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Checking in after a break, Mom's still here, how much can she go through?
Bubbily
Posted: Sunday, January 4, 2015 8:35 PM
Joined: 7/29/2013
Posts: 473


HI all, 

I took a break for a few months.  I feel like I am in between forums, in the caregivers forums, it brings back too many memories of mom from the early stages and I feel bad posting about the end with so many that are in the beginning. 

Here, I haven't really lost my mom in body yet. 

She almost passed about a year ago, 3 days of not responding, no food or drink, fever, fluid in the lungs.  She's been on hospice for 1.5 years.  We opted not to do antibiotics, the pastor from hospice came, gave my brothers and I little books on grief.  Well, she recovered. 

At that time, I didn't think it possible for her to get worse. Well, it is. 

She cannot hold her head up, several limbs have contractures, she can no longer babble and only occasionally makes soft whisper sounds. She cannot smile. She is rarely responsive to my voice. Hospice had a special seat for her wheelchair because she slides down . 

Rarely can she squeeze my hand back when I hold it.  She gets skin problems. 

Although she is relatively slim, her inability to hold her head up has caused all the skin to create double chins, they keep her clean and dry, but still, infections develop periodically in the folds.  She has had a perrineal  rash for the last month.

 

She continues to have seizures and seizure activity, yes, I talk to the dr and hospice, review her meds etc. She is on Keppra to prevent them, but, the neurologist says that it is a function of her brain failing. ( I'm skipping the long explanation) And they will continue as parts of her brain become damaged due to tangles etc. Her scan of the brain is horrifying, so many blank areas.  She has episodes at least weekly and during november they were several times a week. 

 

Now she is started to slow down swallowing.  It's taking her longer to swallow the pureed foods.  She has lost a bit of weight over the last month. 

She sleeps most of the time.  We requested that they let her sleep through meals if she is comfortable, so they get her up once or twice a day.  

At a meeting with hospice a couple of weeks ago we requested to have her off Remeron, her antidepressant, that has a side effect of increasing appetite and caused her night time drowsiness.  My brothers and I do not want to do anything to stand in the way of her passing, but we want her as comfortable as possible. 

I had the great privelege of the hospice social worker telling me I have gone through the anticipatory grief stage--- yuh think?  

Her facility and hospice are wonderful.    I have no fault. 

She is 75, and has no other underlying health issues at all.  

She is just not there anymore and I hate to see her going through all of this.  She would hate it!  This is not dignified dying at all.   

So, I am not sure what information or advice I need, I 'd just like to hear from folks who are or were in the same spot.   It's hell watching all of this.   I'm trying to stay on top of my work and home( I'm a teacher)   but it is not always easy. My heart or brain seems to always be somewhere else than my body is! 

Take care all and thank you for listening to me . 


flgiirl
Posted: Sunday, January 4, 2015 11:09 PM
Joined: 12/7/2014
Posts: 4


While we are not in the same stage as you (not quite sure yet where we are) I read your story and my heart goes out to you.  It sounds you've done EVERYTHING you can. I pray for peace and comfort to you and your family.
chauchat
Posted: Monday, January 5, 2015 2:34 PM
Joined: 12/29/2014
Posts: 1


So sorry to hear about her travails. I keep reading that they don't feel as much discomfort as we do when we see their ailments; I'd like to believe that. Hope your mom's journey is smooth--it does sometimes seem excessive, doesn't it?
farawaydaughter
Posted: Monday, January 5, 2015 3:03 PM
Joined: 4/19/2012
Posts: 414


You are right it is hell. I agree it is a terrible way to die. My mom literally forgot how to swallow anything and died of starvation because her body couldn't remember to swallow, which to me is just so difficult to comprehend.

 

Watching someone we love suffer like this is excruciating. I am so sorry you and your mom are to this point.

 

I hope that she passes quickly which sounds terrible until one goes through this.

 

This is one of the toughest parts.


mercurii
Posted: Tuesday, January 6, 2015 12:18 PM
Joined: 10/15/2014
Posts: 2


I'm so sorry you are going through this.  It can really be heartbreaking to watch the depth of decline an Alzheimer's patient goes thru and yet still be living.

I took care of my mom for 10 years in our home and she passed away in August. She had many of the same symptoms you are observing here in your post.  Contractures, bed sores, rashes, inability to swallow, sleeping excessively, unable to sit up or hold her head up, weight loss, loss of speech.

After so many years, the person your loved one was is nearly completely gone and the grieving is already past. 

It's a very strange feeling when they pass and others around you don't understand why there are no tears.. the tears are spent and dried up over so many years of watching the horrible decline.

You've done everything right. You were there for her from beginning to end. She didn't walk the path alone.

After she passes you may be surprised at the anger and frustration you are left with, so please take care of yourself.  I was suddenly without mom and with time on my hands I hadn't had in 10 years.  She died, I live with Alzheimer's every day and the frustration of inadequate funding, apathy from people around you, inadequate support for caregivers.  I so badly don't want my children to live the way I did, or my mom did. 

Be good to yourself, Alzheimer's is a nightmare for everyone in the care stream.


Bubbily
Posted: Tuesday, January 6, 2015 8:03 PM
Joined: 7/29/2013
Posts: 473


Thank you, thank you all , I was just feeling so much frustration and sadness. 

Thank you for those wonderful words of support. 

Faraway and Mercurrii, I am so sorry for your losses, but I so much appreciate you sharing what you have gone through . In a way, I feel that yes, there will be an end to mom's condition others have been there. I know that sounds bad.  

Friends and colleagues ask how my mom is doing, my new word is stable. She's not fine, there aren't really traumatic events and I don't know what  else to say. 

No one who has not walked this journey can know what it means to be at end stage AD.  

Mercurri, I know what you mean when you say your life is alzheimers. 

Ihave to say that in the year since mom almost passed, I have begun taking baby steps to have things outside of mom's care. I've gone a few weekends away and taken time off from visiting. But, always in the back of my mind whenever my phone rings-- is it hospice?   My weekends are structored around mom's meal times when she is most likely to be awake so I can visit.  

 Although she doesn't live with me, I am there as much as possible. I have come to know and be fond of many of the staff who care for mom as well as other residents and their families.  Part of mom going means I lose those folks in my life as well. 

Tears-- in November coming home after watching her in the midst of seizures, that lasted well over 45 minutes, ( I was there a whole lot longer) I cried. I realized then that my tears weren't because I thought I would lose my mom, they were tears because she was still here. I felt horrible for the longest time, but talked to my brothers ,my Aunts, ( mom's sisters)  and met with hospice  , I feel a bit better. 

No one, dr or hospice can say how long mom has, they have said that because she has no other underlying health issues it could be a long while. 

I do and have done as much as I could to ease her journey, Iv'e walked step by step for well over 10 years.  

Her arms get cold, but putting on sweaters is hard because of the contractures, so I created a pattern to make out of fleece that goes over her head and covers her, it doesn't look like a bed jacket and keeps her warm , I made several in different colors and patterns.   

Just thank you , thank you, you all get it! It was a relief to me to read your responses, I feel good   God Bless you all. 


TessC
Posted: Thursday, January 8, 2015 12:05 AM
Joined: 4/1/2014
Posts: 5192


I can feel from your words that you love your mother dearly and she was well cared for during all of her days with this disease. My mother has lived with DH and I for 9 years and she is beginning to shows the signs of the final stages. I had not heard them said as honestly as you wrote, and for that I thank you. Even with your heartaches and troubles, you still help others. I can prepare myself if I know what is to come.

 

I hope your mother will soon be at peace. Please take care!


Bubbily
Posted: Monday, March 23, 2015 9:39 PM
Joined: 7/29/2013
Posts: 473


Tess, Thank you, sometimes I don't know if what I a sharing is a help or creates a further discomfort.
I have not been able to log on , email -passwords , whatever. anyway I am back.
Mom is still here.
She is now having episodes of loud sobbing and whatever screams she can manage. They are not constant, no physical issues of problems were determined, could be , as one nurse said, moments of lucidity. God, I hope not, how horrifying for mom, I have been a mess for two days hearing those soiunds.

Mulelady
Posted: Tuesday, March 24, 2015 10:21 AM
Joined: 7/21/2014
Posts: 1164


Bubbily,
I'm not sure I can be of any help, but I will tell you what I know. When my MIL was in the final stages of Alz at the NH, she got so that she simply hung in the chair. She was very tiny, but until near the end, had eaten well. She was on pureed foods and of course, had to be fed. As you say with your mom, she slept most of the time and mostly seemed peaceful. At the end, when she was like you mom, we requested that she have no medication except for pain. We also allowed any skin medications they were using for sores, etc. At meal time, they were somewhat force feeding her, so we told them to leave her alone at meal time if she wasn't awake and if she was and didn't seem interested in the food, to quit putting it in her mouth. One of the reasons we did this, was because she seemed to get belly aches. The doctor speculated that possibly her digestive system was trying to shut down and too much food was just causing discomfort. She did lose weight, but seems comfortable. She also had no underlying medical conditions. In fact, her heart was so strong they said it should belong to a 60 yo, she was 94.

This went on for about a month, one morning they called and said she had possibly had a stroke in the night, because she was not waking up. She did not have a drop of water or any food for 16 days, and she finally passed.
Her poor little body had clung to life for what seemed like forever. At first, they told us 7 to 10 days tops. We sat with her day and night for the first 8 days, then we played out. I felt like a "vulture" sitting there waiting for her to go. Every time she took a strange breath, I was sure it was the end.
She had been a very strong. proud woman and I felt so badly that she had been reduced to living (if you can call it that) as she was.
Her care was good, and everyone tried to make her life as rich as possible, but the damn disease would not allow her to have any dignity left.
I believe as someone else mentioned, that because of the extreme brain damage, they don't experience the suffering we see. I know that after they quit force feeding her, she was much happier and more comfortable and was not hungry. It seems the body kind of knows when it no longer wants or can handle food.
I truly hope this helps in some way. My heart goes out to you. Thankfully, when my dear Donald passed, he did it very quickly and before becoming totally consumed by the disease.
Be sure to tell you mom that is okay if she moves on. She may hear you and who knows, maybe she thinks you still need her.
I wish you the best. Leanne

Bubbily
Posted: Tuesday, March 24, 2015 10:27 PM
Joined: 7/29/2013
Posts: 473


Mule lady,
Thank , you have indeed helped. Your mil sounds a lot like my mom, though mom is 76. She has been in this state pretty much for 15 months. Different problems come and go, get treated, we adapt.
It is just so hard watching her linger on like this with no end in sight. And who knows what horrors await ??
She would so hate this, so strong and vital and always busy, in perfect health and shape.
I just needed to cry on line so to speak. I am getting tired of getting keyed up for these crises where they and we think she may go, then, stability for awhile, it is exhausting.
Hopsice is wonderful as is her care facility, so that is a blessing.
Thank you again for taking the time to reach out to me.

KML
Posted: Wednesday, March 25, 2015 12:17 PM
Joined: 11/30/2011
Posts: 2105


Bubbliy:

Don't worry about speaking about this, you have to talk to someone about it, because in so many ways, it's horrifying what our loved ones are going through and it is so hard to witness it and not feel like we can do much to help their suffering.

I felt always like I was screaming on the inside. I never felt at rest or peace. I felt so many things at the same time, sadness, grief, rage, anger, fear, horror, helplessness.

It is so hard to witness this and not be able to make it stop, to make them better, to give them comfort and happiness.

We want to do so much more, to scoop them up and take them to a place of peace and beauty and health again. What we do for them seems not much to make a difference. They may not recognize us, see us, hear us, we think.

But I have to believe that they feel us, they sense someone caring and loving them and not leaving them to face this alone.

I am so sorry that your mother is going through this, I'm sorry for all of our loved ones. I think it is the best thing for you to talk about this with people who understand, to keep it inside is asking too much of oneself, too much to carry alone. Hospice might be a good source for you to speak with as well, I believe they have counselors for family.

I pray for peace and comfort for your dear mom and for you. I would like to believe in angels, I would like to believe they will come and hold your mom softly in their arms and bring sweet comfort and will soothe her until she is ready to rest.


pmad37
Posted: Thursday, April 9, 2015 3:28 PM
Joined: 10/3/2012
Posts: 68


Bubbily, this is my first step into this category as I lost my father on 3/21. He was 75, diagnosed almost five years ago and nearly a year ago became incontinent and not long after, unable to stand. We moved him to long term care on 8/29/14. He was basically healthy, except that he could not do anything for himself. He lost words quickly and yet remained healthy. We knew the end was coming, but also knew that he could last for years. There just is no timetable with Alz. My brother and I would sit for more than an hour each night trying to get calories in him. On 3/15 he choked a bit while eating and I decided then that I would no longer try to get him to eat "real" food. the next few days he lived on ice cream, ensure type shakes and milk and developed a slight cough. On Thursday, 3/19 my brother commented that at some point we would come in and he would be gone. On Friday, 3/20 I could only get the tiniest amount of ice cream down him and he choked on it. As I left that night, he seemed fine and the nurses were putting him to bed like every other night. My phone rang at 5:30 Saturday morning and I was told he had a slight fever and his oxygen was dropping. He was placed on oxygen and I asked that all meds be withdrawn except comfort - I think he was already gone at that point...still breathing but non-responsive and only squeezed my hand twice. I told him to tell all the family in Heaven that I love them and that I will see them someday. At 7:30 am he was given a small dose of morphine for comfort, and was gone at 8:30. I had scheduled a Hospice evaluation for the following Monday.

While I have not been through what you have been through, we had our own Hell for the last few months. A cough here, a skin issue there, loss of appetite, a rally and then more of the same. It's exhausting - for nearly five years my world revolved around dad and his care (my mother walked away for a long time, went back, and walked away again). After he was placed, I left work at 4:30 almost every day, drove to feed him dinner and was there on weekends as well - I saw more of my brother than I have in 20 years. If hell needed to be raised at his facility, I did it. I was his biggest advocate for good care. I also befriended the many aids.

In the end, as he took his last breaths, I could honestly say I have no regrets about the time I spent with him. My husband never questioned a minute I spent with him and my world revolved around those visits - event when it meant that I only cooked 1-2 times a week because I was so exhausted.

Keep doing what you are doing, but also make sure to take care of you. I'm still exhausted, I'm still trying to figure out what my "normal" is and I'm still trying to figure out what happened between 7 pm on Friday night and 5:30 am on Saturday. I lay awake at night wondering, but I am also thankful to God that he had mercy