Death While Remaining Present posted by charlenereeves @ 12:38 AM October 08, 2008

charlenereeves — Wed, 08 Oct 2008 00:38:17 -0000

You sounded much like me before I reached overload and my mom decided to quit listening, eating, drinking, and living with our care (my sister and I). She was placed in the hospital and we soon realized she would do for others what she wouldn't do for us. There was a choice: to give up on her or try an Asssisted Living. Much to our dispair we placed her in one 3 years ago. And she has had a few problems but much less than drying up at home with us.

Death While Remaining Present posted by Anonymous @ 03:39 AM October 02, 2008

Anonymous — Thu, 02 Oct 2008 03:39:52 -0000

First ,i would like to say thank you for allowing to post here.

My mother dies every minute, everday in my eyes. All you can do after a while is just be happy and smile and cry in a different room, with no one around............ I personally will never place mom anywhere. She will stay here at home. The experiences I have had with out of the home care, is CRAP!
It is nice to know that I'm not the only one.
As an only child, we (most of us only children) have no one to ask for help.
Everyone says to ask family and friends for help.........
I do not have that option. (and No I don't have friends either... )
Now where do I go?

Death While Remaining Present posted by Lisa B @ 02:11 AM August 21, 2008

Lisa B — Thu, 21 Aug 2008 02:11:42 -0000

Wow, Charlene, huge ((hugs)) to you! I just read this entire thread from the beginning and you are certainly going through a very tough time. :( Like Missy said, please find some time for yourself whenever possible. I'll be keeping you in my thoughts.

Lisa

Death While Remaining Present posted by charlenereeves @ 08:25 AM August 20, 2008

charlenereeves — Wed, 20 Aug 2008 08:25:57 -0000

She is in the Nursing Home.

Death While Remaining Present posted by Missy @ 11:23 PM August 18, 2008

Missy — Mon, 18 Aug 2008 23:23:12 -0000

Have you looked into respite care in your area? I've heard of respite centers that can actually house your loved one over night or for a few days if you were going on vacation, for example. I know it may seem nearly impossible to have your mom stay in one, but if there is something like that available, consider it.

Death While Remaining Present posted by charlenereeves @ 09:29 PM August 18, 2008

charlenereeves — Mon, 18 Aug 2008 21:29:31 -0000

Thanks Missy. I do take off some time on Saturday's, but it's not like it's off it's like it is continually on. It's not my life anymore where I can take anytime off it's all about her which leaves me out frantic. I feel like I look like I am strung out on drugs I am so tried. I can't rest when I am off. What do you do?

Death While Remaining Present posted by Missy @ 02:56 AM August 18, 2008

Missy — Mon, 18 Aug 2008 02:56:27 -0000

Oh Charlene! I'm sending prayers your way that the hurricane does not cause you any problems. May it lose strength or veer off path or whatever.

I know this is easy advice to give and difficult to take, but you HAVE to find a way to take a little time for yourself. Seriously, even ten minutes at a time does a world of good. It's so important for every aspect of your health. And if you don't take of yourself and fall ill, how could you take care of your mom? You both need this. *hugs*

Death While Remaining Present posted by charlenereeves @ 12:15 AM August 18, 2008

charlenereeves — Mon, 18 Aug 2008 00:15:47 -0000

Hi everyone,I am running on a way past empty tank. I need to get away so bad. Well Fay is coming this way (I think) so I will get to go somewhere yet will take my mom with us. Some break! Mom is running us crazy with I want_________ I want________________________ I want_________. How much more can we take Lord. I don't know what having a life is anymore. I am not complaining for I am very greatful to have her, but the stress has gone through the roof. My right foot has a bone bruise supposedly getting rest with this boot Now I believe he will put on the cast he warned me about. How can you5 rest when sleep will not come. Please help me. My right knee (replacement) is so sore, my back hurts, what else can happen?

Death While Remaining Present posted by Collme @ 01:10 PM July 31, 2008

Collme — Thu, 31 Jul 2008 13:10:39 -0000

Hi Charlene, Towards the end of my mothers life it was unbearable. The nursing home as well as the hospital psychiatric section asked us to not visit too often because after we left they could not control her. She would bite and scratch and spit at the aides, nurses and other residents and scream until the other residents and their families complained. The only help I had was from my daughter in law who was able to visit, calm mom down and leave without a scene. Just recalling her crying and screaming when we left after visit about tore my heart out of my chest. As uncomfortable as it may sound to you, you are going to have to ask your neighbor to refrain from swooping in on you and make her realize that she is not respecting your privacy. Please don't feel that you are a bad person for speaking up to her. I'm sure she means well and has her sanity, hopefully, and you need to retain what little you have left, call it self-preservation. Again, even if you have to lock yourself in the bathroom and take a long bath or say you're not feeling well and ask her to leave so that you may lie down it is important that you are alone to grieve, think and try to get a handle on the situation. My bedroom was my sancutary I would lie there for hours crying, sleeping, yelling of the injustice to my mother who cared for all others and was abandoned in her time of need. No friend or relative came to care for her as she was for them and theirs. I would talk out loud to my late brother and beg him to help his mother either on this side or bring her to be with him. It's all she ever wanted was to die and be with her beloved son. Dad and I got so we hated going to see her because the sight of us upset her so much. She would swear at us and tell us she hated us.For some reason was the only words she could say. She was inaudible any other time except when she was angry. Charlene please don't feel that you are being selfish by taking time for yourself. You are a very important person, someone who sounds to be caring and loving, I beg that you don't lose you. If emailing me or this forum gives you support please continue. If you would like my personal email just let me know. Stand up and say I can not let this situation get the best of me. You need to remove yourself from your mother who has already gone and deal with the remains of her old life and the new person she has become but not as her daughter. Treat her with the respect you already give her and respond and not react to her personality. I'm here if you need me.

Death While Remaining Present posted by charlenereeves @ 12:17 AM July 31, 2008

charlenereeves — Thu, 31 Jul 2008 00:17:09 -0000

I can never thank you for your post. Your post reads just like I feel. My mom is not the person I knew and in the past 6 months has declined even more. I pray, even though I hate it, hoping she will go before she gets to the stage your mom got for I don't think I could ever stand to watch her go through much more. My sister goes out of town frequently, but as for me I never can afford it. When I come home my next door neighbor who is my mom's age acts like my apartment is hers. How others know when you are home by watching for your car etc. I never have any alone time unless I leave my home. I don't know anymore if I am going forward or backward. I pass myself going and coming.

Death While Remaining Present posted by Collme @ 05:39 PM July 29, 2008

Collme — Tue, 29 Jul 2008 17:39:40 -0000

Hi Charlene, I went through the same thing with my mother in 2004-2005. She had Parkinson's disease and it totally took every part of her life. She was as you say a body. I used to tell people that there was a stranger masquerading in my mothers suit. That person no way was the woman who was my best friend, protector and teacher the last 5 years of her life. She would say the most outrageous things, scream, attack my father who tried to be her caregiver but got burnt out himself. We had to give her up to the state finally to get her in to a nursing home because my father and I couldn't handle her physically or emotionally any longer. My heart broke every time I went to the nursing home. They are understaffed and at this particular home it was 2 aids for 50 people. Just about impossible. My mother ended up in the hospital at least once per month for falls, impacted bowels, outrageous behavior, screaming for hours on end. She was trapped in a body that no longer worked, couldn't walk, talk, feed herself, go to the bathroom etc but her mind was still there. How she would cry to try and get us to understand her and take her home. I went through a deep depression when I first realized she was "gone" and then another when she finally died "the second time". The morning we brought her to the nursing home before we left her home, I climbed in to bed with her and wrapped myself around her and held her and kissed her and hugged her and thanked her for being the greatest mom in the world. I told her I loved her and I knew she responded in kind in her own way. I am glad I did that because once she went in to the nursing home my life and hers became a nightmare. As careless and selfish as this sounds and even though I cried my heart out when I signed the papers to finally let her die, which she did of Pneumonia, I was relieved that her suffering would finally be over. Charlene I'm afraid there is no simple answer to your dilemma, I agree that humor can help you get through your day and if you are a person of faith then you should use any silent time to pray for yourself , your sister and your mother. You must find time to be away from both your mother and your sister. I had to get away from my father because it was like being fed double misery watching and listening to him cry over my mother his lifetime partner of 54 years. It becomes double mourning. You must treat yourself to one thing per week, a nap, a walk alone or with your God, a warm bath a few minutes with a hobby. My heart and soul are with you during this time. I don't know how I survived but I did and I am sure that you shall too.

Death While Remaining Present posted by charlenereeves @ 02:20 PM July 29, 2008

charlenereeves — Tue, 29 Jul 2008 14:20:09 -0000

I am totally exhausted. Need to get away. My sister gets away so I need it desperately. I am too tired to eat for I only want sleep. Mom is good but I am dragging. I must get away somehow somewhere. My life has shrunk to instinct level.

Death While Remaining Present posted by Missy @ 12:44 PM July 24, 2008

Missy — Thu, 24 Jul 2008 12:44:04 -0000

Glad to hear you and mom are both hanging in there, Charlene. Thanks for the update! And you're so smart to take time to laugh. It's like those old milk commercials - it does a body good!

Death While Remaining Present posted by charlenereeves @ 01:41 AM July 24, 2008

charlenereeves — Thu, 24 Jul 2008 01:41:59 -0000

Hello,

Mom is better this week. We make her appts. I had to read part of this at times when my mind could ascorb it. Sorry for the delay in posting. I am allowing her illness to dominate my life........I realized that today when reading a book on Time Managment. I will slow down and laugh with her for she is or was an awesome lady. I do miss her. When she is gone I want to remember the laughter we create in the present day so I guess we had better start.

Charlene

PS: Thanks for the reminder.

Death While Remaining Present posted by Anonymous @ 04:28 PM July 14, 2008

Anonymous — Mon, 14 Jul 2008 16:28:02 -0000

Charlene - I just discovered this blog and read your string with empathy. Although I have worked in Long Term Care management for over 25 years, now going through this with my mom is a whole different experience. But I would like to share a couple of thoughts. Please remember to laugh with your mom and sister - humor really does get everyone over the bad spots. You are right, some of the same things that happen to her in assisted living will happen to her even if she were in your home - and it is important to try to not let this stage in her disease process take over your life. I will offer some suggestions - but you may feel it is cruel advice. If you are able to visit daily - do so at a set time - it is usually much more effective and your mom will anticipate the visit and be more cooperative after a while. Yes, you can stop in at other times to monitor staff and how your mom is doing, but I would suggest a consistent pattern of visiting. You do not have to answer the phone when she calls 50 times - set a time frame for when you will answer, every 30 or 60 minutes - sometimes Mom may have forgotten she just called, and the voice mail message will be a reminder that the call had been made - if necessary and affordable, get a cell phone just for her calls and leave a message the speaks directly to her about when you will call her and how to get a staff member to come to her aid. Yes, she may lay on the floor again, but if you monitor the messages every 30 minutes or so... About the appointments. If you and your sister are not making the appointments, you should be and let the assisted living facility know - and let your mom know the day before - and write her a note about the appointment and why it is happening. If she chooses not to go - is that a bad thing? Hope these suggestions help - they helped my and I hadn't even considered them until a friend pointed them out - and they were things I had been telling family members of my nursing home residents for years! The feelings of uselessness and guilt for knowing I am supposed to be able to help her and just being so tired and she is still so frustrated and confused is awful -

Death While Remaining Present posted by charlenereeves @ 01:18 AM July 14, 2008

charlenereeves — Mon, 14 Jul 2008 01:18:28 -0000

Hi again, I have almost run out of energy and strength. My mom is so needy. I am trying to help my sister and keep her from dropping from exhaustion and mom is totally worn us both to a frazzel. She has had a staff member scream that she is a liar. We have been dealing with this, taking mom out to her appointments and while trying to change some of them she throws a fit about going to them all. We receive 50 phone calls an hour from her or so it seems while we try to work. Try is a huge leap from what is being accomplished. Work is getting behind and we have no life of our own anymore. Sometimes I wonder if we are going to fall before her. I know if this gets any more involved I will have to become her sitter. In doing this my life is no more. Fun and laughter are a thing of the past. Only drugery and exhaustion is the forcast for the future. Is there any life left in me; I wonder.

Death While Remaining Present posted by RevYarb @ 05:05 AM July 03, 2008

RevYarb — Thu, 03 Jul 2008 05:05:28 -0000

Charlene,

The more the staff see's your presence the better service your mom wil recieve.

Bless Your Spirit!

-RevYarb

Death While Remaining Present posted by charlenereeves @ 02:23 AM July 03, 2008

charlenereeves — Thu, 03 Jul 2008 02:23:57 -0000

There are only aides working in the unit. They come and go like flies. Mom' spendxing the night on the floor causedx her allot of pain andx causing me allot of emotional trauma. Being a nurse my body seemed to want to take her home or at least to take on the continuous mentally care until I realizedx she could hurt herself even if I was there 24 hours a day. That makes me stressed Andx makes me CRAZY!

Death While Remaining Present posted by Heather @ 04:16 PM June 24, 2008

Heather — Tue, 24 Jun 2008 16:16:24 -0000

Charlene.... there's the problem with most Assisted Living/Nursing Homes... they are soooooooo understaffed.... most of the employees are true caregivers but the work load prohibits them from doing their job like THEY would like to! Keep in mind your mom has dementia and it's possible she wasn't on the floor as long as she thinks... doesn't excuse her being on the floor...

For your peace of mind, you might look into a private sitter/agency to sit with your mom while she is there. Costly, yes... but if you can afford it it might be worth it.... Getting the proper care for our elderly is sooooooooo costly!!! When I mail out our bills (I work for an private pay agency) I sometimes look at them and go... wow!! But, then like I said, if you can afford it... it's worth the peace of mind!

The more you are around and raise cane about your mom's care the better care she probably will get too... you are in my thoughts... good luck and please keep us posted!!! H

Death While Remaining Present posted by charlenereeves @ 12:53 AM June 23, 2008

charlenereeves — Mon, 23 Jun 2008 00:53:37 -0000

Hi again. My mom is in Assisted Living andx I thought people were responsible who worked there but my mom spent the night on the floor. She slidx dxown andx I calledx when she was trying to get up by herself. Great care when you pay for an enorous bucks andx this is what you receive. I want to bring her home if she would only..... The aids give medication and supposedly take care of her.Oh please Lord help her.

Death While Remaining Present posted by charlenereeves @ 08:47 AM May 29, 2008

charlenereeves — Thu, 29 May 2008 08:47:32 -0000

Yes some better. It wans and wonders.

Charlene

Death While Remaining Present posted by RevYarb @ 02:19 PM May 28, 2008

RevYarb — Wed, 28 May 2008 14:19:16 -0000

Charlene,

How are things going now? Is it a little better this week?

Bless Your Spirit!

- RevYarb

Death While Remaining Present posted by charlenereeves @ 08:22 AM May 23, 2008

charlenereeves — Fri, 23 May 2008 08:22:25 -0000

Thank you both for your comments. I tried for months to correct my mom until one day I realized I was using all my energy fighting myself. My mom says she doesn't want me around on the holidays. Mother's day she refused to let me come over and take her out to lunch. I was deeply hurt for it felt like I wasn't good enough just like the many years that I was never good enough. Funny I know she isn't the same mom she use to be and I totally understand my mom is gone and when I am with her I realize that talking makes her nervous so when she does go out I don't talk to her and when she says an outrageous statement I just agree. It seems to take all the energy out. The pain of seeing her like this is deeply painful.

Death While Remaining Present posted by Missy @ 12:48 AM May 23, 2008

Missy — Fri, 23 May 2008 00:48:57 -0000

Hi Charlene,

I'm so sorry to hear that things are getting tough with your mom. Though I think the Reverend had some really great advice. It's the disease talking, not your mom. I know it has to be tough to separate the two, especially in the moment, but at the end of the day, know SHE isn't saying those things to you.

Have you sought out a support group in your area? That may really help. *hugs*

Death While Remaining Present posted by RevYarb @ 12:44 PM May 22, 2008

RevYarb — Thu, 22 May 2008 12:44:48 -0000

I sure do understand the hurt and mixed thoughts and feelings that you are experiencing now because I am going through the exact same thing right now. A dear friend had gone through the same disease with her mom and she forewarned me about the bitterness, mood swings, fighting (physical), and the profanity. I thought to myself I’ll accept all of the others except the profanity because my mom has never used foul language or said things that are untrue. Now she can give college courses on profanity, I don’t know where she learned these terms.

I can only offer to you is to hang in there the best you can and don’t take it personal because the person that was isn’t. She most likely doesn’t remember saying what she has said the very next day, so you honestly can’t hold her accountable for things that are said by her. That is not the mom that once nurtured and cared for you in your earlier years. As much as possible diffuse the matter or say nothing in response to her comments. I’ve found much comfort in just talking with family and friends and sometimes total strangers that are going through the same experiences with their loved ones. Above all stay prayerful; you are going to need some supernatural strength and guidance to assist you along this uncertain road.

Bless Your Spirit!

RevYarb

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