"My legs feel like they are filled with water and will pop"!

[Marymartha]

Hello Everyone,

Mom is staying in bed much more now. I walked in her room this morning to check on her, she was laying there watching tv, something she never did in her past. She looked at me and said her legs felt like they were filled with water and were going to pop. I instantly thought oh dear, she's really sick.......her legs were fine. I then asked her if she needed to go to the bathroom and she said oh yes! I figured that she meant she wanted to use the toilet! It's a daily challenge to figure out what she is trying to communicate. When she is looking for her dead sisters, her mother, her father, I have to remember that she is in a different world than I. It was hard at first, but, now I just travel back in time with her as best I can, trying to be the teenager she thinks I am. She does not know me as her daughter much anymore, which I have turned into a bit of a blessing. She and I always had a strained as best relationship, when she forgot that I was her daughter, she was much nicer to me! It also took away much of the old resentments and fears she would stir up in me. Much easier to be a sister she loved instead of a daughter she argued with and tried to control her whole life. What I'm trying to say is that our relationship as mother and daughter is no longer, it's something I've accepted and actually come to like.

I am a 53 year old married woman, my husband works out of town all week, coming home on the weekends. I have a 14 year old yellow lab that has to be lifted up to get up, he's healthy otherwise, I constantly awaken, thinking either one of them will have passed, but, as I look, they are both just peacefully sleeping. Some days are worse than others, without this discussion board, I do not know how I could cope. I thank you all for all your information, thoughts, insights, and just plain honesty.

Dementia and caregiving are the 2 most horrible or gratifying things in my life right now. If I am not spiritually sound, mentally strong, physically feeling at my best, it can be a nightmare. It is also a huge learning experience. Here's to another day.

Cheers!

 

[MerryWive]

Dementia and caregiving are the 2 most horrible or gratifying things in my life right now. If I am not spiritually sound, mentally strong, physically feeling at my best, it can be a nightmare. It is also a huge learning experience. Here's to another day.

Hello Mary, I love this! I definitely feel like my four years caring have been a wonderful learning experience and spiritual journey, however it can be such a weight to bear! So nice to come on here and feel the love sometimes

Just wanted to comment, you probably know already, but in case your mother is getting fluid retention from her legs from lying down more, it is good to prop the legs up so they are higher than the body, to help keep the fluid (lymph) moving. Also a massage of the feet/lower legs is always good! Wish someone would do it for me lol

 

[Marymartha]

Hello Mary, I love this! I definitely feel like my four years caring have been a wonderful learning experience and spiritual journey, however it can be such a weight to bear! So nice to come on here and feel the love sometimes

Just wanted to comment, you probably know already, but in case your mother is getting fluid retention from her legs from lying down more, it is good to prop the legs up so they are higher than the body, to help keep the fluid (lymph) moving. Also a massage of the feet/lower legs is always good! Wish someone would do it for me lol

MerryWive, Thanks so much for the advice. I checked her legs, they are good. So weird to see such skinny arms and legs. My memories go back to when mom was normal weight, wore her jewelry, dressed so nice for cards, and put her lipstick on every morning. I think one of the hardest parts of all this was when she didn't care she had on sweat pants and a soiled shirt. Her hair has changed, it's more coarse, and unruly, and her rings just turn on her little fingers now. She would constantly check her watch, now she doesn't notice it much.

One thing that I did do to help with her roaming and wanting to go home was to slowly take her purse out of sight. It seemed that it was a visual cue to go somewhere. After about a week or so, she almost forgot about her purse. Now when we go somewhere, she doesn't ask for it. It was a huge step, and it worked. Also, I found that if I kept anything that looked like a suit case out of sight, it would not get her thinking she had to go somewhere. We have a decorated case in the living room, I had to move that. She would see it and think it was her suitcase. Little things like that made a huge difference. Also, when I turned on old movies for her to watch it would trigger her smoking and alcohol consumption gene and she would constantly ask where her ciggs and wine were. I learned that the shopping channel keeps her attention and it is bright and changes constantly, not bringing up old habits. She was a heavy drinker and smoker.

Putting child proof locks on the doors, pins in the sliders, and pins in the big windows was one of the hardest transitions for me. It felt so horrible to do, but, it's saved many an attempt to go home. Now she doesn't try to leave the house, but, I still worry she will try when I'm not in the same room. It's a safety measure that works.

Mucho love to everyone struggling or trying to make sense of weird behaviours, it's not easy.

 

[MerryWive]

Beautiful writing

This disease is so full of sadnesses isn't it? Yet somehow we feel honoured to learn such terribly intimate knowledge about our loved ones. It is fascinating and poignant to learn how someone's brain works.

I particularly loved this:

when I turned on old movies for her to watch it would trigger her smoking and alcohol consumption gene and she would constantly ask where her ciggs and wine were

That reminds me of a wonderful friend Jemima who has left us now thanks to the big C, but she would be like that if she'd had dementia, I can guarantee it!!