EXTREME Caregiving: Finding Balance


EXTREME Caregiving: Finding Balance

ocean-168133_640We've had an action packed few days. Again I see how profoundly a change in how you think about things can affect EVERYTHING.

Friday morning we had many visitors. I hadn't REALLY realized it's been three months since the EXTREME part of our journey began. My days go by, it's all about medication times and school days, what days nurses are coming, and in between all the little fires it seems I'm always putting out.

SIL had a visit from her social worker, a new guy. Had to run down the whole of the situation, including how she even came to be in our care. He could not get over it. I forget our situation is that unusual until somebody asks. He kept asking where is HER family. I had to say again she wasn't really sick when she came to stay, it was just supposed to be for a while until she found a job and a place after taking care of her mom. She had plans to go back to Alaska, that was her idea all the while after taking care of her mom. How I became her caregiver just kinda happened, as she got sicker everyone else in her life stepped away, her BFF rarely calls.

As I realized its been three months, I thought about where she was and what she's doing now. All the difficulties and arguing are a miracle. Two weeks in, and she was in the bed non-verbal. I'd spoiled her because we all thought she only had weeks. Three months later, she's better, we are speaking of the six month review. Of course it can change at any moment but we must prepare for the long haul. Her first RN was shocked. After seeing how she was, he can't believe she is still with us! I told SIL the social worker is there for her, she can complain about us to him. lol! She told him we keep her in the bed too much. He asked if she knew why. She says, "Oh, I fall too much, they are trying to keep me safe, I know I need to stay in the bed, I just don't like it!" Hahah she's rolling her eyes and making snide remarks.

Today she told me I was mean and evil. I laughed, I said no, I'm actually really nice to you! She said, "How would YOU like it if I put you back in bed?" I told her if I kept doing a stage dive on my face on purpose, I would EXPECT her to put me in bed so I wouldn't get hurt. She said she knows we are good to her. She began to cry, talking about MIL last months in a nursing home. There'd been no choice, mil had MERSA, but she was able to be home for a month before her last hospital stay. There may come a point I can no longer keep SIL home, but that day is not today. I told the social worker I am not under any outside pressure to take care of my SIL, I have full support of everyone, especially my husband (her brother) to put her in a nursing home if that time ever comes.

Why HE seems to differ from dementia is logic seems to work best of all on her behavior. When I get to THAT point and tell her she must stop behaviors that will hurt her or they will end up sending her to a nursing home that behavior subsides--only to be replaced with a new one! It seems on the whole, she's been more lucid. She talks more and understands more. She has always been a VERY smart woman and she's still using those brains, albeit to manipulate and cause havoc like a 4 year old.

She's falling again, but now she's falling HARD. I'm a straight shooter, with me, what you see is what you get. Perhaps this is a mistake with SIL. I'd told her I knew she was falling because she was catching those falls and slumping and rolling and not getting hurt. Well, now she's getting hurt, she's throwing herself full force down, it's awful. She's cut her arm on the tile. Now she's falling, probably because I'd said she was only falling on the carpet! I've had to make a new rule, one fall and she's in bed the rest of the day, period. How can I let her keep falling no matter HOW much I want her to keep her mobility? She's sitting on edge of bed, propped sort of lying back pillows all comfortable, pillow on lap. Within a minute, she's thrown pillows on floor dangling forward and falls smack on her face. I'm holding her back just semi erect and she pushes pushes pushes forward with I must say, considerable strength, to be folded in half ear on knee. Then she rocks to dangling like she's trying to get something from floor. If I'm not there she's going down hard! I left her on the floor awhile once, put a blanket and pillow and she got a stiff neck. This falling is not an accident, she is using so much strength and all her might to do this. WHY? This happened twice, I can't let it happen anymore! And she's talking, arguing with me she wants to walk around, yet refuses to stand erect except for sometimes she's walking and standing pretty straight. It makes no sense.

Friday while I was speaking to social worker, I just got through telling him she hadn't had hallucinations in two weeks. Within minutes she's calling out there is a guy in her bed, then later there's bodiless children in her room. Maybe this is a coincidence but probably not, she can hear everything from her room. If everyone here wasn't witnessing this, I swear I'd think I was crazy. It feels crazy to even think a woman this sick would be doing these ridicules things. It would be different if she was walking and falling, but from a seated position putting that much effort to face plant is beyond me. I found while I was trying to put her back seated how much strength she has! She still stands on one foot to get in bathtub to have her shower, it is by no means weakness and a faint where she can't hold herself up, that I could understand!

My new approach is I will get her up every morning and sit her down to potty and give her breakfast and medications as usual. I've told her its her choice from there. If she goes too forward about to fall or falls from that seated position I'm putting her back in bed for that day, rails up. I don't know what else to do, she's hurting herself now and it's willful behavior. I hate it, I feel like a warden! I will get her up and walk her around but it seems now she cannot even sit without supervision without putting herself on the floor. I ask her why she does it and she just says she doesn't do it on purpose, but won't elaborate. She is also refusing to feed herself. I have to spoon feed her or she won't eat. She can, she just won't, and when I feed her and she's eating it all up! Yet she's angry and feeling controlled. I tried putting the soft fall mats hospice provides on the floor, but it made her more unsteady.

Hospice agrees this is willful behavior and see no problem with the new approach. It is so crazy that she's walking better and talking better but is going to be in bed because she's throwing herself down. LVN flat out told me SIL is very smart and manipulating me and I am doing a wonderful job in taking care of her, that everything I'm doing is showing love and care so in letting SIL decide if she wants to be in bed or not is not my fault. She forgot that she is my husband's SISTER, she was thinking it was his mom. Everyone forgets SIL is only 53, she's only 9 years older than me!

Saturday I had a house full! My dad's whole side of the family came to have a family game night and we had a blast! Uncles aunts, cousins. It was the first time in months I could relax! I didn't have to worry about rushing to get home for once! Lol Of course we had a giant pluming problem! But all was well anyway, we made it work. Strange thing, SIL slept through it all, the talking and laughing and everyone staying late. My house is open concept, she can hear all but on she slept! I checked on her several times, but she slept. When everyone left I got her up for medications and she hugged me and said, "Thank You for the party!" She must have enjoyed all the talk and laughter! I had every intention of having her out there with us, but she wouldn't wake up. lol But she enjoyed it anyway. It was the first time in forever she didn't have me running all day.

Again, I am taking my life back, caregiving is only a part of who I am. My aunts as well as Mom reiterated again how I must do things for myself. I can't let SIL behavior affect my moods like that. I'm doing everything I can. I can't stop how SIL wants to act. I'm sure a big part of it is anger about her illness and there isn't any more I can do to help on that front. I also have my life to live and I am taking every opportunity to do so. SIL is stable, all her vitals continue to be good!. She is making a choice to use her days this way, but I am in control of how I react. I am just not so stressed, I've let go of that part. I am doing all I can and I can't make her help herself. I also refuse to be controlled. I'm just doing how I have been, but I am not on her beck and call. She can make her choices and live with them and I am standing by my boundaries. I can't keep lifting her all day, one and done, and we will try again the next day. I'm through arguing and getting angry. All I can do is keep her clean, make sure she eats and takes her medicine. The rest is up to her, that is all I can try and do.

I must realize SIL's illnesses and all it entails are like the tide in the ocean. I am a strong swimmer, have been a swimmer my whole life, and I love ocean swimming best of all. You never swim against the tide, you go with it. You can't fight it, it doesn't know you are there and it will drown you if you don't pay attention. You tread water and go with it and you will always get back to shore.

Thanks for the read and allowing me to vent! All your comments are so appreciated, at times it seems that is what gets me through!

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Hansolosgirl, you are coming to a place where you are healthier in mind and spirit. I pray for your health also as you go through this living arrangement with SIL. I love that you have a male social worker who is understanding and accepting of the situation! I feel like Control Issues are what is blowing in the air this season, just like the pollens out here in California! Your ocean analogy seems right on with where a lot of us are today, we need to remember not to take the tide personally, just allow the flow and move with it - it will be easier that the fighting we've experienced. My Spring Hat is off to you. Thank you so much for your posts, they do impact my day in a weirdly positive way!! BTW: If I ever get to go on a Caregiving Cruise, I definitely want you to be one of the folks going with us!


@Mar you had your mom in a great place! Here, where she could go would not be that way. When my grandma had to go for a month for medical reasons...we took turns sleeping in her room. They're understaffed and over filled. Our hospice workers also work in the NH and say keep her home as long as we can because they're bad. Good idea to give her tasks...she does help me with her laundry....I need to give her something to do


I hadn't known the story of how she came to be with you, although I did know you are caring for your husband's sister, and your mother is caring for her son-in-law's sister as well! It is a beautiful thing, you all have my respect.


I have known you such a short time, but I have seen you work through this and come to this \"balance point\" so quickly in my opinion!\r\n\r\n I can verify what might happen in a nursing home -- my Mom had dementia and would try to stand when she couldn't bear weight any more (wheelchair bound.) The skilled care facility didn't make her stay in bed, they knew the social interaction was important for her. So they gave her a special spot right in front of the nursing station, where lots of people came and went all day. They put her in a very comfy chair, overstuffed so she couldn't really stand up from it, although she would sometimes lean out of it, she couldn't really get harmed as from a fall. They would give her a task like folding napkins, or cards to sort, she took the responsibility very seriously. The important part is, I considered her very cared for, and personally attended to, not neglected in any way. They adapted things for her safety and her personality at the same time, and I was thankful. \r\n\r\nI loved your final word picture about the waves -- such a fitting picture -- when we swim against the tide it is so exhausting it can cost us our lives. Let it carry you, and you'll make it to shore. Lovely.


<a href='http://www.caregiving.com/members/jen/' rel=\"nofollow\">@jen</a> oh yea, her Lvn worked in nursing homes...she says I'm right on with the reality of what would happen. No place could take on the liability of her falls, she'd be in bed period. It may have worked, she didn't throw herself down from a seated position so far today!

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