Alzheimer’s Parent anyone? - Page 2

[laoxinat]

Oh mamas, I am so sorry you are all dealing with this. I thought my mama's emphysema was a bummer. I am Buddhist monk studying to become a hospice chaplain. You all know the difficulties, but I want to assure you that your efforts to help your parents are precious and beautiful. So so many parents are simply abandoned to nursing homes, and there is never healing for their children, nor comfort for them. We teach our clients that much of their difficulty arises from their attachment to what was. We know that Altzheimer's disease is irreversible, and so we know it is useless to wish or hope for improvement. What we can do, though, is to be present with our parents and accept their current condition so we can move to solutions. This radical acceptance can be the beginning of much healing and peace for those caring for patients with dementia. If you can care for your parents with compassion and acceptance you will find strength you never knew you had. Peace to all of you beautiful mamas. You are very inspiring to me

[Shantimama]

Thanks for your post laoxinat. I would like to comment on the following comment you made -

So so many parents are simply abandoned to nursing homes, and there is never healing for their children, nor comfort for them.

Placement in a nursing home is not always abandonment. It is usually a painful decision and rarely made without great thought and suffering. Sometimes it is the most loving thing a family member can do. Alzheimer's manifests itself in many ways and there are times when a person with it is safest and most peaceful in a nursing home environment. The predictability of routine is comforting and can allow the person to be free from the anxiety and confusion that the unpredicatability of home life can bring. Safety from harm during wandering episodes is a huge issue when Alzheimer's is involved!

While it is beautiful and ideal when children can accept their parents as they are, not everyone is capable of that when it is needed. Some parents have been abusive, neglectful or cruel to their children over the years. Those wounds take time to heal, and adult children cannot heal them automatically just because their parent becomes ill. Many work on finding healing and peace, but it takes time. They may only be able to find that healing and see the beauty in their parents if there is a protective space between them - a nursing home can be that protective space for both of them. Asking an adult child who is an incest survivor to bathe the abusive parent or change his/her diaper might well be more than she/he can handle, putting both the parent and the adult child at risk emotionally - and perhaps physically.

There was a time when nursing homes were barren, stark places. That is not the case as much today - they are often beautiful, bright places where there is a loving, happy and caring atmosphere. My grandmother died in a nursing home that smelled like an old diaper pail and had people lined up in the halls in their wheelchairs. It was terrible. My mother lives in a nursing home that is sunny, clolourful, smells like a home. There is a daycare in the building so children's artwork is everywhere and you can often hear the children playing.

The healing and confort you describe can come even when a parent lives the last part of their life in a nursing home. Sometimes that healing is only possible because the circle of support for the ill person has widened and there are others who help care for the ill parent, leaving family members to live and love the best way they can.

It is wonderful when circumstances allow a family to care for a dying parent at home until the end, but not every family has the financial, emotional, physical, practical, and spiritual resourcess available to make that happen. Extending the circle of care to allow others in can be the most loving option to ensure that the vulnerable/ill person receives the best care possible - it is not an all or nothing situaiton.

[ShannonCC]

Just yesterday I blogged a long rant about what Shantimama just said so nicely

I haven't read this whole thread, just saw the topic pop up and it was relevant to me, so forgive me if I repeat what others have said.

Someone on MDC recommended the book Learning to Speak Alzheimer's. It completely changed everything for me. I've been following the suggestions in the book and my interactions with my Grandmother go much more smoothly now.

I also got a lot of help and support from The Alzheimer's Association Online Community. Some of them are living with their alzheimer's patient (parents, grandparents, spouses), some of them have made the decision to move them to homes (like we did). There's even a board for alzheimer's patients who are still in the early stages and want to talk to other people who have the disease. The board was particularly helpful in showing me that my Grandma was not unusual like some professionals (who knew nothing about alzheimer's) were trying to tell us. It was good to hear others having the same problems.

I'm sorry anyone has to deal with this. It really sucks. I hope it goes as well as it can for you.

[laoxinat]

Shantimama, yes, to all of what you said, yet, I feel you have read much into what words that I did not intend . I am of course speaking from the perspective of one who is charged with facilitating healing. But facilitating does not mean forcing. No one can force healing, yet, it can be found even in the worst of circumstances. I have seen miracles. It takes an internal revolution of spirit and of the ego to overcome all of the obstacles you very eloquently describe. And yes, I know that there are many wonderful nursing homes. My mama spent her last months in a wonderful and nurturing nursing home. It was truly a blessing. Nowhere am I or did I suggest that everyone could or should care for their parents at home. (At least not when I read my post ) But simply that acceptance of what is leads to peace, whereas fighting the inevitable decline leads to more pain. That is a tragedy on top of the pain that exists in many parent child relationships. I chose to forgive my mother's neglect and the abuse I experienced as a result because I instinctively knew that the energy of my anger and fear would hinder her finding peace in her next lifetime. Believe me, I know many people have suffered treatment they believe they can never forgive. Yet, I have seen these same people come to see that when they can move past these injustices and forgive, and even love their abusive parents, and have compassion for the causes that produced that abuse, they are able to let their parents go and have peace. My mission as a Buddhist monk is to help relieve suffering and to help the dying to be reborn in better circumstances. So while I agree that many do not find a way to this sort of resolution, I also know at the root of my being that it is possible, and beneficial not only to the dying, but to those left behind when they do. Our perspectives may differ largely because I am dealing with those whose deaths are imminent. At this last juncture, we have an opportunity to relieve suffering and to help prevent that karma from being played out lifetime after lifetime. Peace to you, mama. And please forgive me if my words caused you pain

[riversong]

Originally Posted by Shiloh

How long did it take from when you started noticing the slippage to when it became obvious to other people? People know she's tired, not as quick as she used to be etc...
http://64.233.167.104/search?q=cache...n&ct=clnk&cd=1

I guess it was about a year and a half. My mom and I went to New Mexico for a vacation together when she was 65. She seemed a little forgetful to me, but I was trying to push away the thought that this was the beginning of Alzheimer's. Looking back I can see that it was. At that time she could drive, fly on a plane by herself, really do everything that a normally functioning person can do. She just misplaced things often and forgot little details. Nothing major.

When dd was born a year and a half later, my mom was very nervous about driving a car in our area. It was unfamiliar to her, but if she were her old self, she would've just written down directions and been fine. She had to repeatedly ask which can was for garbage and which for recycling- for the entire month she was visiting. She made two quiches for dinner one night and it took her almost the entire day to do it. We had dinner around 8 or 9 at night. My dh will always remember the quiche thing as the obvious beginning of her decline.

Shiloh, It sounds like your mom's progress is slower than mine. Maybe her problems are due to the strokes and not Alzheimer's. Not that that makes things any easier, though. Her not being worried about not being able to speak for half an hour may be because of a physical change in her brain. I've read about some brain conditions that are very concerning to others, but the person affected seems blissfully unconcerned because of the part of the brain that was damaged was connected to worry. I'm no expert. I just found that interesting because of what I had recently read.

I'm going to write more later about acceptance and nursing homes because some posts on here have been very interesting and inspiring for me.

[Bookmama]

I absolutely could not read this thread and not reply.

My father died in July, seven months ago. He died of a brain tumor. For two years before his diagnosis, we were convinced it was early onset alzheimers, because the symtptoms were all the same.

He was only 56 when he died. We live next door to my parents--well, to my mom now--and so I was able to help her nurse him through his final years while his memory and ability to care for himself slipped away. Watching your parent change into someone completely unrecognizable is unbearable. It's so hard. I feel for all of you.

The hardest part for me now is that I feel like I can't grieve normally for him. I am grieving my loving father who died four years before he actually "died."

[GenB]

Both my parents are in different types of nursing homes and I must say that they receive wonderful, loving care. We are extremely lucky with that. My father is very hard to deal with and we have just been told my mother has what would appear to be Alzheimers. I am moving her this week to the facility he is in and am looking forward to having her around these "angels" that have cared so well for my dad. My parents live an hour away from us and refuse to move over here. Mom couldn't care for dad at home and then she developed cancer and will lose her left arm this month which will necessitate her living somewhere that she gets a greater level of care.

Moving them into our already tight home was not an option and putting them in nursing homes was the hardest thing I've ever done but its turned out to be a very positive thing. They aren't isolated like they would be at home. They participate in activities, people check on them all the time and there is always something going on that keeps their minds active.

All this is to say that there are very good nursing homes out there and the time I spend with my parents is quality time because I am blessed to have help caring for them.

Mother was just put on Aracept and I will be anxious to see if it works. She is not capable of taking medicine herself but it will be administered to her each day after I move her to the new place. I am told in another thread I posted about her cancer that it was very beneficial for another mama's parent and dramatically improved his quality of life, so I have high hopes.

It is hard to get them to the doctor, though, and the only way we were able to address this issue was to lump it in during a visit for something else. I spoke to her doctor privately and, fortunately, he had seen her frequently for the cancer in her arm and had noticed a problem, too.

Many hugs to all of you struggling with the care of sick elderly parents. Its is one of the toughest things I've ever done and oddly, I also think might also be a wonderful gift. There have indeed been blessings along this very rocky road and I hope each of you going through this can find them in your own lives.

[riversong]

It's good to read positive stories about nursing homes. I know my mom will be in a nursing home someday, probably not too far in the future. It's something she worries about now and I try to reassure her that we're not trying to push her into a nursing home anytime soon. By the time she really needs to be in one, she's not really going to understand the situation anyway.

I hope that the next time my parents move it will be to an assisted living community. Right now my dad can do everything my mom needs help with. He does it in his own way- not the way I would do things all the time, but he does well enough for her. I'm actually impressed that he has risen to the occasion and started taking care of her after all the years in their marriage she took care of him.

I am working on accepting things the way they are. I spent a long time being disappointed in my mom for not taking better care of herself. I spent a long time getting frustrated with her for not remembering things or not understanding me. I feel like I'm past that now. I still feel very sad, but I need to focus on enjoying the time we still have with her. My kids can still have a relationship with her. I have my memories of how she used to be, but they are building their experiences with her right now. They may not remember it in the future, but they will see pictures and we will talk about the things they used to do with their Grammy. Most of all, I need to find the joy in being with her and my kids will feel it, too.

[alicia9178]

Hello...I read some of the posts and had to reply. I am 29 years old and helping my mom care for my father who is on Hospice from Alzheimer's. I feel so cheated...I am 29!!! Why is this happening??? My father is 20 years older then my mom and I occassionally find myself angry at her for marrying such an older man...but I know in my heart that love sees no numbers or colors for that matter.

We just moved back home to help care for him and literally within a week or two of getting back to Ohio from AZ he was on Hospice. He was in an Assited Living facility because he was not safe at home (was a horrible wanderer and even stole a car at one point ), but had in the beginning of March some sort of severe neurological event that in a matter of 24 hours made him non-ambulatory and unalbe to feed himself. The Assisted Living facility did not know (or care) how to properly care for him and by the time we got him home he was so dehydrated that he was on death's door, had a bedsore, and was in horrible shape. With hospice care he is comfortable at home and has gained some weight back and we are maintaining his comfort.

I am so sad. I have these beautiful children that just cannot even communicate with him anymore. My husband cares for him full-time and takes great care of him, but it is so hard to see someone bathe him, change his soiled bedding, and just to see him stare at me like I am a stranger. My sister and I are both pregnant right now and it is so sad to bring these children into the world and know that he will never know them.

I battle between feeling blessed to be a part of the end of his life, but still have feelings of resentment. I am a RN and feel at times I treat him like a patient, I feel detatched. I try to tell myself it is because I have already said my goodbyes, but I wonder if all of this will just an emotional protective measure I have for myself and one day I am going to crumble.

Alicia

[Shiloh]

How is everyone doing?
Just when I think my mom is fine again...she tells me she loves my new paint colours upstairs and when did I paint them....
they are 1-2 years old - she is here once a month...

[Susana]

alicia
I know what you are going through. My dad died from dehydration caused by dementia in March. The last weeks of his life were not the greatest and I can't forgive myself for not packing him up against the wishes of my mother and sisters and bringing him back home to die. His last week he was in hospice at the hospital in a beautiful room with wonderful people, so I try to comfort myself that way, but it is still so hard to watch someone you love so much fade away.
I know exactly where you are. I am so sorry.



I am walking in my dad's memory in our city's Memory Walk coming up really soon. I'm the only person on my team (thought I'd at least get my sisters to join, but they're weird) anyway, it's a great way to help in the fight against Alzheimers. Just thought I'd mention that here since this has given me a little peace, knowing I am doing something to help.

peace to all of us who have been touched by Alzheimers.....

[tug]

i also can't read this thread and not respond. my father died in march after a five year struggle with alz. i agree that it's very hard to grieve the parent that's been gone for years and the loss of connection is particularly painful. for my daddy to forget that he was my daddy and everything from my childhood was awful. the best comfort, though, was the amazing relationship that he had with my children. he lived with us for four and a half years and, therefore, most of my ds's life and all of my dd's life. and no matter what he forgot, he knew he loved them and that they loved him. the day before he died, when he knew nothing really, my daughter curled up by his feet on his bed for her nap.

my experience with the disease was that there were many, many things that i had to forgive myself for and learn to live with. i wasn't as nice as i would like to be, i wasn't as attentive, i got angry sometimes, i got impatient, i didn't deal with things well. i had to let go of all of that. i did my best in the circumstances at the time. we all do. good luck to all of you facing this. and always feel free to pm me if you would like any info on my struggle with the disease or just to vent.