polymyositis

Trust Lost

Posted on by Jinx

Depression has been weighing on me heavily lately in the form of poor motivation, quick to anger, easily irritated and unable to let go of this feeling of worthlessness.

My father is back in the hospital with an infection. Due to the severity of his condition he has to undergo 3 weeks of antibiotic treatment that is administered through the dialysis port. Other than being stuck at the hospital he seems to be doing ok and he does not appear weakened by this recent episode.

During this time I’ve discussed my concerns with his living environment. The house he and his girlfriend live in is a big two story with steps leading to almost every room in the house. They have created various methods to help him maneuver the steps e.g. a strategically place table for him to lean on, but as his body weakens I hate that he has to rely on arm strength that is also fading. His girlfriend has been adamant that she loves that house and doesn’t want to leave it. She constantly tells me that my dad is stronger than he is. I said if that were the case they shouldn’t need to call my boyfriend to help my dad get to the car. She said my dad was just being a “chicken” and he could walk down the required step if he just got over his fear of falling.

Rather than inappropriately rip her head off like I so desperately wanted to, I talked with my father alone and expressed my concerns. I told him that he shouldn’t have to have any fears when walking around his own home. There should be no dangers or obstacles around him as clearly his life is obstacle enough. Surprisingly he agreed with me. He agreed to talk with his GF and even contemplated moving into an assisted living by himself if necessary.

The next day he said that his GF relented since “he” wanted to move and she would start looking for a one story home to rent. She does not want to sell their current home. She is a bit of a hoarder and wants to keep all of her crap somewhere. Fine, great, she can do what she wants just as long as he is safe. I asked what they wanted to do with the house while they were not living in it. He said they were going to do nothing; they don’t have the time or energy to think about that. I suggested they rent it to me and my BF. My father responded, “We don’t want to rent it out because we don’t know what condition it will be kept in.” I stated, “I’m not talking about renting to strangers, I’m talking about my BF and I.” He said, “I know, I don’t know what kind of a house keeper you are. I don’t know what kind of condition you would leave it in.”

Those statements floored me. At that point I told him I had to leave. Too many things went through my head that I couldn’t even see strait. Honestly, I couldn’t care less if they rented it to us. I thought it would be a way for them to get some extra income and ensure their house was cared for. Instead my own father saw me as a liability. The hurt and humiliation was excruciating.

Once I got over the initial shock I called him and explained why I had left so abruptly.  I wanted him to understand I did NOT expect them to rent to us just because I’m his daughter and that is not why I was so upset.  I posed this question to him, “What have I done in life that has shown I’m unworthy of (his) trust?” I’ve never been arrested, on drugs, hell, I never even snuck out of the house as a teenager. In the few years I have been a renter (I had always owned my home) I received my cleaning deposit back when I moved and never had any issues with the landlord. I further expressed how hurtful it was to have my own father think so little of me that I would be so disrespectful of his property.

Then the hurt really flowed. I said, “You expect my BF to help you and your GF every single week, you rely on our help for numerous things around your home ranging from changing batteries to cleaning your pool. You expect me to donate a kidney on your behalf so you don’t have to wait as long on a donor list, and yet I’m not trusted with your home?!”

He apologized and said he regretted his words. I asked if he regretted saying them or regretted feeling them. He tried to explain that since he hasn’t seen where I live in years (due to his limited abilities) he doesn’t know how I live. I told him while that may be true he does know me and my character. I told him it saddened me that while most fathers think the best of their daughters he clearly thinks the worst of me. He continued to apologize.

I would like to say this has been the only hurtful thing my father has ever said to me. I would like to say it is the last. Neither statement is true.  I think it’s because I remind him too much of my mother, who broke his heart when they divorced. I look nothing like her, but our personalities are similar and he often tells me I’m just like her (though I know I’m not).  It doesn’t matter that he is with another woman whom he loves and is happy with. Perhaps I am a reminder of a past he would like to forget. I just don’t know.

I won’t cut him out of my life altogether, but I don’t plan on giving him the time and effort I was. I’m tired of him breaking my heart.

I’m still the child

Posted on by Jinx

Today I am forcing myself to write. I’ve been so overly consumed by my fathers condition that my inspiration and motivation for anything else are lost. The following are the consuming thoughts, the worry and the stress I can’t get rid of.

Now that he is going to begin home dialysis his level of care is going to increase significantly. They are still in the learning process of home dialysis so currently they have to go once a week to a training for the next month. The plan, according to my father and his girlfriend, is once the machine is set up in their room he will be hooked up at night and basically receive the treatment while he sleeps. Sounds easy right? Except this equipment and his body must be kept sterile during this process. This requires numerous steps that includes ensuring all fans and air conditioning is off. If these steps are not adhered to properly he is at risk of infection which could lead to death. Upon hearing this warning my father said to me, “Eh, I could see us being really good for a little while, but like when you tell the dentist you are going to floss everyday, eventually you begin to slack.” Alarmed I said, “This isn’t something you have the luxury of slacking on. Loosing your teeth isn’t going to cause you to die, this could! Why would you opt to do this at home if you know you won’t maintain it properly.” At this point he got irritated at me and snapped, “We will.” Oooook, it would seem I took his little threat about slacking off more seriously than he wanted.

While still in the hospital recovering from having the port implanted (please read about that here) he decides to share that his girlfriend plans to leave for a couple of weeks next month. It’s her mother’s 100th birthday. On a good day he is able to sponge bathe himself and maneuver around his home with the assistance of the stair lift, a walker and strategically placed furniture. This is a man who falls, even when he thinks he is stronger, and ends up in emergency. They live in a two-story home and he refuses to get Life Alert because he can carry his phone. I asked him if he’s going to have an in home nurse come out and stay with him during that time. “I don’t know” he responds. “What do you mean you don’t know? You have good days and bad days, who is going to bathe and feed you when she is gone?” “I don’t feel comfortable with some stranger.” “Dad, do you expect me or (my boyfriend) to come bathe and feed you while she is gone??” At this point I’m freaked. I’m a mental health worker not a medical worker and even if I was, this is my father. Perhaps for some this will seem extremely selfish and wrong, but I cannot bathe my father knowing full well he can afford proper professional care. There are aspects of the father, daughter relationship that I don’t want to lose with him, and if he tries to put me in the roll of care provider e.g. nurse, I cannot do it.

At this point he said he will ask his sister to help him. They talk on the phone often and he feels close enough to her to ask. She has not seen him in years. I’m hoping she comes out and sees what I see. That she recognizes a man in denial about the severity of his condition and tells him he needs to get a higher level of care. And perhaps sell the big ass house and move to a one story. If she feels comfortable playing nurse then good for her, but in my mind that is not a fair request of him either. She is not a medical professional and even if she were she is family.

I know that some people believe that it is the family’s “job” to take care of each other in these types of situations. I’ve had many clients give up careers to care for ailing family members and I’ve seen the hell their lives became as a result. The depression, guilt, the loss of the relationship, e.g. child to parent, the resentment, and anger that develops is heart breaking. I will not let this happen with my father. With my depression, I know that no matter how much I love him, I would resent and hate my life more than I already do. So I will continue to remind him of one of the first things he told me when he found out he had Polymyositis, “I will never have false pride and become a burden to you. I will ensure I have proper care when things get worse.” Things are worse dad…

A weekend at the hospital

Posted on by Jinx

Last week my father underwent a procedure to implant a port into his abdomen. This port will allow him to begin dialysis treatment at home. I took time off work to be at the hospital because even though he claimed it wasn’t a big deal, with his already wreaked condition every procedure is a big deal.

According to the surgeon everything was a success, he even finished early. When my dad’s girlfriend and I went back to see him the discharge nurse was praising how well he was doing and as soon as some paperwork was finished we could take him home.

We had a visit from the nurse that will be assisting us with the dialysis training. He gave care instructions and follow up times. We were good to go. Then the discharge nurse lifted my dad’s sheet to begin removing the monitors. We noticed there was blood and so he began making calls. First another nurse came, and then a Physician’s Assistant, we were told to wait in the hall. Then we saw the anesthesiologist and the surgeon go into his room.

I tried to gage what was happening by their expressions and tone. These people were very well trained as I got nothing. The surgeon eventually came out and said that there was some “leakage” but they were getting it under control. We were sent back out to the lobby to wait. An hour later we were escorted back and were told that they had packed him with about 3 inches of thick gauze and a pressure garment that would hold off the bleeding. The nurse said that if any blood is seen to get him to the ER, but not to worry as that was highly unlikely.

Later that evening my dad called and said he needed to get to the ER. My dad now requires a wheelchair as he cannot walk on the incline of their drive way, but his girlfriend cannot maneuver the wheelchair over the threshold to get him to the car. They rely on us or a service agency they have to call at least 48 hours in advance. My dad refused to call 911 because he “felt ok.”  I was already ready for bed but my boyfriend was still dressed so he went to my dad’s and helped him get to the ER. I got dressed and followed soon after.

At the ER we were told they may have to “go back in” as the on call doctor thought the bleeding was from a muscle that was not clotting. They were going to try different methods first to stop the bleeding but we were worried he would end up back under the knife. Eventually, we were told they would not do surgery but he needed to be admitted.

He ended up staying 3 nights and required a blood transfusion. Needless to say, we did not have a relaxing weekend. I’m mentally and physically very tired but I have this pesky life I have to live and that requires income and responsibilities.  When there are genuine stressors happening, it is difficult to practice good self-care. Its even worse when under relax circumstances good self-care is minimal at best. I’m referring to a healthy exercise regime, eating well and regular sleep patterns. I’m the queen of sucking at good self-care (if there ever was such a title.) So this week I’m hanging on by a thread and hoping to survive the work week. Fingers crossed we get no more emergency calls.

Time for…Thanksgiving?

Posted on by Jinx

Today I finally get to have Thanksgiving with my father. Thanks to his poor health and one serious fall he has been practically bedridden since early November. Now he is on the mend. He has been going to physical and occupational therapy, with my boyfriend helping him in and out of the car. According to my BF he seems to be gaining more strength and is still his feisty stubborn self.

Since my parents divorce I’ve been in charge of making the Thanksgiving turkey for my get togethers with my dad if we are not going to my aunt’s house. There have only been a handful of years not spent with my aunt and this year is one of them. Sure it’s only 5 days till Christmas, but my dad isn’t going to miss out on his favorite holiday meal. And NO, this cannot be combined with Christmas because that comes with its own meal and get together.

As I’ve written about in A Lesson in Cupcakes, I don’t cook. fortunately, my mother taught me one of the easiest ways to cook a turkey. You basically slather it with oil and spices, wrap it up tight, and cook it at a low heat all night and morning…or basically take it out whenever you are leaving for the get together. I don’t even defrost it! I’ve made it the same way every time and it turns out perfect. Does that stop me from stressing about? hahahahahaha of course not! 😀 Thanksgiving has always been a huge treat for my dad. And now that his diet is much more strict, this is one of the rare treats he will not deny himself.

So this morning I noticed I wasn’t overwhelmed with the amazing aromas of turkey like I normally am. I could smell a hint of it and I attributed that to having probably smelled it all night and was just used to it. I go to the kitchen to make my coffee and see the oven is off!! HOLY SHIT!!! I quickly turned it back on and the oven was still warm so I’m hoping it only turned off a short time ago. We leave for my dads at 2:30, so I will check on it at 1. I will also be watching the oven like a friggin hawk! So much for easy 😦

Trying not to freak out, trying to be accepting of whatever may come. The chances are good that the turkey will be fine…AAARRRGGG!!! OK I’m wroking hard to chill the hell out. Any positive cooking vibes would be very much appreciated. 🙂

My Dad

Posted on by Jinx

I feel like I should start this out by saying I truly love my father. I know what he is going through is horrible and I will do most anything in my power to help him through this. That being said, he is driving me crazy!

As my dad’s physical health continues to decline he has been relying more and more on my boyfriend to help him get to medical appointments. This requires a lot of time and lifting as he doesn’t have enough muscle strength to get out of bed or even a chair. This weakness was worsened due to two falls he had in one week, injuring his back. Since my BF is currently not working he has been available anytime day or night to assist him.

Now, having lost his job last month, the plan was BF would go back to school. He’s already applied to a local junior college and will be taking the assessment tests to determine which math and English classes he needs to hopefully begin the winter semester.

My dad called me last night with an update on how he’s doing and to let me know the doctor approved him for physical therapy as he may be able to regain some mobility. After the small take and updates he said there was something he had to tell me before we hung up. He began by saying my BF is a “GEM”! He doesn’t know what he would do without him. He is so kind and willing to do everything and anything to help him. He is amazingly “Strong, with a capital S!” (His exact words). “I never fear he is going to drop me”, which my father has never been dropped but he didn’t feel safe once when being lifted by paramedics. He has eased so much of the burden off of his own significant other “A” and she no longer worries or stresses as much knowing she can count of my BF for help. “Just knowing I can count on him gives me hope!”

The outpour of compliments, dependency, neediness and praise was intense. I’ve no idea where that came from and it was a bit scary. I had told my dad only a week ago of our plans of BF going back to school. So I tried to be as tactful as possible by saying I was really glad he appreciated the assistance, but he does know this 24hr availability isn’t going to last forever…right? I emphasized that I have been encourage him to find a home care provider that could do exactly what my BF is doing for months now.

After all those words of praise, going on and on, all it took was for my little snippet of reality for him to say, “I know.” I asked if he was angry and he said, “No.” He was so quiet I finally asked if he was going to interview care providers and he said he would. I back peddled a bit stating that of course BF wouldn’t be in school 24-7 so he could probably help out when not in class or needing to do homework. He stated he knew that and had already discussed it with him. Clearly the conversation was over. Oooook.

I’ve no idea what type of response he wanted from me. I don’t know if he wanted me to offer BF up full time or what. I asked my BF about this and he said my dad had joked about him living with them full time to help out, but it was a joke. I’m thinking maybe not. Right now I’m trying very hard not to read more into it. I can’t feel guilty for us trying to move forward with life. Then why do I feel so…wrong?

And the other stuff

Posted on by Jinx

Along with the depression stuff, infertility stuff and aging stuff, I’m also encountering the aging parent stuff.

I am the only child of divorced parents. Nothing new or exciting, that seems to be the average family unit now a days except there is usually more than one child. Both of my parents found other people with whom they are more compatible so I guess it wasn’t all bad.

The problem is, my father suffers from a rare degenerative disease call Polymyositis. This disease essentially is the body attacking itself. The immune system treats the muscles as foreign objects and attacks accordingly. The only way to stop this is to take an immune suppressant. The problem with that is with the immune system held back, it struggles to fight things it’s supposed to like the common cold, or a scratch.

My fathers mobility is dwindling and he struggles to walk even with a walker. He’s fallen several times and it’s been sheer luck he hasn’t broken anything. I’ve begged him to get a motorized unit but he refuses. The problem with my father is that he is a strong-willed, intelligent, independent person. He has a sharp mind trapped inside a body that is becoming so frail he is as vulnerable as a newborn. It is horrible and I know he is miserable.

Fortunately, I live about 15-20 min from his home. Unfortunately, I’ve received too many calls from him asking for help because he has fallen but doesn’t feel it’s an emergency. He refuses to call 911 and wants my boyfriend to come and help him up. Even though he lives with his girlfriend she can’t be there  24/7, she cannot lift him, and she is also aging. I’ve told him he needs an emergency system in place like Life Alert, and he needs an in home care provider that can check on him at least once a week if not every other day. But he doesn’t feel he is “that bad” yet! It is maddening, it is heart breaking and drastic measures may need to be taken soon.

As a result of either the disease or the medication, he is also in the early stages of kidney failure. Though he has not started dialysis yet, his nephrologist has told him he may clear him for a kidney transplant. My father and I are not donor compatible, however, his doctor told him that if I am willing to donate a kidney on his behalf it could speed up the process of him attaining one. My father didn’t even think twice about asking me and initially I said absolutely. But, as I thought about it more and more I realized he hadn’t asked anyone else. I asked him about this and he said to me, “I don’t feel comfortable asking anyone else and well you don’t have kids.” WHAT?! Is that how I will now be of some use in this world? Can’t have kids but I can donate a kidney so my dad can get one.

I mentioned to him that I was seeing a fertility doctor and his reaction consisted of shock and despair. He responded, “that means you can’t donate a kidney.” Instead of recognizing the struggles of his daughter, he sees a possible kidney that may not be available to him. I love my father. I know he is afraid of what the future holds for him and perhaps his only shred of hope was this transplant. Honestly, I can’t see how he can be cleared for transplant due to his numerous health issues, but hope is hope nonetheless.

Now all that crap was the rational, adult side of me. The child in me is angry, hurt and feels used. Really dad? Am I disposable because I don’t have children?

My depression feeds on this. The inner dialogue that plagues me now:  “how can you not help your father”, “you should want to do anything to help your dad if you love him,” and “you can’t have kids anyway so this will be some difference you can make to someone.” Oh, it goes on and on.