International Alzheimer`s Day!

Today is the international Alzheimer`s day, and I intend to attend some classes given by the Norwegian Red Cross. The process of moving my dad here is at a complete standstill and I am getting so frustrated.

2 weeks ago I got the news while on my way to work that the nurses where he lives are afraid something might happen to him and really find it urgent to get him into a home ASAP. However they don`t want to apply for a place there since that would give Oslo Kommune the perfect excuse to leave him where he is – and then I would never get my father here. It angers me so much to think about all the time I have lost and will never get back just because of some bureaocrate shuffling papers around. My dad can no longer talk (well…not much), can`t find the toilet and aimlessly wanders around his neighbourhood all day. He constantly lockes himself out of his appartement, or into his neighbours. The nurses tell me they have found him outside wearing just briefs and a t-shirt. They worry how he`s gonna make it when it get`s cold outside. They worry he`s not getting enough food (he`s always famished when they give him food). They worry he`s gonna get lost. And STILL Oslo kommune does nothing – not even return my calls when I`m trying to get a copy of all the documents or a new status on the application!!!

To give me some more time, the nurses has applied for my dad to be put in “daycare” so to speak…he get`s picked up at home (they have to wait with him till the taxi comes, or he`ll wander off) and spends the day with a lot of old people. But it seems he`s relaxing there and at least he`s warm and being fed! I am so grateful that he has those women around him…they are amazingly caring and I know they really look after him. Big thank`s to them!!!

This however, is just temporary fix, and I need to get him here.

Why is it so hard!?!?!?!

Still Alice…

I started reading the novel “Still Alice” the other day..but I confess I had to put it away after I got through half the book. It was just too hard to read aout it. I will definitively pick it up again after a while though and finish it, because I found the book itself well written!

Another reason this was hard for me, may be the decline we got from the government about moving my father here. They figured that he`ll be just fine where he is (translation: they don`t want to spend the money) and with the nurses looking after him. They didn`t even mention the fact that all of his relatives live here and that he has noone down there. Just cold and clean – let the nurses take care of him and keep him where he is.

Both me and my brother got so angry, and we have tried the desicion in for a second round. I`m intending to pester them like a mosquito in their bedroom!! But at the same time I can imagine many that don`t have the energy or capability or knowledge to do so. Imagine an elderly man or whoman trying to get their spouse in a home and getting shut down like this. They don`t stand a chance and it shouldn`t be like that! You shouldn`t have to bear the burden of fighting for everything on top of the almost unbearable burden it is to have a loved one with Alzheimer`s!!

02.01.2010

Isn`t it strange how anger can build up unless you unleash it? I am not the type of person that holds a grudge – I ususally say what I mean, and get it out of my system. But lately I have been forced (my my own hand I might add) to hold something in, and for the first time in my life I`ve experienced what it feels like to hate another person and have a seething anger inside you constantly.

It`s not a good feeling, but at the same time – hate can be the fuel that propells you forward and upwards. For me, it was like that – but it wasn`t until I got the opportunity to unleash it and get it all out served up on a silver platter that it really helped me.

So thank`s for serving it up. I`m well now.

01.14.2010

My dad actually called me today. I was on my way to work, when out of the blue  – my phone rang : caller id “DAD”. I can`t even remember the last time he called me. He didn`t really want anything else but to talk to me, and for the most part he sounded like he was 1 year ago. Interested, happy, my dad. I really hope the process to move him here goes through fairly quickly so I have the possibility to spend days like these taking a walk with him or just talking.

12.03.2009

I don`t understand why the goverment is soooo hesitant and reluctant to help out! We traveled to Kristiansand last Wednesday to meet with the nurses and my dads boss, and everyone was very impressed with what me& my brother had planned. I could tell they were afraid we would stick him in an old peoples home just to get him closer, but then they realized we had found a place that specializes in younger people with alzheimers/dementia and I could tell they really relaxed after that. We had a long talk about how he`s doing at work (not at all) and in everyday life (not so much) and all agreed that the nurses would contact the apropriate office to start the move. I was so releifed!

Two days later my phone rang..it was the nurse in charge of my dad. She told me the goverment in Kristiansand would not help us apply for this home because they do not want to cover the cost. So now I will get all the paperwork sent to me, and then I have to apply on behalf of my Dad…

I just don`t get it! They already spend money on taking care of him down there. Why on earth won`t they help us??? It seems insane to mee that I, a woman of 29, is left with the responsability to fight my way through the wilderness that is the Norvegian bureaucracy. I have no training and really no precondition to deal with this and it really scares me. What if he looses this place in that home because of me – if it takes  me too long? I know for a fact he won`t have a job to go back to after christmas, they just fear for his safety there too much lately. And then what? he`ll just hang around all day by himself without anything to treally do?? No…I will not let that happen!

I wish I had someone to discuss this with..someone who`d been through it and knew what to do and who to call!

healing moments..

I read this post at another blog, and I instantly thought “this is something I`ll have to remember and put to use!”

Just Say Yes—And

It’s the #1 rule in Improvisational Acting. You say, “Yes, and,” to everything you are offered. As actors cooperating to create a fictional reality on stage, you agree to agree, or nothing works.

If your fellow actor says to you, “Come for a ride on my new magic carpet!” your job is to ‘accept the gift’ and join in:

“Okay! This is a beautiful weave, what is it silk?”

or

“I’d love to! This magic carpet is way nicer than my cousin Aladdin’s. His is a ’91, it’s all frayed and worn, and it stalls out all the time. Where did you get it?”

or

“I’m in! Where should we go?”

And the conversation, the relationship, can continue.

If you say:

“No. I don’t want to.”

or

“No, that’s not a magic carpet. That’s an ordinary rug.”

If you deny or negate the reality your fellow actor has offered to you, then you will kill your opportunity to interact in a way that grows and builds and leads you somewhere. If you say No, the scene is dead.

I recently had the good fortune to participate in a Healing Moments workshop which applies this Improvisational Acting rule to communicating with people with Alzheimer’s. By saying Yes—and, by agreeing to the reality a person with Alzheimer’s is experiencing, we can meet them in the present moment and find opportunities to interact in ways that grow and build and lead somewhere.

Here is the exercise I remember most. I was asked to say a simple statement, something I believe to be true. I said, smiling, “I have the most beautiful 6-month old boy.”

The instructor, looking me straight in the eye and without smiling, said, “You do not have a 6-month old baby. Your kids are all grown. You don’t know what you’re talking about.”

My turn came around again.

“It’s a glorious, sunny day outside.”

“No, it’s not. It’s dark and cloudy, and it’s going to rain.”

Here’s what I noticed. Even though I knew this was just an exercise, I didn’t want to talk with this woman. I didn’t like being told I was wrong, I didn’t like the look on her face, and I didn’t like her tone of voice. In fact, I felt my emotions stirred by the interaction, like I was readying to argue or fight.

When the instructor said, “Yes—and,” I felt great. I liked her and wanted to say more.

“I have the most beautiful 6-month old boy.”

“He is gorgeous. Such intelligent eyes. You’re so lucky to have such a beautiful baby.”

“It’s a glorious, sunny day outside.”

“It is. I think the daffodils are in bloom now. Those are my favorite flowers.”

In an improvisational theatre scene, in a conversation with someone with Alzheimer’s, in life, we don’t know what is going to be said or done next. Instead of trying to control what happens or negate what happens, try being present with the person you’re with, go where they ask you to go, and see where it leads you together.

For more information about Healing Moments programs and workshops, go to www.HealingMoments.org

(Lisa Genova, Ph.D., author of Still Alice)

11.30.2009

It`s done. He didn`t get angry, he just cried. And it broke my heart.

11.23.2009

I have a tendency to expect too much from people around me.

My therapist tell me I put to much pressure on myself when it comes to being there and taking care of others. Which is probably true. I generally put too much pressure on myself . Guess there`s really nothing wrong with going out on a lim when caring for others, but when people don`t give me the “same” amount of attention and care back – that`s where the problem starts. It doesn`t mean they don`t care, I know that, but somewhere deep down inside me my automated thoughts register the “lack of interest” as me not being “worthy” or important to them.

How I came about to have those thoughts and reactions I have no clue…up until today I didn`t even know I had them (which is the whole thing with automated thoughts I guess). But the second I said it out loud  it became so clear. Why do I get upset and sad if I hear some of my friends have been to lunch without me knowing? It`s not like I haven`t met one or two of my friends and another has been “left out”!?! I know the people close to me care and try to help and support me. So why do I demand even more care and attention from them when they have given me plenty already? It`s not fair for me or them and it certainly don`t make me any happier. Sometimes I wonder where this need to be “seen” comes from and where the fear of not being good enough or worth loving developed from. I don`t have any memories of anything else but a happy childhood and I have never experienced rejection in that matter (that I know of) before…so why do I feel those things? And more importantly – how do I break the circle??

I guess focusing on how much the people in my life has done for me over the years is as good a start as anything. I have really discovered how supportive and wonderful my friends and closest family (my mother and brother) are this year. They have held me when I cried. They have listened to me when I needed to talk. They have brought me food when I couldn`t eat. They have kept me company when I couldn`t bear to be alone. They have sent me texts with supportive words when they knew I was down. They have made me laugh when it felt like I wouldn`t laugh again for a long time. They have told me off when I acted childish. They have given me time to work through my grief. They have told me I`m doing good even when I feel like I fail.

They say your friends are your chosen family. Well I agree with that. Most of my “real” family doesn`t even care what I have to deal with these days. They are more concerned with placing the blame or avoiding the elephant in the room (that would be my father). I have never understood how they can show so little interest in helping or supporting me & my brother in this very difficult task we have on our hands. Not once over the years since he got the diagnosis have they called me or asked how we are coping. It may be my high standards again, but wouldn`t you call a relative you`ve had a close relationship with and ask how they`re doing if you knew they were dealing with something like this? I know I would if the tables were turned and it was one of them being sick or dealing with this. But I guess what I`ve understood is that I can`t let that lack of support drain me of energy right now. I have to cut that part of my life out of the picture and focus on those that actually do show support.

So for my mom, my brother, my aunt & cousin, my wonderful friends. Thank you! I hope I get to be there for you the way you have been there for me someday!

About learning to trust…

I found this post in another caregivers blog, and it really hit me because this is exactly some of the things I worry about!

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Learning To Trust Yourself, Caregivers Have Good Hearts

October 28, 2009 <!–Steve–>

Caregiving can be full of doubts.

“Am I kind enough? Patient enough? What if I don’t make the right decision regarding medicine, surgery, or treatment for my loved one? Is this what Dad would have wanted? Is my mom–or dad–better off in a care home or here, with me? Alzheimer’s, cancer, Lewy Body, Parkinson’s, heart disease…how can a spouse, son, or daughter know what to do? Learning to trust your heart, and your gut is about the hardest thing to do.

You can’t know it all. You don’t have to know it all. It’s not even about knowing it all! Yes, as a caregiver you need to educate yourself, know what resources are available, ask for help, and as important as it is to be a savvy caregiver who knows what’s going on, it’s equally if not more important to trust your instincts.

When I say “you’ll figure it out,” it’s because you will. You’ll use all your senses, all your past experience, all your knowledge and it will come together just when you need it.

You know your spouse. You know your mom or dad. You know what they need. And most likely, that tiny alarm going off in your head is something you should listen to. We’re connected to those love on a spiritual and biological level. How many amazing stories have you heard about a family member who knew a loved one was in danger–or had something going on that the doctors were missing?

That’s why it’s essential that you stay healthy, you get the rest you need. Your senses are dulled when you’re past exhausted. Your loved one needs you to be their advocate and to do for them what no one else in the world can do. You listen, pick up clues, love wholeheartedly and pay attention when others can sadly consider it at times, “just a job.” Not to you. It’s family. A part of you.

Trust your good heart. Speak up when you feel a check. Your good heart will guide you.

(Carol O`Dell – http://alzheimerscaregiving.com/)

11.21.2009

It sort of feels like the calm before the storm. I´ve had a good day today in the company of a dear friend. But I can feel my nerves building up for this week and what I know I am about to do. What reaction will  we receive?  What if he gets really angry with us? I know this is the right thing to do, but I`m not sure if my dad still has the insight to understand that. I don`t think he does..which is somewhat ironic since that would be the proof that what we decided was right.And as much as I look forward to having him here near me, I also know that will almost be harder then him being far away. Because when I get to see him and visit him and talk to him on a weekly basis – the forgetting will only be so much clearer.

I read somewhere that having a loved one with Alzheimers is like loosing them a thousand times over. For each little thing they forget, for each step they take towards helplessness and then death you loose them again. And that is exactly what I feel like inside. I grieve for my father as I grieved for my grandmother when she passed away this spring. But the difference is that when my grandmother died it was the first time I lost someone I really loved. And it hurt. I could hardly breathe the first weeks, but then it got easier. And even though I still miss her so much and wish I could see her and talk to her again, the grieving process was finished (If that makes sense). I had closure because she was really gone. But when it comes to my dad, he is still here. I loose him more every day – but I don`t get closure and that is a kind of grief that I don`t wish upon my worst enemy. To helplessly stand by and watch one of your loved ones slowly dissapear, knowing that this will only have one ending. It`s like someone is ripping a piece of me away every time and I dread the day he will not remember my name or my face almost more then the day he really leaves us.