Bringing My Mom Home

Jen

Bringing My Mom Home

Jen
aircraft-635521_640I am back from hiatus. In all fairness, I wasn't really here before. I joined up to get advice on how to handle my mom's move across the country. I didn't find anyone who had done the same, but I found something just as valuable, if not more--companionship and support. Thank you, one and all.

I was fairly frantic in the month before my mom's move. It wasn't exactly planned. She had a stroke in 2013 and had remained in a facility ever since. The most recent facility provided nothing short of neglect, in my opinion, and she was hospitalized three times in December 2014/ January 2015. She was on state aid in Wisconsin, which doesn't carry over to Arizona, where I live. Arizona allowed me to sign her up, but they wouldn't begin to process her until she was physically here. So, it was just a matter of getting her here and hoping for the best. I had to get permission from the courts to move her--I'm her guardian, but she has a protective placement order, because the courts were afraid her husband would try to remove her from care. I had to give the facility 30 days notice, and I used the time to get the house as ready as possible.

I'm a single mom of three, two of which are very young, so I knew this would all be a challenge- physically, emotionally, and financially. I placed an ad on Craig's List asking for donations and an absolute angel came to my rescue. She actually researched me here and read "My Mom's Story," and then donated a hospital bed, a wheel chair, a walker, and a shower chair. (BTW, if anyone noticed my name change, that's why. I'm glad she found me, but I need some anonymity to be able to feel like I can speak freely.)

The Trip

As I mentioned earlier, I have three kiddos, and I knew I couldn't manage them and my mom at the same time. I left the younger two in the care of my oldest--he's 17 and awesome--and I planned ever so carefully, so I would depart right after my little ones went to bed one night and be home with Grandma before they went to bed the next night. What could possibly go wrong?

For starters, my mom is even less mobile than I expected. She can't stand alone or use her walker at all. Every transfer requires a gait belt and some oomph. The facility was using a machine to move her, even to go to the toilet, every single time. Sometimes, she can't stand at all, and transferring her into a car alone just does not happen. We had two flights--one from a tiny airport to Chicago, and another from Chicago to Phoenix. We wrestled her into the car and headed off to the airport, then wrestled her back out and into her chair. As we waited to check in, the words "Flight Cancelled" appeared on the screen which hosted the airline's only outgoing flight that day. I just about died. I had no place to go with my mom, no transportation, no money, and my kids were home alone. All flights out that day were cancelled due to bad weather in Chicago. My only other option was to sit tight for 24 hours and take a flight through Detroit. We were lucky enough that a family member agreed to take us in for the night, but it was a split-level home, so we only had access to the kitchen/ dining/ and living room. My mom and I crashed on the sofa and, although soft, it was too soft for my mom to even sit up on in the morning. It took roughly three hours to get her changed, onto a commode, and back into her chair that morning. At one point, I excused myself for a cup of coffee, and I stepped outside in the sub-zero temperatures and had a cry. What the heck was I thinking? Physically, I wasn't sure if I could care for her, let alone manage all the lifting that would be required for the flights. That's something I think only a disabled person or a caregiver can appreciate--two flights. TSA, lifting from chair to flight wheel chair to seat and then back out again... twice. Eight transfers, with a non-mobile person. Down narrow aisles, all the way to the back of the plane.

When she needed a restroom in Detroit, I just about died. Not yet knowing the extent of her abilities, nor having taken her to the bathroom before, I was reliant entirely on her to guide me and tell me what to do and when. Again, she's not mobile, and she's not used to standing, and her walker was in checked baggage. So, it was on me to help her up with the gait belt, get her holding onto the bars in the bathroom, remove her pants, and get her to pivot and on the toilet. She got up and I held her steady, but as she reached for the bars, her knees buckled. I was able to slow her fall, but I couldn't stop her. I also couldn't lift her back into her chair on my own, so I just changed her on the bathroom floor (we were too late for the potty) and I found some random airport employees to come help me lift her onto her chair. Thank goodness my mom has a sense of humor, because we laughed the whole time. Had it not been for that, we surely would have been in tears.

Settling In

We got home and got settled. I don't know why, but I really thought I'd be helping her start her day, and then I'd be able to let her go about her business unless she needed help with the restroom or some other odd or end. It's not that way at all. I'm spending the equivalent of a full-time job providing direct care. The problem is, I already have a full-time job, as well as three kids to look after. We have a lot of battles going on as well. I work from home, sometimes as late as 2 a.m., because that's when my house is quiet. My mom decided that 3 a.m. to 4 a.m. was her ideal wake-up time and was initially very demanding that I get her up and into her chair. I'm just not functional at that hour, with so little sleep, and one morning, she got stuck at the edge of her wheel chair, with the pad scrunched up so she couldn't scoot back and she "couldn't" (I think it was more that she wouldn't) lift her rear two inches so I could adjust her cushion. She cried, screamed bloody murder, demanded I call family to help, insisted I call the fire department, and told me I was mistreating her. I tried everything I could to move her, to lift her, for hours, but to no avail. Around 5 a.m., I called my brother and he came and helped. Of course, with the warning that he wouldn't be able to "come running" every time we needed something. At that, I told my mom no more early wake-ups. I would come help her at night if she needed it, but I would no longer attempt to transfer her before 6am.

This is all new. I don't know where to draw lines. Where do her rights end and mine begin? When is it okay to say, "no?" Obviously, the middle of the night transfers were not a good idea, but what about when she issues other odd demands in the middle of the night? I've been overdoing it for sure. I caught the flu and didn't fight it like usual. I wound up with a respiratory infection, sinus infection, and ear infection. Lack of sleep and stress have been doing me in. I have no help and am totally alone in this. Despite my illness, I had no choice but to push on and continue to care for my mom and children, and so I did, but it's not healthy.

I was expecting state benefits to kick in soon. I expected long-term care to provide her with physical therapy, as well as some help for me--the occasional in-home care provider or respite care help. Now that she's here, they tell me her husband makes too much money and she may not qualify, but they're still processing her application. She had long-term care benefits in Wisconsin, but, again, benefits state-to-state don't transfer and each state has its own rules. I really don't know what I'll do if the state doesn't approve her. I don't have a choice but to push on, but I swear, there's a real chance this might kill me. We're all in agreement that if it comes to that, I will have to start divorce proceedings on her behalf, so she can qualify. So, then it will be at least four months of no therapy and no help, plus the added expense of legal fees.

Generally, she's good natured, but not always. Cognitively, she understands some things, but not entirely. She understands, and is okay with, not getting out of bed before 6, yet she still woke me at 4 today and said "it's morning" when I went in to see what she needed. She's talking about renting a place of her own, but she doesn't seem to understand the numerous issues behind it. She's talked about applying for work, but doesn't seem to comprehend she can't actually perform a job. I can't get her to use a regular toilet, and she refuses to shower. Everything is done in her bedroom--bed baths and commode. Sometimes, she refuses to use the commode or can't (or won't) stand to transfer to it.

I'll be floating around as time allows here. I've been reading everyone's stories, looking for tips and tricks. I need all the help I can get, and, so it seems, the only place I will get any assistance is here and through your experiences.

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Jen

<a href='http://www.caregiving.com/members/denise/' rel=\"nofollow\">@denise</a> Thank you for your kind words. I'm still learning, and this site has been very helpful!\r\n<a href='http://www.caregiving.com/members/hansolosslavegirl/' rel=\"nofollow\">@hansolosslavegirl</a> Thanks for your response. It sounds like you've been fighting an uphill battle too. I hope things continue to improve for you.\r\n<a href='http://www.caregiving.com/members/janshriver/' rel=\"nofollow\">@janshriver</a> Thank you for the support. It doesn't matter how much you have going on, caring for someone is a lot of work. It's amazing you were able to keep up with the trips as long as you did.\r\n<a href='http://www.caregiving.com/members/lily/' rel=\"nofollow\">@lily</a> I'm sorry to hear about your struggles, but am glad (and inspired) that you have found balance. Thank you for sharing.

chaya

Jen, I was very moved by your question, \" Where do her rights end and mine begin?\" I thought about that a lot last fall, when I fell into such a severe depression, I had suicidal fantasies. (Ok now, got help.). I've been adamant that I would never put Sam, my husband with ALS, in a nursing home. But at that moment, I realized that my life was at risk too. And I also decided, really really decided, in my gut, that my life is just as precious as his. I'm not willing to die so he can live. One change I made that's helped me keep him at home is to stop and ask myself, for quality of life things I was doing automatically to make things better for him, \"Do I really want to do that?\" If the answer is no, I try to give myself permission to say no. Eg, he always wants me to sleep downstairs with him; I want to sleep upstairs, in my own space, every few nights. I just do it. Your situation sounds much harder than mine--almost impossible. In my opinion, your mother has a right to be safe and adequately cared for. She doesn't have a right to interrupt your sleep except for a medical emergency. You have a right to your health and to devote the time that you need to work and your children. If those rights conflict, I believe you, not your mother, have the right to decide how to resolve it.

jan

You are so brave, courageous, amazing. My heart breaks to hear your story and your challenges. I have been moving my mother (now almost 85 and late-stage dementia) back and forth from Ohio to Florida every year, and we've decided this year that she can't do it. I have visualized the scene in my mind over and over and reading your post, I was absolutely there with you. Looking after my mother is all I do every day, all day; I don't hold down a job or have other family members dependent on me. Thank you for taking the time out of your intense day to share your story. Don't give up hope of finding help. I sure hope the state of Arizona approves her benefits.

Hansolosgirl

Oh Jen! Welcome, you will find support here, these are the nicest people! I'm so sorry for what you're going through....and with little ones too! I absolutely empithize about the transfers, it's so hard! I take care of my sister in law suffering a lot of issues with one the same as dementia. I too 'spoiled' my caree by running to her every whim. I let sympathy get in the way of life. Set bounderies. 6 am was good. I've made SIL a rule barring emergency no call zone from midnight to 8 am period. I leave her a snack and drinks easy access. No more telling me what to do, my house my rules. I'm trying hard to stand by them now because I went too far the other way and the last 3 mo have been hard. You have little ones, you have to set rules. YOU HAVE TO TAKE CARE OF YOU FIRST, or you can't take care of anybody. This will be harder than anything, but you have to. Good luck ! Praying for you!

Denise

Hi Jen!! I'm glad to hear from you!! \r\n\r\nWow. What a trip. Our winter weather made everything so difficult--I'm so sorry you caught by that.\r\n\r\nIt's so tricky navigating these new terrain. It's your house but she's your mom. Your relationship has changed and yet it hasn't. \r\n\r\nI think it's okay to say 'No' to middle-of-the-night demands. Whether you're working or sleeping, it's okay to put boundaries in place which protect this time for you. Obviously, you'll be available if she's ill but otherwise I think the requests can wait until morning. This is reasonable and rational. \r\n\r\nI think we can get caught up in \"pleasing\"--which is what really causes problems for us. I try to focus on maintaining--mine and my parents. When they do or so things that will jeopardize my health (including my sanity), I do express a boundary. I want them to be happy, I want to be happy. I want us to have healthy relationship. Sometimes, a compromise leads us to happy. If I don't speak up, I just resent and that's just awful.\r\n\r\nI hope this helps. I find writing presents a perspective. I also think it's helpful to talk it out with others, like us, who know exactly how hard it is to find the sweet spot--where everyone feels they have space and say. I think for that to happen someone has to take the lead. You're already proven yourself to be an incredible leader. :)