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)

12 Responses to “Happy Today”

  1. Nancy Thompson says:

    I’m so glad you were able to get this. We were able to have the VA pay for my husband’s day care, if your husband is able to come home you might look into that before he does. I understand how badly you feel, truly, about this. Take time for yourself and kids and make future plans. You are doing a great job, it’s very difficult. Did you check with Social Security? The have a compassionate allowance for Early Onset.

  2. Kimberly a Smith says:

    I am so glad that you and the kids are getting a much needed and well deserved rest. I went through the same sadness of leaving my stepdad in a short term care facility, but he was only there a week(that’s all Medicare and hospice would allow). He was being cared for by hospice at home, along with my Mom and I. My mother in law on the other hand was financially able to afford assisted living, then a nursing home later on for my father in law, which was a blessing. Everyone’s situation is different and our current one is almost identical to yours. I found out my husband doesn’t qualify for veteran’s benefits, due to his age and non-service related disability. We do not have the resources to afford assisted living or any long term care facility, so here I am, wondering what I’m going to do, six months or a year from now. I remember four years ago, trying to roll my father in law over on his side while my Mother cleaned him and put a fresh diaper on him. Sure we had hospice, but they came in the mornings to bath him and change his sheets, then you are left until the next day trying to keep him clean and dry. You find out a person weighs a whole lot more when they are just laying there and are dead weight. It’s almost impossible to move them. I try not to think about it, but it makes me want to go to bed and curl up in a ball, trying to avoid the reality we are headed for in the not so distant future. The unbearable constant stress of caring for a completely helpless, bed bound adult takes it toll. My Mom was diagnosed with Frontotemporal dementia two years after my step dad passed away and she now lives with us. I believe the stress of caring for him, sped up the process of her current illness. Please try to enjoy your time with the kids and I pray that a door will open for you and a long term resolution for Jim will become available. Take care of yourself, hugs, k.

  3. Kathy Pekar says:

    You are doing the right thing by taking a break (before you break). I’m speaking from experience. I tried to care for my mother as long as I could in my own home, with my husband and children. You cannot do it all alone. You wil lose your sanity trying. I understand that being happy while Jim is away is a painful experience as weird as that sounds. Just give yourself a moment to breathe and be a person and a mother to your children. You can’t possibly have tomorrow figured out…figuring out today is the gift.

  4. Brigitte says:

    been through it with my
    Mom. Jim would want you to take this time off… Its hard to
    Leave them there but they are taken care off. Try to focus on “now”. You will survive, the kids will too. I know its hard but that’s the only road you can use for now..
    Thinking of you, i read you and understand every step you take… ❤️❤️❤️❤️hang in there!

  5. Lee Ann says:

    It shouldn’t smell like urine. That only means that when they change someone, they do not put the depends in a plastic bag and into a trash receptacle built to hold them without urine smell getting out. Someone is obviously putting depends in the trash in the room or bathroom. It doesn’t mean people are wet, it means there are depends laying around.

    If Jim is enjoying the activities and isn’t wanting to leave, it means its about the right time for this type of care. He is in his element. He isn’t struggling to be “normal”, he is in a place where he “fits in”.

    Its always a shock. They don’t do things like you would at home. Because at home, you have one to care for. In a facility they have 10 to 100 to care for. Focus on the kids. School is starting,

  6. Brenda says:

    I am grateful that you have this small period of time to regroup. I found your blog about 18 months ago when looking online for information to help deal with my father’s Lewy Body Dementia, accompanying his Parkinsons. My mother refused to place my father anywhere, and hid the full magnitude of his condition from us for a long time, dealing with it herself. My father became very dependent on my mother’s presence, and became terribly upset if she were to leave a room, or heaven forbid, go shopping. In January of 2014, after three years of my mother becoming more and more housebound, she finally agreed to hire an in-home caregiver for my father. Although he was initially against it, my father’s condition was significant enough that he did make friends with two caregivers so that my mother had daily assistance from breakfast to after dinner every day. Ultimately, my father did pass away in June of 2014. Unfortunately, my mother suffered a small stroke four months later, frightening us all. She has recovered well, but there are still deficits that she struggles with, including some speech problems, and right side weakness, especially when she is tired. My point in sharing this is that during my father’s illness, my mother insisted for years on doing everything herself to take care of him, until the last six months of his life, and she still had full care for him in the evening until the last two weeks. She neglected her own health terribly, which I believe contributed to her stroke.

    I have no answers for your current situation, and I know that you are doing the best you can for you and your family. I hope you are able to find solutions for your situation that allow you to care for yourself and your children, as well as fine solutions for Jim at this state of his life.

    Please know that I still look forward to your posts. I care, and think of you and your family often.

  7. Ann says:

    I’m so glad you’re getting some time to think, to spend time with the kids, to laugh… you so deserve that. Sending prayers that you can stay in the moment during this period of respite, Karen, for the kids and for yourself!

  8. Denise says:

    You definitely needed and deserved the break, and the fact that Jim is content and doing well should further ease the burden and any sense of guilt you have. You shouldn’t feel guilty for needing to take care of yourself and your kids, and you ARE taking care of Jim by leaving him in the hands of people experienced to deal with people just like him.
    I do agree with someone else above that was concerned about the urine smell. Unless you happened to walk right past someone who had just peed their pants, the home should NOT smell of urine! Especially an ALF which is funded and operated much differently than a skilled nursing facility that runs solely on government funding and Medicaid. (Not all of them smell like urine either, but smaller ones that are underfunded and understaffed might.) I would definitely say something, especially if you notice it on a regular basis, not just a one time or even occasional thing. That is NOT normal for any ALF!
    I wish you the best and I hope you and your family find a routine and a *new normal* that is acceptable to you all. xo

  9. Destress express says:

    PLEASE…..take me up on my open ended offer to give you some body care! Call as often as you can and let us take care of you so that you can get complete rest during your time away from Jim! You are in our thoughts often, Lynn graves

  10. Karen after I moved Joe I had to work on my self discipline and that was: visit with no expectations. I found that when I gave Joe a feeling of security, love, it came back to me ten-fold. Offering him candy, a kiss, a pat, a hug, or if I got no acknowledgement of who I was I sat and looked at him and marveled at this man that was my husband. I learned to absorb his lucid moments, the Alzheimer’s moments and accept this life we found ourselves enduring and by gosh looking at our joys. I never had to face what you are facing every day. I admire you and maybe my input will help you find your way,

  11. Jeri says:

    That’s such a great picture of the kids and Jim. Keep taking lots of pictures…..just because…….you’ll be so glad you did!!!!!

  12. joan says:

    Karen I think the real Jim would not want to be such a burden and would want you and the kids to have this time.I am on the same lonely road with my husband and I hope I have your fortitude when that day arrives.Thanks for sharing!

Place your comment

Please fill your data and comment below.
Name
Email
Website
Your comment