My 68 year old mother is living with Parkinson and mental illness. We have been struggling for years with the medications, and wondering how much of the medications are impacting her mental state. In the last 2 years everyone in my family that has been taking care of her seems to have aged 20 years themselves. I have been trying to convince my 72 year old father that we need help because as the primary caregiver I fear that he is fading faster than the rest of us. They spend most of their time in Peoria, IL and a few months when things are going well enough to make the road trip to where I live near Steamboat Springs, CO.
They just made it back to Peoria, but not before she be came very delusional and full of anxiety making it to the emergency room on almost a daily basis. Even though they are not physically here in Steamboat I expend just as much mental energy thinking about the situation as if they were here. I am 39 and I haven’t been able to hold down a steady job for several years as this situation has become all consuming for my Dad, brother and myself. I think we are on track at times when I get additional care set up and then there is no follow through on my dad’s part. I know most of this is his exhaustion level and a great feeling of guilt.
She has spent several months in the hospital in Peoria and it seemed as though we were caught in the vicious circle. Certain wards wouldn’t take her because of the mental issues, others would decline her because of the Parkinsons and nursing homes turned us down left and right. Her case can’t be such a rarity that we can’t find the help we need but it seems to be the case. I did make an appointment at Mayo over the summer and meds were adjusted enough that we had several good months. However, when ever she seems to get stressed we all pay the price. Days with out sleep, complete paranoia that we are trying to harm her, calling people on her cell phone at all hours insisting she needs help. I see how exhausted we all get and how frustrated we get with her and most of the time she is very unaware of her sometimes dangerous actions.
Thank you for having this website.
Kim
Kim, I am all too painfully aware of how caregiving can wreak havoc on your mental and physical health. But please, listen to these wise and caring women! Their advice comes from experience and also from a place in their hearts that knows what you are going through. Don’t be afraid to ask for help! You have found a safe place to come and know you are not alone. I wish you luck and peace and love on your caregiving journey. Cindy
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Dear Kim, I understand completely what you are going through and it is very difficult to tread through these tumultuous waters you’re all in right now. I’ve been through the same situation with my mother and her dementia with her living in a different state than I and seeing my father begin to fail in his health even faster than she probably due to the depression that set in knowing that his wife was no longer going to be the strong one anymore like as before. The first thing I knew I had to do was hire a competent caregiver to go over every day and spend the day with them helping them with everyday living. We found an excellent lady and it took a lot of stress off everyone. Shirley would be a companion to my mom playing her favorite game with her; would take her to church; do the shopping; take them to their doctors appointments; give my dad aid with his skin and nails; make sure they got their meds; joke with them; hug them; sit with them. They became very dependent on her and really looked forward to seeing her everyday. They would have her coffee ready for her when she came over in the morning, is that sweet or what! She worked 4 hours to start off with in the beginning and then it was 6 hours. Shirley had to leave eventually and move out of state to help her daughter with her newborn grandchild, but we considered her a true blessing while we had her and she really cared for my parents. We hired other caregivers after she left and eventually after my father passed a caregiver agency fulltime, 24 hours. They were comfortable in their own familiar surroundings so that was my goal at the time to keep them at home as long as possible and not strip them of all their dignities by forcing them into a nursing home which they would have fought tooth and nail back then anyways. I eventually moved my mom to my home state and took care of her myself in my home while I figured everything else out and you’re right nursing homes and assited livings can be very difficult getting them to accept patients who have behaviors as you’ve all ready encountered it sounds like. There appears to be some type of legislation needed against the prevalence of that going on. Perhaps you can contact a county social worker to help get involved to work on behalf of your dear parents to help guide them and they should even make the phone calls as well to the various facilities to find placement if that’s what you all decide may be best for everyone. My experience is that some facilities work more cooperatively when government employees are involved. If you sign her up with a Hospice, she will automatically be assigned a social worker who will communicate on a weekly basis with the family. Do you have their affairs in order? Do you have yourself or someone in the family designated as POA or medical POA, things like that to make sure of, so they can speak freely with you which they will as long as they know who they can legally speak with. It’s important that those documents get executed while they’re still competent as you would have to go through the more difficult route after that through the court system of getting them declared legally incompetent and having yourself or whoever wants to be in charge of them assigned by the system as their guardians. Maybe your dad would also be open to the idea of them both going into an assisted living together where he would have the help there 24/7 for his wife and he could relax and enjoy himself with all the ameneties that would be provided there. Reading your story my heart breaks for all of you. Your father is witnessing the love of his life being terrorized by these awful mean disease processes. You are distraught being so far away and are always under stress regarding your dear parents welfare. Your parents need helping hands to aid them and comfort them and assure them they’re going to be all right and that they are not in this all by themselves. There is light at the end of the tunnel Kim. I know first hand how trying to help them long distance can be not only draining but all-consuming and you begin to feel like it’s totally impacting your own life and therefore you’re not able to focus on your own self as much as you should be anymore. That’s only because these are new and scary circumstances you’re all in right now. There’s help for your parents out there and you all will figure out the right paths to take. Please keep us posted Kim and we’re here for you always to lend an ear and help any way we can. Sending big virtual hugs out to you and your sweet parents in Peoria.
My best, Karen
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Kim, such excellent advice from Karen, someone who has been through a very similar situation, and from Lynn, a professional caregiver. The rest of us offer our hearts in support of you during this trying time for you and your family. Jean
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Hi Kim, I am so touched by your story. I have been thinking about you ever since I read it. You are in a warm, compassionate environment here at DLH. Keep on writing. It really resonates with me not being able to work because we care so much that it hurts sometimes. I have some time on my hands and I do go to job interviews every couple of weeks but I don’t ever feel like emotionally I will be able to handle a job unless it is part time. It’s scary for me because I feel compelled to tell the interviewer my story because it’s a big, big part of who I am. When the time is right, it will be time to work. Kim, I wish so much for you a place that is quiet if even for a moment.It is all going to be okay. Remember to breathe. I care and I am thinking of you. Melisa
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Hi Kim;
Sounds like your entire family has been such troopers working with your Mom! I am an LCSW and I focus on dual-diagnosis mental illness. I might be able to offer some suggestions if I have a little more information. If you are interested and comfortable sharing, you may either post it or email me at Lynn@dontloseheart.org. What is your Mom’s original psychiatric diagnosis, her age she started having symptoms (delusion, paranoia), when and who diagnosed the Parkinson’s, and what type of physician or psychiatrist is she seeing? There are Psychiatrists who specialize in geriatric psychiatry; I am SURE you could find one in Chicago.
It must be frustrating to have additional support arranged, and then have your Father not follow-up. I bet you are correct; he feels guilty. Yet, until he is ready to accept help, I hope you will conserve your energy. At some point, he will be so exhausted he will reach out to you and other family members; it will be important you are emotionally and physically ready:) I would suggest calling your Mom’s physician, finding out if they have a social worker on staff, and tell her (Or the Nurse as a last resort) your concerns about your Father. Your Father’s generation looks to the Doctor as the ‘authority’ figure; maybe he/she and the staff could nudge him along a little. Just a suggestion!
Good luck and we are here to support you!
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Dear Kim,
Welcome, I am sorry for all you are going through, it is hard enough being a caregiver at times, but with obstacles in the way, it makes the journey so much harder. You seem to have many concerns, first and foremost try your best to take care of you and your stress, as without you nothing will progress. And then it sounds like your Dad may need some help too just dealing with the situation, facing it, and then following up with the care that your Mom needs. Maybe it is too hard for him to admit to himself that the situation is really that bad.
I am wondering if you have enlisted outside help for them in their home, or are you thinking that the best situation would be placement in a good facility?
My thoughts are with you, and it really doesn’t matter how many miles there are between you and your parents, your heart, mind and soul are with them, at all times.
I think you are doing a tremendous job, things just need to be tweaked alittle, so all involved will be able to exhale. We are here for you, and so glad you found DLH.
~Char
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