Archive for August, 2015

Happy Today

Brad, Jim and Frances celebrating Jim's 53rd birthday. April 2015.

Brad, Jim and Frances celebrating Jim’s 53rd birthday. April 2015.

It sounds so easy. Take your loved one to a place that promises to watch them and care for them and allows you to go home and relax and focus on other things. How difficult is something so needed and so good?

We were given a 30 day respite through the VA this month. I was elated. The kids and I would be able to do the whole back to school routine, we would get to go to family camp for the fifth year, we would have time to get stuff done around the house (Ok, now you know I was really dreaming) and we would get to just breathe a little.

If you have never been to an assisted living type facility before, you have no clue what I am about to tell you, and it will most likely sound like something that should be shut down. But, if you have, you know what I am about to write.

You know the absolute guilt and heartache that come with the very first step through the doors. The smell of urine permeates through your whole body and clings to your clothes. The shock of seeing person after person almost in a comatose state either in a wheelchair or a bed. The horror of thinking how awful this place is and that you should be turning around and running back through the doors….yet you stay. You unpack clothes and try to seem happy about all of this. You see the dirt, the grime, the locks on everything, , the coded doors, the list of simple activities you can not believe that your husband would be happy to sit through….. It reminds you of a horror film but you are living it and you don’t leave. Well you do leave….alone.

You leave and cry and cry all the way home. The perfect sad song comes on the radio and you turn it up and cry even harder.

When your children go to visit the next day, you cringe again as you walk through the doors and see it all anew through their eyes. The moans from a bed as you pass, the loud daytime TV shows, the medicine cart, the food cart, the alarm going off when the door is opened incorrectly, the wandering, lost souls down each hallway. And they tell you what you already knew: Dad should not be here. This place is awful. We cannot leave him here! Yet, he remains and you return to the home you shared and the bed you no longer share. And you must kick into super awesome Mom mode. Think fast even though you agree with what they say.

“Was Daddy happy?”

“Yes.”

“Did he ask to come home?”

“No”

“Did he say he didn’t belong there?”

“No”

“Did he ask when he could leave or seem sad when we were leaving?”

“No”

“Well, we have to understand that Dad is content and likes where he is. Maybe he wouldn’t have a year ago or we wouldn’t want to stay there, but where he is right now mentally is what we have to think about. And he is fine. They are nice, they are looking out for him, he is laughing and we are getting a break.”

And there is the click. The change. The acceptance, the understanding that no 11 year old or 14 year old should have to fathom until they are old and grey themselves.

Jim is happy. He has a routine. He has activities. He has people to talk to.The staff watch out for him and know his signs.  He is satisfied in his own little world and is happy we can join him sometimes but has not asked once to come home. He has called to tell me he misses me but he doesn’t ask when he is leaving. He hugs me and I hear from the staff he talks about me all the time (and the dog and the kids) but he is contented to just be where he is. And where he is is a locked unit an hour away with patients much older and much further along. But he has progressed enough with the disease that none of this connects in his riddled brain any longer. And it is sad. It is sad to leave him. It is sad to know he accepts this new home (albeit temporary) and it is sad to witness his behaviors that mirror the other patients who don’t seem to acknowledge the world around them.

Did he really go into someone else’s room and take their photo album and put it in his room? Did he really get agitated because he was outside too long? Did he really not want to participate in a group activity? His changes cause our changes. His decline is our decline.

This short reprieve has been so, so wonderful for the kids and I on just about every level and in every aspect imaginable. The laughter and the carefree conversations make us acutely aware of how tremendously stressed we were without even realizing it. To acknowledge this is hard. It feels as if I am somehow betraying the love of my life. But when you are living your life, the best thing you can do is be honest about what is happening, what eases your burdens, what brings a smile to your face and what causes the stresses to disappear.

Life doesn’t get magically perfect because Jim is out of the house. I still worry a great deal about him, about finances, about the kids, about all of the things I worried about before but without having to keep a constant watch over him. Without the children fretting about him getting agitated or misplacing something they need or all of us keeping an eye and ear on guard for whatever is about to happen next.

None of this is easy. None of this has a good answer or a happy ending.

I spoke with my Dad tonight and we were discussing finances and planning Jim’s care (a typical conversation these days) and he asked me, “What about a year from now?”

And for the first time in my life I really understood myself in a clear and concise way. I told him ,”I can barely think about the rest of today or tomorrow. The most I am going to hope to even fathom thinking about and planning for would be six months from now. There is no way a full year would ever come into my radar.”

I am so grateful for this short break from the daily task of Jim’s care and I do wonder what we will do in a few  weeks. But I cannot dwell on it and ruin the time we have right now. I am good. The kids are good. Jim is good. And that is all I can ask for today.

posted by Karen in Early Signs of Alzheimer's,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (12)

What do YOU really think?

Screen Shot 2015-08-19 at 12.24.28 AMHow many drive the car they drive to impress others? Or wear certain clothes to attract attention? Or cut their hair just to entice a mate? Who in this world bases each action or decision on the reaction or perceived reaction from others?

And here I am, under an unimaginable amount of stress, grief and pressure to figure out what to do with Jim and unfortunately worrying about what others will think. Not just strangers, but people who mean the most to me…Frances and Brad. Their current thoughts on the subject and my worry about their thoughts years from now weigh heavily on my mind.

Home care? Institution? Just me and the kids?

I am inclined one way but then I envision having to live with that decision. So I start pulling toward the other solution. Not long after, I think of the original plan. It never, ever ends. Ultimately, my decision really won’t be my decision and I will probably laugh at all of the time and energy I have put into this. The decision will strictly be a financial one not a practical one. And that is really out of my hands.

I find myself justifying so many things with almost each conversation I have.

Earlier this week I chatted with a neighbor. I caught myself justifying. Not long after, I spoke with a casual friend who asked about Jim. Again, I was almost embarrassed as I heard myself repeating the same justifications.

Right now Jim is in a 30 day respite program we have been granted through the Veterans Administration. Wow! What a difference in our home. What a change in me and in the kids. Yet, I have felt the need to justify this welcome reprieve.

But to tell the story of relief is to tell of the burden and the stress and the unhappiness of having Jim at home. Who would ever want to acknowledge that life is better without their loved one with them? Certainly not me and not our kids. But it is what it is. And as I write this, my lungs almost collapse in shock and sadness. What kind of monster am I for feeling this way? How can I be a good wife, a good caregiver, a good person for thinking this, let alone saying it out loud? Me. I am. And I am tired of worrying what others think. Unless you have been taking care of a person with YOUNGER ONSET Alzheimer’s Disease WITH children at home, you are not allowed to pass judgment. You are not allowed to even think that you would do this differently. You really don’t know and could never comprehend what you would do unless you are actually living this very life with the exact same decisions and circumstances. Do I sound angry? I am not. Actually, right this very moment, I am happy. For the first time in a long time, I can breathe and I can focus on being a mom and nothing else (sort of) and it has been so nice. The kids and I have had many relaxing nights, fun days and times of reflective honesty. Yes, before Jim’s disease took hold, our family would have done these things with him and we would have been complete and whole. We are broken and the kids and I need to be able to move on. It is so difficult to try to move on while Jim is still with us. Yet, I don’t really want him to not be with us. Obviously it isn’t my choice whether he is here mentally. It is almost some kind of scientific wonder how he can be “here” physically, but he is no longer “here” mentally. Sometimes he is able to be part of a conversation or have a funny input or something relevant to what we are discussing, but let’s face it, he isn’t capable of being a contributor to decisions and barely can recall what was just discussed. The day to day change one way and then another is amazing if you stop long enough to digest it all. It does not please me to acknowledge these things. He is progressing. We are progressing. Life is hard. Life is complicated.

I often am forced to think back to conversations Jim and I had as he was in the process of getting diagnosed. We had many heart to hearts and he was always very adamant about the kids coming first. I know he had no clue the financial strain this would all have, but he was very clear on what he expected from me: taking care of Frances and Brad.

At this point, I just want to be able to be a Mom. Being a friend, a worker, a neighbor, a wife…all pale. I don’t have it in me to do all of the above as usual. I can only focus on a single point at any given time. Right now it is taking care of Frances and Brad as best I can under these circumstances. Then it is working on care for Jim. Wow. The paperwork and stress is indescribable.

I see Jim. He is happy in the respite. He is getting attention and has activities. He doesn’t have a lot of commotion. He hasn’t asked to come home. He hasn’t said he doesn’t belong there. Bittersweet. I am happy he is happy but his contentedness is a reminder of how far along he has progressed with this disease and it makes me so very sad.

Every time I see someone and tell them about Jim being in respite and trying to decide what is best for him, I find myself trying to justify and explain and to make sure they understand. Really? Why should I care? None of them are going through this. So do I really need to explain myself and what I feel is best for our children? Isn’t it apparent that everything I do is to make sure the kids are ok? Don’t they know that Jim and I had this conversation many moons ago and it is also his wish to put the kids first? Isn’t it obvious?

No, no. I feel the constant need to justify and explain to people who could not possibly comprehend the decisions and the magnitude of those decisions on the future of our family.

Yet, with all of my resolve to be strong and stick to my decisions from so long ago in dark, intimate times with Jim, leaving his care to someone else causes great stress and guilt. How could I ever be without him willingly? What kind of selfish heathen am I? How can I leave him to the trust of others to make sure he is clean and brushes his teeth and puts on clean clothes and stays active? Do they watch to make sure he doesn’t take the tooth brush and tries to clean the sink? Are they making sure he is washing his hair? Do they check to see if he is washing everything correctly?

The torture I feel is immeasurable. There will come a day that I will sit by myself and reflect, gazing at a beautiful scene and wonder how I did all I have done. But in the meantime, I struggle to find a foothold on what the correct choice is.  I struggle because I wonder how it will be for me and the kids or because of what others will think? Or because I will lose everything financially? Do I need a retirement? Do I need savings? Isn’t it better for me to have a stable, happy home for my children? But, isn’t it better for them to participate in the care of their father? Won’t that just grow character for them?  What if he gets violent again? Won’t it be my fault since I knew this was a possibility? Love hurts and love cuts to the very core.

Frances and Brad rock jumping at Belle Isle VA. August 2015

Frances and Brad rock jumping at Belle Isle VA. August 2015

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (18)

A world without Jim?

 

Visiting Monticello,  July 2015.

Visiting Monticello,
July 2015.

Please, please, make all of this go away. The pain. The worry. The decisions. The agony of watching Jim slide away as we try to cling to him. As he tries to cling to himself.

It hurts. So bad. And I can’t stop it. From hurting me, him or the kids. The kids. As a parent, all I ever want to do is protect them and keep them from hurting but this hideous disease blocks me from protecting them. It is taking their father from them and they are front row witnesses. All I can do is stand helplessly by as their pain grows, his death grows closer and I frantically work at picking up pieces as they fall faster and faster until I can no longer keep up. They see me struggling to find a solution. They watch as he tries to speak and they can barely manage to put together his mumbles into a clear thought. They help him with so many daily activities during the day they can’t ignore his plight. They are entrenched, as we all are. I feel as if I am failing them while I am failing him. I can’t help him. Can I help them?

I see him look to me for help, I see him struggle to speak, to get dressed, to brush his teeth, to bathe and shave, to help around the house…..he deserves so much more, so much better. How dare this happen to such a wonderful person? How dare I fail him? Fail the kids? Fail myself?

I thought the grieving process would get easier but the truth is the grieving process is only subliminal for a while and then it re-emerges stronger than ever. Just when I think I have a handle on letting him go and moving on, becoming a single parent, making all of the decisions, being Mom and Dad, figuring out finances and facing my loneliness head-on and accepting this fate….I look at him, see is frailness, his desire to stay with his children enabling him to watch them grow up, his failure to manage the most simplest task and the disappointment on his face….what am I doing wrong? What can I change? What can I stop and divert?

The world keeps spinning around us. But my world has stopped. Friends have disappeared. But in truth, not only do I understand, it is ok because he is constantly within ear shot and I can’t have a private conversation anyway. My world is selectively smaller these days and yes, it hurts, but there is nothing surprising going on. Friends have called and I have not answered because I can’t really talk. It would be a superficial conversation and I am not up for that. I am barely up for a real conversation, but putting on a front has never been my style and at this point it is impossible. I feel as if I am in a prison, trapped and controlled by something no one is regulating.

I now wake earlier to assist him in the mornings. One morning recently, I got him in the shower, helped him, got him drying off and went across the hall to wake Brad up. I spent a few precious moments caressing his sweet face and hair and just having a private morning moment with my son. When I went back to the bathroom, Jim had found a razor and “shaved”, cutting his chin and leaving large portions completely untouched. And that is where we are.

I constantly feel pulled between taking care of him correctly and taking care of the kids correctly. They both need me and deserve better. But it is impossible. I am torn at all times and I know the answer. While I fail them both, I fall further and further. Jim and I discussed this several years ago when he was first diagnosed. The kids come first. But it is harder to do now, when it is actually upon us. I want to do right by him but I want to be the parent our children need as they lose their father.

It is just so sad to watch him. He is a ghost of his former self. It doesn’t have anything to do with my recent burdens. It is seeing him struggle to try to do a simple task and not be able to and to know at one point he had so much pride and was capable. Not that it would be easier any other way….I am just hurting.

Yes, I am depressed. Friends have suggested medication. My therapist has recently started mentioning it as well. But I feel like I have a right to be depressed. I am in a depressing situation. And I need to feel the hurt and the pain before I can move on, if I ever am able to move on. Right now I can’t fathom ever moving on past this pain. But I know that being medicated is going to numb some of the pain and I need to try to hold off as long as possible. I am not opposed to it, I will probably eventually take something to help me, but for now, I want to try to stay off anything that will deter me from understanding the pain my children will feel, are feeling and have felt. It is ok for me to hurt, I don’t need something to ease that pain, but I have no doubt that at some point it will be time to get some assistance pulling myself out of this funk.

This is a most agonizing journey and I am hopeful that at the end of the road I will be a better person and somehow survive strong enough to continue to help others. I am amazed at the number of people coping with this same plight and hurting and struggling as we are. How is our country able to stand strong without helping the weakest? My friends, there is a fight brewing, and I hope you will all be with me. It isn’t about money and it isn’t about class or race. It is about doing the right thing and about common sense. It is hard to imagine this is an issue, but it is. It is also hard to imagine a world without Jim in it.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (23)