July and my mom

[hearts and roses]

Well, this month was really really emotionally draining. My mother has bed hopped between my sisters and my house - two weeks each.

Her condition has really declined fast. She will be in the middle of eating and ask what we're having. She has asked me, no lie, at least 100 times what my H does for a living and how long we've been married and where we met. She asks me almost every evening why I'm giving her medications and why she has to shower and why she has to wear those "fancy fake panties" (I refuse to call them diapers)...and it goes on and on.

While she's been here, my sister and I were able to get her to a lawyer to sign a living will and grant us each power of attorney over her financial and health/medical affairs. I opened a joint account with her at my bank. The plan is she's moving to CT so she can be near more family - in PA she only has my one sister who is always very overbooked and loses her patience with mom on a regular basis - we just can't see it being a good fit as mom's health and mental state decline.

We're in the process of applying for state funding and finding a nursing home for mom, but in the interim, beginning in September, she will likely live with my sister during the week and me on weekends, which totally inhales deeply since I work full time all week - my weekends are my only time to do things, clean, run errands, go away, etc. Oh well, it's temporary and I don't want to sound like I'm complaining.

It's actually been a pleasure for me to be able to help my mom and care for her - it really has been. I hope that I'm teaching my daughters a lesson or two about empathy and compassion, lessons that will help them when its my turn. Ugh.

But it is tiring and my house is a mess, I'm exhausted, I do loads of laundry every day, clean the bathroom several times a day, and I had to take two weeks of my vacation to stay home and care for mom. She asks me all the time, "Do you work?" and I tell her and then she asks, "Oh, are you on vacation then?" and I tell her I took vaca so we could spend some time together - that always makes her feel good and I get to see her stunning smile and glittery sparkling eyes.

My mom is a large woman, very. So she gets horrible chafing and so I need to bathe her everyday, and it's hard work. It hurts my back a lot. And mom gets cranky at times and sometimes refuses to shower, but 3.5 minutes later, I ask again and she is fine with it. She asks for bread or pretzels or ice cream or cake or something else she can't have and I say no....3.5 minutes later I present her with a healthy snack and she is thrilled - she has completely forgotten about her original request. There is a certain blessing to dementia. And you have to have a sense of humor at the beginning because I know it's only going to get more and more heart wrenching as she continues to decline.

The other day she signed her name with my dad's name, having completely blanked about the fact that after my dad died she remarried. I had to stop everything with the banker lady and start over. She asked me every 3 minutes why we were opening an account..."because mom, we need an account for when you live here in the Fall..." and she says, "I don't want to live with [sister], I want to live with YOU - you know why" all cryptic-like and the banker laughs softly to herself. Thank God I've banked there for 5 years and it's a small bank - they all know me and know that I'm not trying to steal my mother's money. Not that she has any....HAHAHAHAHA!!!! She has NOTHING except her kids.

And you know, with all this going on with my mom, difficult child has been not that bad. I won't say she's been great because she's still not working, but she's been off her medications for a couple of months and seems to be holding her own...I think the absence of Monkeyboy in her life has done wonders for our relationship - heh heh. She helps me with my mom, a bit begrudgingly at times, but she does help. We play games with mom and difficult child jumps in there and plays along. My mom says the silliest things and cracks difficult child up and everyday when my mom asks difficult child if the markings on her arm are a tattoo, difficult child smiles and says "No gramma, its just magic marker, don't worry." We look at each other and grin. There's just no point in having mom get upset over that anymore. She doesn't remember that she's asked difficult child several times about the tattoos on her arm every day! lol.

Today my mom is going to my brother's on LI. I have to meet him halfway and I have to say, as much as I'm thrilled to have a few days without the daily care routine (I'm actually looking forward to work!), I'm sad to see her go and I'm so worried about her. My brother's wife can't help mom bathe (she has back issues) and their two adult daughters won't (they are 23 & 25), which means mom will be on her own and that's a worry. They are not the healthiest eaters and my mom loves that - but she can't unhealthy food and I worry that my brother will not keep her on her diet. If she eats too much salt or sugar, she could instantly have a stroke or go into a diabetic coma. Its a scary thing. My brother even joked that we could save ourselves time and money by just letting mom overeat on twinkies! Oh my goodness!!!! I am hoping that when he sees what a toddler she's become he will be a more loving and caring person for her.

Sometimes we just sit and hold hands and sometimes she wakes up crying in fear, asking me over and over again what's going to happen to her, where will she go, who will she live with...she told me she's afraid to go home next week. I don't blame her. I'd be afraid to be all alone too if I was her (She's going to stay with my sister in PA until she moves up here).

Anyway, this has been such a strange time for me. I can't explain it. I've tried to start my sentence to describe it several times, but I cannot find the words. My mom always says to me, almost daily, "Jo, getting old inhales deeply". Hahaha. You have to laugh or you will cry. Thanks for letting me get that out. Now I have to go do some more laundry before we pack her bags. Tomorrow is my 12 year wedding anniversary and I'd love to be awake enough to enjoy it! Maybe H and I can take a trip down to RI for the day.

 

[Lothlorien]

I'm sorry that your mom is declining so fast. It's very draining on you. I'm glad you will have some time to yourself and you can enjoy your anniversary!

 

[gcvmom]

That's a very challenging responsibility to take on. Your mom is lucky to have a family that will look after her -- at least your sister is there and can shoulder some of this burden with you. It's great that your difficult child is old enough to understand and participate in this stage of your mom's life -- and yes, the boyfriend being gone is one less distraction for her. I hope you are able to get some respite help for you and your sister until the state funding comes through for full-time care for your mom.

We are in the midst of similar health issues with my dad's remaining 80-something year old brother right now. He has been in and out of the hospital all summer due to heart problems first, then contracting C-diff at the rehab/nursing home, then suddenly becoming paranoid and delusional (we think he's having seizures because of damage from years of TIA's) and he refuses to take his medications. He called 911 from the nursing home thinking they were trying to poison him with the medications, and accused his wife of 40+ years of stealing money from him. He's become very hostile towards everyone, and is now back in the hospital so they can try to stabilize him.

It's sad and frustrating to see people go through this.

 

[DammitJanet]

Jo...all I can say is I so know what you are and will be going through.

 

[witzend]

My grandmother lived with us when I was a girl. She had declined much further that your mother by the time she came to stay with us. There were hallucinations, she couldn't dress or bathe and was beginning to have toilet issues. She wandered, especially at night. Thank goodness the front door was too heavy for her to open by herself or who knows what would have happened. Years later her sister had the same problems. There was a lot of fear with both of them as to moving to a nursing home. The thing is, if there had been better planning earlier on, they could have gone somewhere more pleasant than where they ended up, which was a basic care facility where they both went to die. My grandma had early onset, and was younger than I when her symptoms began. Her sister was not quite so bad, and treatment facilities had improved vastly over the years.

In hindsight, spending down and/or waiting for the symptoms to become so severe that we couldn't handle them at home was not the way to go. Given the chance to go through the situation again, I would have looked for an assisted living alzheimer's facility early on for my aunt (I was her guardian and conservator) while she still had the ability to enjoy some of the things that they had to offer. Then she could have spent the last months of her life (she went downhill rapidly) being someplace pretty with other people and having staff who were well prepared to watch over her and deal with her fears and losses without taking them personally.

Having been there done that, my advice to you would be that if it is financially possible, place her someplace where you are comfortable with the facilities. They will work with her finances, even if she doesn't have much. Regardless of the facility, they are all happy to help her spend it down then accept SSI. You might as well do it someplace she'll enjoy.

I think it's just as hard for them to wonder who you are as it is for you to know that they have forgotten you.

 

[Star*]

Jo,

Reading your post made my brain so quiet. I guess we all get so caught up in our own struggles or what we perceive as hardships that we have no real clue what a hardship is day to day. I sat here and visualized what a day in your life must be like with your Mom, for you - and also what it must be like to have once been sharp as a tack like your Mom and now ask repeatedly things that are so unfamiliar like the tattoo issue. I'm glad your daughter is able to find some softness and humor in it for her grandma. She sounds like she has a huge heart. I'm glad she's stayed away from the apechild. (visions of knuckles dragging the ground and her putting old fashioned roller skates under his hands to keep them from getting bad)

I'm really sorry that this is your world. I often felt like when my dad died so suddenly I got ripped off, and still do occasionally. It sounds as if you're able to take the best of a bad situation and have learned to accept the change with dignity and grace.

What you're doing for your Mom is remarkable. We all know life goes on, but in the mean time you've found a way to hear music in the chaos and continue to love. Bravo.

Hugs
STtar

 

[susiestar]

Sending my love to you. It takes a very loving person to take on this kind of duty - though I know it is a labor of love to you.

Please check with your lawyer about the durable medical power of attorney. In my state it must be signed to handle healthcare issues. Reg power of attorney is not enough. but each state seems to be different.

sending hugs

 

[flutterbee]

Jo -

I know this is a difficult and sad time for you. But, reading about your relationship with your mom and how you and difficult child are enjoying the time together made me smile and tear up.

(((hugs)))

 

[hearts and roses]

Well, we're back (difficult child and I) from meeting my brother for his leg of mom's stay. It was a pleasant ride, in spite of the torrential rains all the way there! Man, I hate driving in the rain.

I had downloaded some oldie music of my mom's onto my iPod to listen to on the way. It was such a joy to hear her singing along with the songs (getting most of the words wrong as she's always done - hahah). I let her eat a buttered bagel on the way - her one joy, full strength white breads and butter! Ick.

Thank you for your kind words. I am the youngest of five siblings and feel lucky that despite having me at an time in life when most other mothers were way past the point of being finished with pregnancy, my mother was so sharp and 'hip' on the inside. She didn't always do things 'normal' and our house was a nightmare at times, but she was pretty cool most of the time. Seriously, the woman was way beyond her years - I guess that's another reason it kills me to see and hear her so confused.

Anyway, she sang along with all the songs, old and new, tapped her feet, and danced in her seat.

She asked me how many kids she had before we met up with my brother - that was horrifying, but it is what it is.

Witz, we have 4 nursing homes picked out that we've applied to so things are in the works. Each one said there is about a 3-5 month wait list. We'r keeping our fingers crossed she gets into one of the first two, which is more likely. The best is that not only are they really nice places with excellent staff and come recommended by friends, but they are both also within 10 minutes of both my house and my sisters - we're thrilled. I think we can swing things for that length of time. Any longer than that and I think things would get crazy. She's too far gone for assisted living and almost all of them up here in CT are private pay, which even all five of us together wouldn't be able to swing - we all have kids in college! I am holding a positive thought that our prayers will be answered and the Universe will make it happen. In the meantime, I know it sounds sick, but I pray that my mom is taken peacefully because I know that inside she will die when the realization hits on some level that she's in an institution - no matter how nice they are, it's still an institution. She told me the other day she'd take poison if we tried to put her in a home. I asked her where she would get the poison and she said, "Don't you worry about it, I have my ways..." Hahaha. She's such a tough old bird. And yet, a not so tough little toddler at the same time. I just hugged her and told her not to worry about later - lets just enjoy the moment.

Star, I just about peed my pants laughing when I read "I'm glad she's (difficult child) stayed away from the apechild. (visions of knuckles dragging the ground and her putting old fashioned roller skates under his hands to keep them from getting bad)" - Too funny!

Susie, we had all the papers drawn up with an attorney - it's durable throughout the US, so we're good. Thank you.

I think she will be okay with my brother for a few days. I told him everything he needs to know and made a list of what her schedule is and what foods she's been eating here. I can't control what he does in his house, only in mine. Thanks again~

 

[mrscatinthehat]

Such an important thing to do. Many hugs on your journey.

beth