Not Sure Where To Post This

[kayc]

Last night I got an email from my brother...the dementia care facility has two units, the one for more far gone people has an opening and my siblings collectively decided my mom should take that spot until one is open at the unit for more independent social people in the more beginning stages. It breaks my heart that my mom has to go there, it is going to be so traumatic for her. She has lived in the home that her and daddy built for 59 years. She is 90 and has been so fiercely independent, but I know she can no longer take care of herself or make decisions. Oh how I wish it didn't have to come to this! Why can't God take her home and spare her this traumatic move and adjustment? My heart is breaking!

[kayc]

I am puzzled, I posted this yesterday but it says Sept. 4, I didn't even have this info Sept. 4. ???

I appreciate Mary's confirmation that it's the right thing to do to grab this unit as there aren't enough places. I was feeling yesterday like I should take her in but I know that's not feasible as I have no one to watch her when I'm at work. If George were here and on disability like they were saying he'd have to go on when he died, together we could have done it, but that's not the case right now. So as bad as I feel about her having to go into this unit, I know it needs done. That doesn't keep my heart from breaking though.

[enna]

Dear Kay,

Sometimes you come across something that just has to be shared. I guess this is my way of letting you know that you are not walking alone during your ache. enna

You’ll Never Walk Alone

R. Rogers/O. Hammerstein 11

When you walk through a storm

Hold your head up high

And don't be afraid of the dark

At the end of the storm

Is a golden sky

And the sweet silver song of the lark

Walk on through the wind

Walk on through the rain

Though your dreams be tossed and blown

Walk on walk on with hope in your heart

And you'll never walk alone

You'll never walk alone

When you walk through a storm

Hold your head up high

And don't be afraid of the dark

At the end of the storm

Is a golden sky

And the sweet silver song of the lark

Walk on through the wind

Walk on through the rain

Though your dreams be tossed and blown

Walk on walk on with hope in your heart

And you'll never walk alone

You'll never walk

You'll never walk

You'll never walk alone.

[Miss Ngu]

Hi Kay, I read your post, and it sounds like you are doing what needs to be done for you mom. After all you have been through with her, you are still standing by her, with sympathy and empathy, and for that, you will be more able to live with yourself and your decisions when she passes (in my opinion).

Stay strong...

(enna -- I love that song!

[mfh]

I am puzzled, I posted this yesterday but it says Sept. 4, I didn't even have this info Sept. 4. ???

I appreciate Mary's confirmation that it's the right thing to do to grab this unit as there aren't enough places. I was feeling yesterday like I should take her in but I know that's not feasible as I have no one to watch her when I'm at work. If George were here and on disability like they were saying he'd have to go on when he died, together we could have done it, but that's not the case right now. So as bad as I feel about her having to go into this unit, I know it needs done. That doesn't keep my heart from breaking though.

Kay, I am so sorry this is so difficult. I do understand. My mom had to be at a nursing home several times for rehab when she broke bones and my dad was in a nursing home for 2 years. It is so difficult to see them there as no matter how good the nursing home is, it is never good enough. I will keep you in my thoughts as you go through this process and get her situated. When will that be?

Mary

[kayc]

My brother just solicited our opinions as he is the conservator but I would think it'd this month, I can't see any reason why they'd drag their feet on it.

Interestingly enough, my scripture today was:

“Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.”

Isaiah 46:4

I love this! This was my verse today...perfect for countering the stress I've been feeling over my mom. God will sustain her through even this. I felt like I got it just when I needed to hear it.

Enna,

I love that song too! I can hear it in my head, it is one of my favorites.

[kayc]

Talked to my mom yesterday morning...she thinks the answering machine voice is an "administrator" who is trying to control her. She was very anxious and negative.

Took her out to dinner last night, she didn't bring up the administrator and it went better. Am realizing how skewed her reality is by her false perceptions, how sad and how frantic it must be for her. Am learning not to respond, just to try and redirect conversation if possible to make it more comfortable for her. She is aware she is going to be moved, we'll see how it goes when the time comes.

[MartyT]

Every person on this site is pulling for you in this situation with your mom, Kay. You are in my thoughts and prayers. ♥

[mfh]

Kay, I hope this move happens soon for everyone's sake. It is so difficult and your history with your mom certainly contributes to that. When my mom was about 97 (she was almost 100 when she died) she began to show signs of dementia accompanied by some paranoia. She went in and out of it. She would misplace her watch and think someone stole it. She was living across the hall from my brother at his monastery... Jim got so tired of looking for the watch, he bought 4 of them all alike so when she "lost" one, he would look and if he could not find it where she usually left them, he would get one from his suite and tell her he found it. When we cleaned her room out, we found the watches. She also began to hallucinate some seeing a man going through her drawers looking for her jewelry. It is difficult to see and watch.

I remember one night when Bill, at 3am, was standing at his walker telling me he could not move because he was up to his knees in water. We had many nights like that after the sun downing began...started about now (September) before his death and got worse.

You are in my thoughts and prayers as you go through this chapter. Please let us know how it is going. You are a strong and loyal woman. I know you will relax once she is settled. Peace to your heart, Mary

[Miss Ngu]

Hi Kay, I give you tons of credit, and admire your determination regarding the care of your mother. I also have to commend you for still going to a restaurant with your mom. My dad is becoming more and more of a stressor for me. I am getting more anxious about being in public with my dad, because his behavior is selfish and unpredictable (he is also loud, rude, very messy and spits food everywhere -- as his opinion NEEDS to be heard, whether he is chewing or not). Now that my mom has passed, my dad is hurdling through his life without his wonderful wife helping him to be tolerable. My dad is a complicated man, who is "perfect, just as he is" (according to him). It's like a kitten looks in a mirror and sees himself like a lion. You'd think this would be a good trait of self-confidence -- but -- it's not. He has always shown narcisitic tendencies, and has always overcompensated for his insecurities with his personal bravado. He changed the course of my life when I was 3-years-old by disliking the introverted and shy child that I was, and, by verbally abusing me, I changed to be someone who he preferred. Yes, all children tend to want to please their parents, but, this was different. Thankfully, as I got older, I realized that I did not need to please him, and that was enlightening and freeing to me. I love and adore him, I just don't really like him, and his ways.

Funny, as close as I was, and as much as I loved my parents, I never had an agreement with them, or myself, to keep them out of a nursing facility. I don't know if this makes me a bad person, but, maybe, since I have no children, I don't expect anyone to take care of me when I am older, as there is no one (if my husband passes before me). So, even though I know that I am a nurturing person, when the time comes, unless my sister has a different feeling, my dad will need to be in assisted living (if it gets to that).

Living a long life is great, if you are healthy. Dying a quick and unexpected death is so deeply shocking for the surviving loved ones. So -- what's the best way to leave this planet? Yes, helping my dearly departed pets cross the rainbow bridge seemed much more humane. This is all too confusing, and nothing I have any control over anyway -- these are just the thoughts that cross my mind.

My life feels like I am under a speeding train roaring over my head -- and I can't stop it. I just have to calm myself down, make any necessary changes I can, and then, adjust to it. I am keeping my strength, as best I can, along with you, and remembering your advice to take it day by day (or minute by minute).

Sending my deepest wishes for a smooth transition to a care facility for your mom -- and that you can have some more peace in your life.

[kayc]

Miss Ngu,

Yes it is freeing to grow up and realize we don't need their vote of approval. I understand your feeling love for your dad but not liking him. Sometimes there isn't much to like, and that's not our fault, it just is what it is. I have stopped trying to figure out if I love my mom or not...I don't need to put a label on whatever I feel for her, good or bad, it doesn't need boxed in, it just is what it is, and doesn't require definition. I try to show love and caring to her and that is all that matters. I cannot and never could depend on her to have loving responses, and cannot expect them, certainly when her future is so precarious. It is easier now that there is a disease to blame, but really, with all of her personality disorders, perhaps in a way there always was a disease to blame, I don't know. I'm glad God is the one who has to figure all this out. I know she believes in Him and as messed up as she is, even with her "faith", someday He'll make her right in a way she never has been, and that is comforting.

Mary,

I knew you had to know what it was like, what I am dealing with, even though your Bill was wonderful and merely had the Dementia, but not the underlying personality disorders to start with, which masked us realizing the extent of the Dementia sooner. In a way, your situation must have been harder to watch...we have always seen my mom's growing paranoia and delusions and histrionics, as well as her narcissism, whereas you had to see a wonderful loving man transformed in a haunting way by this debilitating illness. Yes, my mom too always says people are stealing from her. Someone broke in and stole her checkbook, her nail clippers, her whatever...common sense no longer exists, nor does reason, it is only what they see through their perception. I think how scary it must be for her, for anyone suffering through this, and I try to have patience and empathy for her.

Marty,

Thank you, I appreciate all of you. This is a grief of a different sort, similar to what I experienced as I watched my sweet MIL's digression through cancer and took care of her nearly the last three years of her life. It is anticipatory grief, and it goes on while they are yet still alive but facing what is and what is to come.

I will be very relieved when she is moved, and I'll let you know when that transpires.

[mfh]

Dear Kay,

I can only imagine how relieved you will feel when your mom is finally safe and in a good place. Your stress level will most likely drop many points. Yes, it is difficult to watch people we love go through dementia. Watching Bill lose some ability almost daily was beyond words. I still find myself reliving those days and weeping for him and for me. I know he was scared and there were times when he could say that and many times when he could not. Watching your mom go through all this (paranoia) is different but extremely difficult in other ways because of your history together. So many mixed feelings. A bit like my Dad's deterioration and death. Nothing is easy when it comes to dementia...each story has its own pain and you are living yours right now and we are all with you on this walk. Peace to your heart, Mary

[kayc]

As the deterioration is rapid, it is almost like a loss a day. This connection lost, this memory gone, this ability diminished. Yes, a hard journey, but we will be through it with her. I am committed to seeing her on a regular basis through it all, even if she ceases to know me or is hostile. This journey is not of one's choosing and they need our support.

[mfh]

Yes, Kay. I called it the disease of 10,000 good-byes...like watching a beautiful tree lose its leaves one by one by one by one. I know you will do right by your mom. It is who you are. Peace, Mary

[enna]

Dear Kay,

I know. We are with you. I marvel at your strength. She knows you are with her. Be still and let peace come to your heart. Anne

[kayc]

Last night I went to see my mom. I am appalled at how rapidly her mind is deteriorating. She's very independent, and so I afford her that independence in any way I can, to save her dignity. She's always been able to manage her own seat belt. Last night she couldn't figure it out and I had to help her with it. When I got there, she was in bed huddled up in blankets. I took her out to eat, thinking it'd do her good to get out. I'd called ahead to let her know I was coming (she doesn't like surprises), but they didn't pass on the message. Her phone still isn't working.

On the way home last night I couldn't remember if I'd hugged her. And I know it's because I'm not used to touch anymore. Next time I will have to make a conscious effort to hug her. She's so little and fragile...

[mfh]

Kay, I am so glad you got to your mom's last night. I am sorry about the phone. Maddening. When I hospitalized Bill 6 weeks before he died because he could no longer walk and I could not lift him at home and he would try to walk and fall. Our MD and I thought we might be able to clear the meds out of his system and start over and maybe get him walking again he could stay at home. He deteriorated almost overnight. At some level I knew deep down that would happen but I was in trauma and denial. In spite of your mom's deterioration, I believe (for what that is worth) you did the right thing. She is safe, she is not alone all day, she is getting proper care. She may even bounce back some once she adjusts...no one knows. You did ALL you could. You are amazing. Peace, Mary

[kayc]

She thought I was her youngest daughter (we look nothing alike and are nine years apart). I reminded her that I was born on a deer hunting trip...she didn't remember that. That has been a big story in our family, because I came so early and they didn't expect it...it's amazing to me that she doesn't remember. My sister wrote a list of our phone numbers for her and my mom wrote in "no contact" next to my phone number. I don't know why she keeps telling everyone I won't have contact with her. She told the doctor that months ago during her evaluation, yet I'd spoken to her on the phone right before she went in. It hurts, even though I know she can't help this, it just is what it is.

[mfh]

Dear Kay, I do know the hurt of not being recognized. I am so sorry that this adds to what is already a painful situation. There was a two day period when we tried a new med with Bill and he did not have a clue who I was. I can not describe the feeling...there are no words. I immediately suspected the med, got him off of it but it was day 2 when he came back and knew me. I hope this can change with your mom...she is so confused and i am so sorry. Peace to your heart, Mary

[hockeymom]

Abusive relationships are very hard. I haven't spoken to my birth father in well over ten years and don't forsee that changing. Ever. And I am completely at peace with my decision. I admire the strength that you ladies show and that you so willingly pass on to others. It is because of forums such as these that people can find an annonymous place to go to get some help, some insight, simply get things off their chest that eases the grief. Well done!

[kayc]

I went to see my mom last night...she gets sidetracked really easy, and is painstakingly slow because of it. She didn't know me, asked who I was. It was bad enough last week when she thought I was my sister, this felt really strange. I told her I just had my birthday, reminded her I was the one born on a deer hunting trip...she didn't remember that either. She does strange things...last night she was trying to shove blankets into her refrigerator. When I asked her why she said "oh, it's just an empty box Mick brought me..." I warned my sister that she is going downhill REALLY fast and to come with LOTS of patience. I took her to Subway, she loves that...she didn't recognize it and asked what it was. Her poor mind is disappearing in leaps and bounds. I used to think all of the wires were criss-crossed, now I think they're just disappearing. I know of nothing harder than this. It's like viewing death an inch at a time. The death of a person. Long before their body goes.

[mfh]

Oh, Kay....I do know that feeling. Except for two days, Bill always knew who I was but I was still watching him disappear like the leaves on my maple tree....death-an inch (leaf) at a time. He also went down hill fast in the hospital...the change was just too much for his brain to deal with. By the time I brought him home to die, he was semi comatose. I have not yet found peace with the staff who did not help me to know he was dying and who kept "trying" to what...save him? Only one MD, a woman, who admitted him and then saw him again the week before he died (she was a fill in) called me when she saw him (I was on my way down for the day) and when I arrived told me he was dying, had two weeks at the most and to call Hospice. Hospice should have been called months before and he should NEVER have gone to the hospital. I still struggle with that. He also did strange things.

I found it easier not to question the dementia patient because there is no answer to why. Easier for them and you. I just entered his world...including hallucinations...I remember one night he stood clinging to his walker because "I can't let go, Mary, the water is up to my knees." I weep thinking about it. I do know the pain of all of this. It wears one down and saddens one deeply. I am sorry she does not know you. It could change but no one knows. I am sorry. The good news (?) is that your mom is right where she needs to be and is safe and getting the care she needs but i am so sorry she is disappearing and does not know you.

Peace somehow...Mary

Peace, Mary

[kayc]

The good news (?) is that your mom is right where she needs to be and is safe and getting the care she needs

This is the important thing. I do think she knew when I told her who I was. She exclaimed "I should know you!" She felt bad that she didn't...I told her it was okay, it was just her brain (she knows it isn't working right) and nothing to apologize for, she can't help it. Sometimes she seems a little softer than she's been. Her mental illness has plagued her all of her life, unlike other Dementia patients. I take comfort in knowing it's almost over for her and someday she'll be made right...not the way she's had to exist here, but the way she should have been. I can't imagine how hard it must have been to be her all her life.

[kayc]

This is going to be a long hard disorder, I can tell that already. I went to see her last night...last week she knew me, this week she knew me part of the time, part of the time she thought I was my sister. She spent the entire time complaining about people. She is extremely paranoid and thinks everyone is against her, stealing from her, etc. She takes everything in a negative way. It's wearing. I realize that not all Dementia patients go through this, but she does...on a scale of 1-100 with 100 being bad, she's probably close to 100 for Paranoia. Still, I look at the sign out sheet and realize that a lot of the patients don't get to go anywhere, and out of six of us kids, it's mostly me and my brother taking her out. I know it's not fun, but it doesn't seem like we can just relinquish that responsibility. Are people really so caught up with having to have life be "fun" that they can't do what is the right thing to do, even if not enjoyable? My mom is sick. Even she knows that. (Although her perception is still that something is wrong with everyone else.)

Example: I have a quadriplegic sister with vocal chords that are extremely damaged. My mom says "Donna hasn't had anything to do with me in years!" Donna can't drive, can't walk, can't call her on the phone, and my mom has been mean to her for the last 45 years, what does she expect her to do? But alas, this is what the disease does to one's perception...reality doesn't enter in, nor does reason.

Ahh well, I made it through it for another week.

[mfh]

Oh, Kay, I do know how hard it is. I am sorry it is so painful and taxing and exhausting. I do agree with you...we live in a society that denies the pain in life including death and grief...hence the way people deal with grieving people. Sometimes we have to do the tough things in life. You are doing it. My mom, during her last year, became paranoid also...just in her room where she swore a man went into her dresser and took the jewelry she had so she started hiding it and then my one of us had to search high and low for it to prove it was there. It is good that she gets out with you and your brother. YOu are a good woman, loyal and compassionate. What goes around comes around....someone will reach out to you as you have to her.

Peace

mary