Posted in Tough Choices

Fall is in the air

Growing up, autumn was always my favorite season but that was before rheumatoid arthritis and fibromyalgia came into my life.  With the cooler weather, I have been waking up to stiff and swollen joints in the morning. I didn’t miss this feeling over the summer months.  These are the mornings where I am reminded that my RA is here to stay. My toe healed but my foot pain has continued on leading to the conclusion that my toe infection had nothing to do with my foot pain.

This is about the time of the year when I was diagnosed four years ago.  It is not a favorite anniversary but since I am human, I acknowledge its existence.  How can I not? It is the day my life forever changed and at the time, I thought it was for the worst.  While living with RA is hard, my life didn’t change for the worst.  Having RA changed me as a person and I am grateful for that.  Living with RA isn’t easy and pain can be debilitating but living with RA has allowed me to see the world more clearly and to take the time to appreciate the beauty all around me.

I have some other things happening in my life right now. I had recently made some plans but they had to be put in the backburner for the time being. My mom has been in the hospital.  She had a couple small strokes and the doctors are warning us that it is likely she will continue to have these and there is also a good possibility for a massive stroke. I have had to take a step back and consider my options. The fact is that my career or other plans do not surpass the urgency or requisite of being there for my mother. There has never been a question about which I would choose.  I always knew that mom’s health would fail and my biggest fear was that I could not be there for her. The fact is that despite RA and fibro, I am able and I will have to make myself available. I am also going to look into other options but taking care of my mom is priority right now even if it delays other plans.

Before my brother passed away, and it will be two years in less than three months, he worried about Mom and who would take care of her when she got older. I promised him that we all would but the fact is, I made that promise and I have to be first to step up to the plate. I just don’t know where to start. I just know that I want to keep that promise I made to my brother.  My mom is going to need occupational and physical therapy and that should help her in the short term but the likelihood of a full-blown stroke is imminent. Blood thinners and lifestyle changes will reduce her risk by a third but we still have the other two-thirds to be concerned with.

I know that many of you have had to deal with the issues that face your elderly parents.  I am there now and I could really use some advice.  My mom wants to stay in her home for as long as possible but during the day, she is all alone.  My brother is a college student who also works and usually gone from 7 am to about 10 pm. He is also still a kid and the responsibility should not be his alone.  That leaves my sister, my brother and me but we all have careers and families.  How can I make sure she is safe in her home? The first small stroke my brother was home and the second time, she called a neighbor for help and the neighbor called 911. What if she is alone next time? 

As far as taking care of an elderly parent, where do I start? Do I quit my job and become her caregiver or do I find some other way to make sure she is taken care of and safe. I honestly have no idea where to start and I could really appreciate some ideas and guidance.


9 thoughts on “Fall is in the air

  1. Is it possible to cut back or rearrange your work hours? I certainly understand her wanting to remain at home as long as possible. My ex’s mother wanted the same and fortunately there were 4 of us who could trade off and be there for her 24 hours a day. There may come a time when she has no choice of staying home. 😦 Have you looked into visiting nurses?

    1. I am considering all these options – cutting my hours, getting her a home health aide, and trying to work something out with my siblings. For now, I want to request her wishes about staying in her home.

  2. Lana: My heart goes out to you having to make these difficult choices. Like in an airline emergency when they tell you to first put on your oxygen mask, then make sure those around you have theirs on, you must take care of yourself first. You need to make sure you have your support system in place so you can adequately care for your mother. That may mean that you do need to take care of your career so you have the income for unexpected expenses. Next will be to determine how much help your mother needs and what resources are available to you. Is she able to take care of her day-to-day activities and grooming? Her doctor, hospital and even your religious organization can be helpful in locating helpers (paid or volunteers) who can come in during the day and assist your mother in her home. You and your siblings might determine a rotating schedule where one of you is there each evening. Eventually (particularly if she should suffer a massive stroke), she may not be able to stay in her home. You need to do some research into what assisted living or nursing facilities are available and what their costs are. I think the main thing is to do an honest assessment not only of your mother’s needs, but of each of your siblings ability to contribute toward meeting those needs. If someone’s career (for example) keeps them out of town so they are not able to assist by being there with your mother on a regular basis, perhaps they can contribute more toward the expense of having a paid helper. Every situation is different, and so is every answer. Sending you virtual hugs as you and your family work to find a solution.

    1. Thanks Carla. We never expected to have to make this decision so soon. I thought that we would not have to worry for at least another ten years but the situation is in front of us and we just have to figure it. I have contacted my local department of aging office to see what services they offer and how they can assist us in planning. I understand that there will come a day where Mom will not be able to remain at home but for now, we need to respect her wishes. Thanks for your advice. I really appreciate it.

  3. I’m sorry you are going through this right now. It is so difficult and gut-wrentching. I would recommend checking out home care/visiting nurses and asking not only for OT and PT and home health aide, but for a social worker, who will be full of resources to discuss with you. Also, is she able to go to a senior center or day program? Or is anyone able to work from home at her house?
    I would also suggest getting life line for her. I hope you are all able to find the support you need.

  4. I’m so sorry about your mother, Lana. Being the caregiver to an elderly/disabled parent is disorienting and difficult–it’s hard for even an adult child to become the “parent” in their relationship with their mother or father–but it’s something that most of us have to face eventually. As you know, I’ve spent the last couple of years away from my own home as I care for my mother in hers. I don’t know if I can give you any really useful advice beyond being patient, being as flexible as possible and–and this IS important–standing up for what you know is best for her AND for you. Because she’s “Mom” it can be tough to be assertive. It’s weird to have that relationship turned upside-down.

    That said, Carla’s words are practical and pragmatic. Taking care of yourself, first–and your kids–is so important. You can’t be supportive to your Mom if you’re struggling to make a living, be a mother, be the chief cook and bottle-washer, AND be her caregiver without having some sort of support system yourself. Please work with your sibs to even-out the responsibility for her. And use all the local resources available.

    My heart hurts for you. I’m sorry you’ve had to once again sideline your own dreams, but I’m also warmed by your selflessness and love for your family. Please take good care of yourself as this new thread into the future plays out.

    Thinking of you and sending courage, calm and inner peace…

    1. Thanks Wren for your kind words. I never seen anything wrong with putting my family first. I was raised to believe that was okay. My mom sacrified so much so that we that we could grow up to be competent adults and I am fulfilling my duty as a daughter.

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