What's Happening in our Caregiving World?

[Mal L]

Of the different kinds of dementia, one of the main ones I have read of is lewy body dementia. I believe it is related to Parkinson's.

[dawnmn]

Jeannie, you are a wonderful daughter!!!!

[tic chick]

hey everyone !

things are pretty much under control now and so not much to write about.

i saw my mom about 10 days ago, i had so many appointments to catch up with, including getting an eye exam so i could get a stronger pair of glasses. i also was bitten by some mad insect and it left a 2-inch symmetrical bruise on my leg that had a clear center. well, i know that might be a tick bite, although we don't have those kinds of ticks in the detroit area, i was not taking chances. so i went to the doctor, was told to watch for certain symptoms and go to the er if something unusual happened. the bruise is fading, so i think i will be okay.

when i saw my mom last time, my sister came with me. my mom is in a slightly wider bed so they can turn her better to bathe her and change the pads under her. my mom was towards the edge of the bed and the rails were gone. i asked the nurse if i could have the rails up and she said she would have to get the supervisor. it is against the law in michigan to have side rails up on a patient's bed because of the fear of their head getting stuck in them. so, the director of nursing came up and talked to me. she apologized for my mom being towards the edge of the bed and said that prolly was part of my concern. well, yeah. so they moved my mom and changed the pad under her. she shouted, but she didn't scream in crazy pain like she did 5 weeks ago. the director of nursing sat next to my mom and talked to my sister and me. she said my mom had fallen from the tray table. it was the first time that a nursing home staff member had told me that.

i know the nh is afraid of being sued, but i think telling people is just courteous. they're not admitting guilt and it looks worse when they say nothing. i wouldn't have sued anyway. it's a horrible process and any money awarded to my mom would go right back to the state, because they are paying for her nh costs through medicaid. i can't blame the nh for my mom's actions while she has dementia. whatever penalties they face from the state, they will have to pay, because the state did send me a letter asking me to tell them about my mom's accident. it was for "third party liability", so that sounds to me like they will ask the nh to pay my mom's hospital costs for the 2 days she was in the hospital. they also had inspectors from the state there, the director of nursing told me that. michigan has a rating system for all nh's in the state and they are given graded ratings. that gives people a chance to see how good a nh might be.

while we were talking to the nh director of nursing, my mom started rubbing the director's back cause she was still sitting on my mom's bed. she was also playing with her hair and smiling. i was feeling terribly sad and jealous. my sister said, "we're jealous that our mom is paying so much attention to you". the director laughed, but i don't think she realized how much it did hurt to look at that.

so, i realize my sister is the same as i am...just another child who wants mommy, even though mommy wasn't a very good mommy.

and there's nothing either of us can do about that. nope, not a darn thing.

thank you for sharing and caring and walking with me ,
jeannie

[mrsjerome]

Jeannie
Sorry to hear of the troubles you have been facing regarding your mother. Hope everything works out in the end for you and your family. I tried to get in touch with you through FB and sent out a friend request but have not heard a reply from you.
It's been quite a while since I posted here & took some digging around to find the user name & password I had.
My news has not been good. My dear husband passed away the end of May.
Jeannie if you want to reach meet you can accept my friend invite but if not I will understand
You take care during these trying times for you.

mrs j

[tic chick]

hey everyone !

mrsj, i was so sorry to hear about your hubby and i'm in contact with you on facebook now, as you know.

i haven't seen my mom in almost a month. i can't get a ride there. my son takes me shopping on saturdays and works during the week. my motorcycle daughter lives about 40 minutes away. she comes here every 3 weeks or so. next time she's here, i'll ask her to take me, but lately she's just been down here for other reasons. another person was taking me once a week, but he was driving me crazy with his depression and then he started honing in on my faults and that's when i said, no, my peace is more important to me and i'll just have to find another way.

i talked to the hospice nurse last friday. she called me just to tell me how my mom was doing. mom has lost 10 pounds the past month. i was talking to the hospice nurse and i asked if maybe my mom could be moved to her wheelchair with a lift and taken to the sunroom every so often. maybe they could even just move her bed and put her there for a change of scenery. the nurse said my mom was getting more agitated, no doubt cause she is stuck in one room all this time.

i have been bummed lately, even working in the garden. i fear my friends think i am going slightly crazy trying to find a reason why this is happening. one friend just told me there is no deep reason why some things happen to some people. chit happens. i dunno. i have to get in my good place and just start accepting this again. when i start getting all intellectual or psychological about it is when i run into problems.

i don't know what more to say. i am trying to find and keep my peace. it is harder these days.

thank you for sharing and caring and still walking with me ,
jeannie

[Jo6]

Oh little sister, how I wish I could be there to support you and don't forget I have soft shoulders!! They are shrinking these days, but I choose to be there in spirit if not in body. I will be back in touch soon. No energy, plenty of support, but I intend to continue up word and be here for my extended family.

I have nurse at least 3 times a week, then therapy, never a break there with Beth breathing down my back. lol
I call her Lucy and she calls me Ethel!! these people come to my house because they know I can not be running all over right now.

Jeannie, I have been observing a lot of stuff in the last 2 yrs. and everything you have stated and more, You are right on the nose of an ugly situation concerning NH's and hospitals!! It scares the daylights out of me to find myself in the ER, once again. We will talk some more, but you take care of Jeannie FIRST!!

So many loved ones and so many heartbreaking lives@@@@@@@@@@@@

Please know we love you and we ARE sharing this long good bye. the burden gets more than we can bear at times. When it's so heavy just lay that pretty little head on my shoulder and allow me to carry it awhile.

time to take a break. I love you, Julia s

[tic chick]

hey everyone !

i went to the nh to see my mom last wednesday. i asked my daughter to take me and she said she would, since she didn't have anything planned.

we got there about 1230pm and my mom was sleeping. i shook her foot. no response. i shook it a little harder. no response. i went up to her face and i'm stroking her cheek, which is very cool, and calling her by her first name, like the staff does. no response. and i haven't see her breathe in the minute it took to do this.

i calmly wondered if she had died. and then i heard her breathe. i said to my daughter, "i thought grandma had died". my daughter said she had seen her breathe before i did.

and somehow the fact that i might have walked in the room and found my mom dead didn't bother me. when i am alone and think about her, i wonder how one person can go through this kind of suffering. it almost drives me crazy sometimes.

i am working in my front yard like a madwoman the past 2 weeks. i am finally getting an idea as to what i want to do and i dug out 3 bushes one day and transplanted them into the back yard. i have been constantly pulling weeds in the front all summer because i don't want to use that poisonous weed killer. you can't plant anything in the ground for years after using that.

my youngest daughter, the one who drives me to see my mom, is having surgery on august 5th. she found a doctor's group that she liked down where she lives. she went in for a check-up in june and told the primary care doctor our family history of thyroid disease. so that doctor sent her to an endocrinologist and he did an ultrasound of her thyroid after her blood work came back positive for hashimoto's thyroiditis, which is what i had and what my other son and daughter also have. we were all diagnosed when we were around age 30. my daughter will be 29 in october. so the ultrasound showed a very small nodule in her thyroid, which isn't uncommon in people with or without thyroid disease. so they did a needle aspiration of the nodule and they couldn't say for sure if it was benign or cancerous (yeah, i don't understand that either). so, she's having surgery and getting the half of her thyroid removed where the nodule is. they'll do a biopsy while she's in surgery and if it's benign they'll leave the other half of the thyroid alone. if it's cancerous, they'll just take out the whole thyroid.

i read about these nodules. if you take 100 people and do an ultrasound of their thyroid, prolly 15 of them will have a nodule. they do this aspiration and send the samples out to california for some kind of genetic marker test if the needle aspiration can't tell whether the nodule is benign or cancerous. this genetic test costs $3500 and from what i read about it, it doesn't give a much better result than a plain biopsy. of course, no one wants to have a nodule in their thyroid and not know whether it's benign or cancerous, so most people have surgery, which i would too, of course. when my daughter and i went to see the surgeon, he said he did 3 thyroid removals the week before. so this is going to turn out to be one of those big surgical money makers for the doctors that specialize in thyroid surgery.

so of course, this is bothering me also. i don't want to go to sleep at night and i don't want to wake up in the morning. i have an appointment with my primary care doctor in a month. i don't want any more meds, i'm taking enough klonopin to kill a horse...just kidding, maybe a very small dog . i guess i just want him to know the state of my mental health. my physical health is good, but i don't usually feel so icky in the summer months. i dunno.

so, thanks for reading and letting me vent. i don't know if it'll do any good, i'll see how i feel in half an hour.

thank you for sharing and caring and walking with me,
jeannie

[Jo6]

hello Jeannie. It's been a long time since we talked. I'm so sorry things are so heart breaking concerning your Mom. It truly is a very long road. Every time we think this is the end, things start to look up, at least for a short time. That is part of the heart break. You begin to wonder how much more you can take. Every thing in your life starts going crazy and we begin to wonder about our sanity.

I think of you so much. It looks like things are looking up for me, but I'm afraid to get too excited before something comes along and knocks me down. I've not called you because I can hardly talk above a whisper much of the time. I have written you, but am afraid you haven't received the emails. My computer is crazy and I hate it, but at least I can get to BT!!

I hope things will go well with your daughter. Our kids grow up, but there are times they are our little kids again.
Please take care of yourself and don't burn out. I have lost too many LO's and don't won't to lose anymore!

Have you heard from Pati or Joy? I miss all my extended family. Well, Got to go to Cardio Dr. this afternoon. I trust he doesn't have any test or surgery up his sleave (?). I have learned to say NO!! the Home Health nurse came early this morning to get a urine sample. It's good they come out and do many things so I don't have to travel for an hour and a half (one way) Riding is hard on my back. Nothing new there.

I send my love to all that come here. It is a hard road to travel and I want to be here for you.

Jeannie, I send my love to you. Jan, you and Hank also. those that I haven't mentioned I send love to you too.

Julia s

[tic chick]

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to all the wonderful people here who have walked part or all of my journey with my mother and her six and a half year journey with alzheimer's disease, i want to thank you so much. you have been so kind, empathetic and supportive and i have been blessed to have you walking with me.

my mother's birthday was last tuesday, the 29th of july. i went to see her with my sister and the hospice nurse said she hadn't eaten since the previous saturday and had only a small amount of fluid that day. i saw her the next day and she had her mouth open and her eyes half shut, but she was tracking people. i saw her friday and she seemed to be doing the same thing. i got a call friday evening and the hospice nurse said my mom had become unresponsive. i wanted to go to the nh and spend the night with her, but the nurse thought she would make it through the night.

i arrived at the nh at 1130 the next morning (saturday, august 2). my mom's hands and feet were mottled purple, a sign of impending death. my brother came to visit at 215pm. i took a short walk at about 3pm to give my brother some time alone with mom. i came back 15 minutes later and my brother said my mom's breathing had changed. she breathed a couple more times in the next 10 minutes and then she just stopped breathing. it was very peaceful.

my brother was overwhelmed. i don't think he expected my mom to die while he was there. he left for home and i waited for the hospice nurse to come. a wonderful friend whose partner was my mom's roommate at one time, came by after visiting his partner and sat with me from 415pm until everything was over and then he drove me home. the hospice nurse came shortly after 430pm and called the police. my mom died in the michigan county where, years ago, jack kevorkian had been assisting people with committing suicide, so now there is a law that all deaths have to be seen by a policeman who checks off a list of questions making sure he is satisfied that there was nothing unnatural about the death. the policeman was polite and satisfied. he got a number from the medical examiner for my mother and then the hospice nurse was able to call the funeral home with the number. i waited for the funeral home people to come. i walked my mom's body to the hearse and then i went home.

although i wanted to bring my mom home so that she wouldn't die in the nursing home and die alone, i couldn't. my daughter is having surgery this coming tuesday and i couldn't have my mom at home and be with my daughter.

so, my mom died in the nursing home, BUT...
she didn't die alone, which was more important to me.

thank you all for caring and sharing and walking this journey with me,

jeannie

[joy]

Jeannie you have been a steadfast caring daughter for such a long time and through some of the worst things that can happen to a human being. You have done it graciously and without thought of yourself as well. I won't say I am sorry your mother passed on because I feel like she deserved to be in a better place and that there was not anything any human could do to help her. Her long lasting pain is over. And for you also. Now is time to gather yourself with some deep breaths and finish with your mothers last final trip. Then I pray you will go back home and putter around in your garden and house and get back into dancing lessons or anything that sounds like fun to you.

You truly did do all that was possible for a daughter to do. know that and take comfort in that fact. Big hugs for you Jeannie. for some reason I cannot find the hearts but just know you are in my thoughts and prayers. take care of yourself now jeannie

[dawnmn]

Jeannie, my thoughts and prayers are with you. You have done everything that you could do for your mom. I'm sorry that you didn't get to take your mom home but it sounds like she died peacefully. You were there for her though out this whole process and made her last years peaceful.

Like joy said finish the journey and move on and enjoy your gardens and dancing.

[Mal L]

Yes, it is important for one's last years to be peaceful.

[Jo6]

My dear Jeannie, I'm so sorry I wasn't with you at this sad time. I can't find the words that express how I feel for you, your sister ad brother. Especially for you.

Although she isn't suffering anymore it is still a great loss to you. When your every thought is with your LO there is such a void when they do pass on. Your Mom loved you and I think she did realize who you were even though she didn't call your name much toward the end.

I love you dearly and I will be in touch soon.

all my love, Julia s

[mrsjerome]

Jeannie
My condolences to you and your family. Your Mom is now with the Lord today
Her journey in this life is now over. Dementia is such a long lasting crippling disease
Now your mom is young again in the kingdom of heaven
As you know I lost my Dear Husband just the end of May. I dream of him as not how he
was at the end of life but as a young vibrant and healthy man.
I wrote you on FB a message & hope you get to play the song I posted
Never easy planning for a funeral, that is for sure.
Take Care of yourself and your own health
See you on FB where we can share our thoughts & pictures
Hugs
mrsj

[tic chick]

hey everyone !

thank you all for your condolences and kind words. i wouldn't have had the ability to carry on everyday if i hadn't had all of your support and love during the years my mom was ill and i believe you are all wonderful people !

julia, you said...

When your every thought is with your LO there is such a void when they do pass on.

that is how i have been feeling since mom died. empty. empty. i have cried several times. it helps. i don't know if i feel empty because i don't have to think about my mom everyday and wonder how she is and if the phone is going to ring and i will hear bad news about her or if i feel empty because i don't feel like she took care of me or acted like a mother towards me...which has been most of my life. when she got sick and then forgot who i was, of course she couldn't mother me, but she didn't before, so i see no difference from when she was alive to when she died. she was never there for me and now that same pattern continues with her death.

as i say, i am always honest here, because i want people who read this to know that all their feelings about their ill loved ones are honest and okay. my feelings are okay. i am grieving now and trying to process this all and the "void" quote struck a strong chord in my heart.

so, i will have to think more on this void. maybe talk to my therapist again. maybe figure it out for myself. i have felt for so long that i will always be wandering, searching for someone who will care for me and love me as a mother should. i don't think i will find that person, so i will have to become that person. and that's the whole lesson of learning to love and take care of yourself, with all your flaws and humanity.

thank you all for sharing and caring ,
jeannie