I have been so sad and down for the last few days. All I want to do is cry. I know this is natural to grieve the loss of our loved ones personality. I still have her sometimes but not the whole person. She can't even hold a phone correctly. I have to keep telling her to put the phone to her ear. Dad puts her on speaker phone but then she acts like she can't hear... I just feel so heartbroken. I am going to my parents house for five nights. See what I can do to help. Just be there for my Dad and to enjoy the time I have with Mom before she disappears...

Thanks MB, I will be staying five nights again this month and maybe for now on... with each visit...

quote:

I will hold on to every minute with her in my heart and mind.

I am so sorry that your being there is not possible, Christine, for BOTH of you! No one really reckons on how they will feel when they are IN the situation... not our loved ones and not us!

But despite WHERE she resides, you are onto the best attitude one can have: make the moments count! {{{HUGS}}}

Thank you Happy. It makes me sad when Mom tells me she wants me to stay. Last month she was asking me to take her to my house. She is not physically able to ever come into my house. I have lots of stairs. I will hold on to every minute with her in my heart and mind.

christine, i can so feel your sadness, the loss of the mom you knew and you're grieving already. it is normal to feel like crying all and it is ok. you are right to treasure the time you have. they may be very tough and sad and we all know it will get worse. like i said before, most of daisy's family deserted her because it is too hard, she is not the person they knew, she doesn't remember they were there, she doesn't recognize them, the excuses go on and on. only her sister and her one son get it. she is at the point of being slow physically and a five seond memory but she is content, humming a lot or in 'her world' but her one son comes faithfully and when he is here he reads chapters from little house on the prairie and talks with her about the simple sketches in the book. she sits next to him under his arm and just snuggles, patting his hand or stroking his arm and is happy as a clam. she doesn't always remember who is is but she knows he is someone special that she loves. when he leaves she often asks him not to go or to take her with him. it is hard on him but he still comes. he says that she is happy in the moment and these are simple memories of shared times that he will always have. he gets angry that the other sibs don't see this. god bless you and give you strength on your journey. give and take the love and memories when and where you can. you will be happy to have them and you will still have the memories of her more healthy times. it is all about love.

I've been coming to this forum since June... I always look to see who is on line and the number of guests. When I see large number of people viewing, my heart goes out to them. We all wish we didn't need to be here but life has dealt the cards. I am so grateful to have found this place to read how others are dealing with their love ones.
When I am up late at night and see the numbers of viewers I don't feel so alone. It's like I tell my family, "we are all in this together" and that's how I feel about everyone here. It makes the lonely nights a little better when the house is quiet and I can't sleep.
Your words of wisdom are golden, your humor the best, your open hearts priceless. You all get me ready to take on the next crisis... good night.

Hi Maria,
Thank you so much for your reply. Your Mom is so lucky to have you. It sounds like you have a good system going.
Ours is very erratic. The cg is patient with Mom but I know she is frustrated too. But, she tells us to just be patient. My younger sister had meals on wheels coming but both parents didn't like it. We girls would all cook extra meals and freeze them but the meals never got eaten. So just cook when we are there. We try to see where we can help Dad in doing things in an easier way and he is always greatful for our suggestion... The cg comes twice a day and basically is on call if Dad needs her. Mom did take a fall and he couldn't get her up so cg came ... she lives about 10 minutes away.
I could go on and on ...
Thanks so much for your support.
Christine

Hi Christine,

I just wanted to stop in to say that I think you guys did a really good job this weekend. It is difficult at first to discover what sorts of activities you and Mom will enjoy together. And it's also kind of like running an obstical course, for a while, as you are learning which "buttons" you should avoid pushing. With regard to our loved-one's emotions and abilities, likes and dislikes, it's as if someone has come in, in the middle of your life, and suddenly changed all of the "rules" that you've spent an entire lifetime learning. ...but it looks like you are a quick study

I don't know if this is applicable to your situation, but I had a very hard time with my mom and baths, too. I think it began during a time when she was delusional, and she thought her reflection in the mirror was another person. Regardless, I have cut down to insisting Mom have a full shower only twice a week (barring any major toileting accidents), and the rest of the week she gets only a sponge bath before dressing for the day. And I only wash her hair once a week (this was another sticking point)---her hair hardly gets dirty at all, but her scalp will begin to get flakey, etc., if we don't wash it at least weekly.

I am so happy for you that you and your sisters seem to care so much and work so well together. Priceless!

How is Dad doing? Is the caregiver able to help with light housework or meals? This must be so hard on him. I would hope that he will accept whatever help you gals may be able to send his way.

my best to you,
maria

I just returned from my parents. I was doing pretty good till today when I was getting ready to leave. Mom refused her shower from the care giver... went to try and coach my Mom into it but to no avail. Then she turned her anger on my Dad. I know she is venting on him... she acts nice to us kids till we try to get her to go to the bathroom etc.
I did spend time playing cards... she really didn't know what was going on but she seemed happy. I think she likes the Betta fish I got her. She named it Oscar. Looked at lots of pictures.
It was sad going to my nieces bridal shower without her. My sisters and I missed her company so much... we took back one of the centerpiece (beautiful pink roses), the favor, and got pictures developed to put in her album. She really loved everything. Also, my older sister and her daughters all came over to Mom's house to see her and let her know how much they missed her not being there at the shower.
Just upset when Mom wont let the care giver wash her more or take her to the bathroom. She does get her to do these things but not all the time. I told the care giver to just do what she can... I thought by now, two months, she would be use to the care giver but she isn't... very modest and I think she just hates the idea of someone telling her what to do. WHen will she just give in and accept her limitations?? When will my father really accept she can't do things for herself... I know this is retorical but... makes me mad and makes me cry.
It was great my younger sister was with me for three of my five days. Good team work and companion. We had each other to destress at night. I know my Dad really enjoys us there, just wish he would let us do more for him... he's a very proud man. He's a very strong person and relies on his faith in God to get him through the tough times. I know he misses his wife but keeps a stiff upper lip... though he did tear up when I left this morning because I was fighting back the tears.

Christine, I am glad you are going to visit. As much as spending time with your mom and helping out a little, you need to evaluate your dad's condition also - ie. is caregiving becoming too much for him; are there services he is not utilizing that would make things a little easier for him; is he giving your mom the care that she needs, etc. The most frustrating thing is one dementia sufferer caring for another! You have to convince the caregiver one that they need help and sometimes, that's a mighty tough row to hoe!

Good luck! Remember to squeeze them extra tight for all of us!

Thank you Happy and Moms_buddy-- your words mean so much to me and bring a calm to my soul. You help give me the strength to make my time with my Mom matter in so many ways.
I am so grateful to everyone who shares their lives with me...
You all are like angels to me!

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I find I can talk to her in short sentences and she can reply a little better but then gets lost in her response... she just makes up nonsense.

Like FD&H related, Christine, the "conversations" we have are not like "normal" conversations - thyey are more like narratives. The fewer responses they have to make, the better. You just tell stories - of what you've been doing, of what they used to do or the time we went on vacation to _____, etc. No response is needed. If their mind wanders, wander along with it.

Once, my sis called Mom in the hospital and was TRYING to have a conversation, so she asked Mom what she had eaten for dinner. She couldn't really remember (even though the tray was still there...), but there were some green beans left and a Microsoft commercial (with the rainbow colored butterfly logo) on the TV, so she told Sis that she had had green beans and butterflies! Now Sis was kinda stumped at what to say next... but I would have giggles and asked if the butterflies were crunchy... then started telling her about an article about FRIED SPIDERS I saw... You just flow with it and wander wherever things take you. Don't worry if it doesn't make a heckuva lotta sense - it is the attention, the semblance of communication that's meaningful. It is NOT the same as our previous relationship with them 'cause they can't keep up, but what's important is that they feel attended to and talked to and protected and loved. And sometimes along the way, you get a hearty belly laugh or a sweet moment. Even a vague little smile reminescent of their old selves is enough to buoy a sad, grieving daughter.

Don't beat yourself up about not understanding at first - it is SO HARD to get your mind around the fact that it isn't that they WON'T - it's that they CAN'T. At first, they seem mostly normal so why won't they try harder, why won't they fight? It's because they 'cant and we just don't realize or accept it yet.

One really does go through the stages of grief with these nasty diseases - denial, then anger & frustration, then depression and sadness, then acceptance. And trust me when I say, getting to the "acceptance" part doesn't feel all that great, it's more like surrendering to the reality. Doesn't mean the reality feels any better or goes down any easier, but one becomes able to accept things for what they are and surrender the fight to MAKE them different. Then you truly can try to drink up every little moment you get and express your love for this person who is no longer capable of caring for (or even remembering) themselves. Very bittersweet times.

christine, this is something that i want to share with you, don't know if it helps and sorry if it doesn't. this is what i witness every week. daisy's son comes every sunday to visit her. sometimes she' a little more with it than others but it doesn't matter. he shows her picures and of what he has been up to and just talks, she does't understand the places or the people but she enjoys the sound of his talking. she will sit under his arm and cuddle up while he reads a story to her, it is usually from the laura ingalls wilder series, little house on the prairie, and talk about the pictures. she is so content just being with him and it may not always be convenient but his sundays are visiting day. the other children don't bother. their attitde is 'she doesn't know i was there or she won't remember' it warms me to see her and her son together, she is so peaceful and content. you are one wise person. even if she doesn't remember, you will. and those warm hugs you share with her are not only for her, they are yours to remember. i would give anything if i could hold my mom or dad again. christine, i feel i always say the wrong thing but i mean well, i do care so much. long story short [too late for that] but my point is take whatever time you have with mom and make it special, make it your own. it is going to be so difficult and heartbreaking but OWN the memories!!you and your dad can share the memories, good and sad.

Hi Bobcat, I just viewed that beautiful film. Of course I cried my eyes out but it felt good. I will have my sisters and brother view it.
Thank you.

Thank you so much Happy and moms_buddy for your kind words and support. I'm sorry for all of us going through this ordeal. I can't tell you how much I appreciate you all. I wish I could hug each and everyone of you who have responded to my entrees. Mom_buddy, you are lucky you can talk to your Mom about her life. I don't think Mom would be able to concentrate long enough to stay with a story from her past. I find I can talk to her in short sentences and she can reply a little better but then gets lost in her response... she just makes up nonsense.
I feel bad that I got frustrated because I didn't think she was fighting hard enough to stimulate her mind and now I know she just can't... I miss her twinkle in her eye, her quick wit, her kind heart her love of nature. I can still hug her and tell her how much I love her. Tell her she is the best Mom in the world and how lucky I am to have her and to share the same birthday with... this is just so hard...never did I think this would happen and never did I know I would lose my mil to brain tumor either. Life can be sooooooo cruel and yet I know I am so blessed.

Dearest Ladies -- I so understand what you are going through right now. I lost my dad 2 years ago today but I lost my mother to the "other world of dementia" about 4 years ago. There are moments that she actually is "with us" but those moments are very few but certainly treasured. The rest of the time - - well -- you know how it goes. There are so many times I want to ask her something but there just isn't any way she can help.

Cristine, soon after I joined in here, MB posted this video of a parents wish, I don't know if you have stumbled across it on your own, and it doesnt change anything, but it helped me to do a little mental tuneup for myself. Mayme it will have some meaning for you right now too.
http://parentswish.com/

christine j: hi. how you doing. i know what you are saying. it is natural to grieve the loss of the mom you had always known and bless you for being wise enough to cherish the time you are able to share.it is so painful that a lot of times members of the family avoid their loved ones until it is too late. it is ok to be depressed and to cry. you still have your mom but you don't. who wouldn't feel depressed. i don't ever have the right words but i do know where you are.i have hoped that daisy's children would see it as you do, one does, the others are missing the whole point. cherish whatever time you are given. i'm so sorry for the journey you are taking. there will be a lot more tears to come and i am helpless to help. we all care. you are not alone.

It's tough, christine. I know how you feel - my mom was such a dynamic woman - so intelligent and quick-witted and knew everything in the universe, it seemed... I can't tell you that it's okay or you'll get used to it... What gave me some comfort was that even if Mom was/is losing her brain and memory, I still remember her. I remember her life and times and lots of stuff that she knew that she taught me. So I try to remind her of her whenever she needs... She loves to hear tales of her, just like a little kid does. I don't know if she actually remembers the things I recall to her, but she loves the stories and I think it gives her comfort to know that even if SHE doesn't remember, SOMEBODY does...
{{{HUGS}}}