher.
I contacted my case manager and advised her of my anxiety. She offered no advice. She feels my Father is not sick and is manipulating me. She feels he is miserable and is trying to make everyone else miserable. (that was the jist of ehr advice) I contacted my Psychiatrist who is new as my old one left the practice..The new one made a small med adjustment and advised me to try a partial program to ease the anxiety. It sounded good however it runs 6 hours a day and the intake counselor advised me I am not suitable due to my physical limitations.
I was advised my another agency to get a second opinion by another Psychiatrist. When I called on that today and was informed my case must be closed at the other office. It is looking like I cannot get a second opinion due to my insurance.
I do not want ideally to have to be on more medication. If however that is needed to keep my anxiety down I will go that route for now. It seems to be the necessary evil. I have a therapist appointment pending. Has anyone had their anxiety level this high and what have they done about it? I have NEVER been this ill in my life with it.
I am aware I should limit my stress for the time being. How to I do this without beign able to leave the house very often? I cannot change my Father's actions. Whatever is going on with him (he refuses to follow Dr's advise) I cannot fix.
I have been dealing with all of this for quite sometime and am afraid I am at burnout. Is that a possibility? If so what can be done about that? I am not comfortable putting this all here however, I feel left in the dark with my treatment. I also feel as honest as I have been, I am being told to "suck it up." I do nto understand why the new psychiatrist would recommend a non-viable option. She also made a comment about me being in the situation I was in as if I can just get out of it. I think that needs to be addressed with a skilled therapist after I get my symptoms under control.
Who here has done what to cope when the anxiety get's this high? Ideas would be great.
https://www.agingcare.com/articles/how-to-unplug-from-caregiving-163043.htm?utm_source=Newsletter&utm_medium=Email&utm_campaign=Newsletter%20-%20November%2012,%202014
I spent 3 1/2 years taking care of my dad who suffered from dementia. Much of what you are describing are behaviors similar to those my dad exhibited and I know how frustrating it can be to cope with someone who seems to not be cooperating. I learned a great deal from a dementia expert named Teepa Snow. She has a number of videos posted on YouTube, including one called "Making Visits Valuable" which is a live presentation she gave to a group of family caregivers in Florida. It's broken into segments of 10-15 minutes each so it's easy to find the time to watch. I recommend this to you because in it, she describes why many of the behaviors your father is exhibiting are occurring. If, indeed, he does have dementia, as she says, it's important to understand that it's not simply memory loss, it's due to brain failure. His behavior is not purposeful-- when he says he doesn't know or "forgot" it could be that his brain is just no longer able to hang on to information. Here's a link to the first video in the series--I think you'll find it very helpful in understanding what is happening with his mind that is causing his behavior changes, and some practical ways to respond that will make your life easier (and reduce your stress).
I would also suggest, if he is open to having you take over managing his finances, that you have him prepare a power of attorney authorizing you to act in his behalf. I know that may add additional tasks for you, but if he is not handling his affairs the way he should, that will continue to add stress to your life as well as his. With the POA, you will be able to make arrangements needed to pay his debts. Depending on the financial institution, they may require additional paperwork from you, but in most states, the legal POA document should allow you to take care of that on his behalf. It's important to take this step while he still has the mental capacity to sign the documents.
With my dad, he went back and forth on allowing me to do things like that for him, even when he willingly and knowingly assigned the POA to me. I found that if I explained what needed to be done and asked him what he wanted, he often would tell me to do what I thought was best. By asking him and allowing him the control, instead of just handling things for him, he went from difficult to appreciative--that was a huge lesson for me!
Finally, with regard to handling stress, sometimes you just need to remove yourself from the situation for a short time, take some deep breaths, meditate, listen to soothing music, read a book, take a walk--anything that takes your mind away so it can release what is causing stress in that moment.
I don't know if it's appropriate to post this here (so forgive me if it's not). I have a Facebook page for caregivers--the Family Caregiver Resource Center--where I post tips and articles each day on different aspects of caregiving. Feel free to take a look at it and see if anything on there helps with your situation. https://business.facebook.com/FamilyCaregiverResourceCenter?business_id=418453501625751
Best of luck to you. The time I spent with my dad had many challenges, but I have no regrets. Taking care of him (and my mom) was the most rewarding and soul-satisfying thing I have ever done.
1) Learn about the disease. I cannot stress enough how understanding dementia saved my own sanity. (Oh, I had some crazy days, too, but in the overall picture I stayed grounded.) Do not expect more from someone with dementia than they can produce. There is actual physical damage to the brain. Until I understood and accepted that I was frustrated. Stop thinking about whether Dad might be manipulating you. Stop expecting him to write notes in color-coordinated notebooks. Stop expecting him to help get meals for your son or even for himself. Believe the evidence of your own eyes. He isn't doing what you want him to do, and HE CAN'T. Without fully embracing this notion I think you are setting yourself up for frustration and stress.
2) Talk regularly to people who "get" your situation. There was no support group here for caregivers of people with my husband's kind of disease until about year 3 of our journey. Joining that new group made a HUGE difference in my stress levels. This and other discussion forums are valuable, too.
3) Carve out some "me" time. Get away, alone or with your son, for short breaks. Looking back I don't think I did this enough, but when I did it was very helpful.
4) Deal with each new symptom, each new stress, as it comes up, as well as you can. When my husband's loud television drove me nuts, I got wireless headphones for him. When my mother woke up several times a night to ask me what time it was I got a clock that projected the time on the ceiling. I think that you are trying to do this with your lists and your rules. You are on the right track, but your solutions have to take into account Dad's dementia.
5) Give yourself permission to mourn the losses in your life. As Dad gets farther and farther from the helpful generous person he used to be, that is a genuine loss not only for him, but for you. Don't dwell on the losses to your own detriment, but do acknowledge them. Pretending they aren't happening or that you don't care only increases tension.
6) Many people report that journalling helps them cope. I found keeping a Caring Bridge blog very useful.
There are many others here who deal with the same issues. Getting out may be a viable option in the future, and it may be a good plan. In the meantime I want to hear how others are coping.
I am sure there are worse situations than mine. I have read about them. Many caregivers deal with a lot more than I am. They are functioning through it. My question was how? It was meant not only for me but for many others who are downright miserable in the situation and may be doing it for only the morals.
When I posted the question I wanted coping strategies. I wanted as well to help others here who may read but not feel comfortable sharing. I am not seeing as of yet (and i am still new here) a lot of basic, skill building, stress reducing answers.
I appreciate the responses; however it may close down some people into not posting and asking questions. We all have different mind sets and morals.
You counted on Dad for physical help. He is no longer able to provide that for you. You want financial help from him, but that is in jeopardy because of his inability to manage his finances and his evolving needs that will require all his resources for himself.
The psychiatrist is right. You CAN get out of this situation. It will take effort to detach from your father's care in a way that will be safe for him. It will take effort to find suitable housing and medical therapy for you. You deserve help with this effort. Instead of asking your support network "how can I cope with the heat?" ask "can you help me figure out how to get out of the furnace?"
It is okay to disconnect from dad while you concentrate on managing and improving your own health. And you can tell dad so. Provide him with aging services local contact number and let him find any assistance he needs.
Good luck.