Elusive Answers

Screen Shot 2015-07-08 at 8.07.37 PM Because life is NEVER simple or easy when you are dealing with Alzheimer’s Disease I am at a crossroads with no uncomplicated, direct answer.

Jim rode last week from our home in Virginia to visit his family in Connecticut. He was excited (when he remembered he was going) and went willingly. My parents were already heading to Boston to take in some Red Sox games, so they offered to drop him off on the way and then pick him up on the way back. This gave me a week “off” and since Frances was heading to camp, it would also give me some one on one time with Brad. I envisioned getting the house clean, taking him to movies and the beach and being able to relax together.

Then a very dear friend (since 4th grade) asked if she could come visit. Perfect! Then another very dear friend won VIP tickets to a concert in Vegas and asked if I would like to be her date! I discussed this opportunity with some local friends who agreed to watch Brad and started making plans. I would get to do what everyone has been telling me over and over to do: take care of myself. I would see some old friends who refresh my spirit, I would get to bond with my son and I would even have some time for reading a good book and getting caught up on house stuff. Oh how life teases us.

This is where you insert a record playing in the background screeching to an ear splitting halt.

Jim had difficulty on the way while riding in the car at one point getting aggressive with my parents. Then he had several severe psychotic breaks during his first full day away, culminating with police, an ambulance ride to the ER and now a stay in a locked psychiatric unit. In Connecticut. While I am in Virginia. And he is confused. And scared. And alone. And a lost soul. I can only understand about every 3 words he says on the phone. He has had a couple of episodes since he was admitted but over all I believe he is doing much better.

How awful this disease can be. If there is anyone in this world who is NOT mean, angry or violent, it is Jim. Sometimes during the course of our marriage I have been miffed at him for his lack of aggressiveness. In a world around us urging us to show more and more belligerence he has been steadfast with his passiveness. Jim’s soul is as sweet and demur as it gets, yet he has now attacked others, become violent, paranoid, angry, torn a turn signal off a steering shaft and is now saddled with a “one on one” (a person who stays with him 24/7 to ensure he doesn’t hurt anyone). He hallucinated and said things completely untrue. He is another being in the body of the man I have known more than any other for the past 19 years. I am heartbroken just picturing him there, while I am here. Carrying on. Doing mundane things. Living life.

Dinner needs to be fixed. Jim is in the hospital. Laundry needs to be put away. Jim is in the hospital. Brad has track practice. Jim is alone and scared. The dog needs to be fed and walked. Jim needs help. Throughout my entire day, I am in a constant state of back and forth, reminding me my life may seem quiet and simple on the surface as I move from task to task, but the reality is Jim needs me. He is alone and scared and needs me to find an answer. An answer that eludes me no matter how many phone calls I make or how many conversations I have. The task at hand permeates into every cell of my being and each cell chooses to fight back; either struggling to believe there is help and an answer if I can only find it or shutting down and withdrawing. I am not sure yet which cells will win. There is a civil war currently taking place within me.

Now I sit making phone calls. Trying to find a place for him. There isn’t one. I can’t afford to place him in a memory care unit. Do I bring him back to our home? And risk a recurrence in front of the kids? I question each decision I am trying to make. Do I try to bring him home and let him get acclimated and see if he settles down? For how long will this last? If he gets out of control again, then what? I will say, “I should have known.” How would I live with myself if someone else got hurt or he got hurt? Yet, if he remains his usual self, I have taken him out of his home for no reason. I didn’t try hard enough. I didn’t make the right decision. I didn’t do the right thing.

What is the right thing when there are no guarantees or crystal balls? What is the right thing when you know the eventual answer, just not the timing?

Screen Shot 2015-07-08 at 8.02.33 PMMy heart and my whole body are heavy. Thinking right now at all is a burden. I am so tired mentally. I constantly feel as if I could lay down and slide into a deep sleep. I have a streaming thought non-stop:  Jim is in the hospital, Jim is in the hospital, Jim needs help, Jim is in the hospital, I have to figure out what to do. It doesn’t pause. I go about life with Brad as best I can, but I have that ticker tape on repeat in my mind.There is no simple answer for getting him home. We can’t fly him back. The doctor is strongly against us driving him back. (But that is, at this point, our only choice) Insurance will not cover a medical transport. What are our options? When I do eventually return him to Virginia, I have no place to put him. I am still searching. Of course the first question asked  when I inquire about assisted living is how I am going to pay. Then if I have qualified for Medicaid. (I haven’t applied yet, that is obviously on my to-do list) $6,000 a month for private pay until we get approved. Or I can take my chances and have him home with me and the kids. I can try to get in-home care, which I will again have to try to figure out how to cover. And still worry about the recurrence of his agitation.

There is no specific answer for our situation. I know others have gone through this, but unlike most medical situations, almost every single turn with Alzheimer’s Disease is arduous, overwhelming and with no specific plan. We are all on our own. There is no place to turn to for help. No one that will call around to find a bed for him. No one to help with the Medicaid paperwork. No one to tell me exactly what we should do at this very moment. He is to be released to my care and I am to bring him home, to wait to find out if the other shoe will fall. To possibly become an instantaneous news reel about the pitfalls of our system. To be spoken of in what if’s and should have’s. If he wasn’t diagnosed with Younger Onset Alzheimer’s Disease and he became violent like this, would I get help? What happens when someone shouldn’t be around their children for safety reasons? Is the only option jail?

Fortunately for me, I do have a wonderful support group of friends and now readers of this blog. I have people who may not be able to make decisions for me, but they let me know I am not alone. I have help with the kids, I have shoulders to cry on and people who would literally drop everything to help us. How lucky am I? I am so burdened with my responsibility yet I am touched and humbled and amazed at the outpouring of love for our family. It is a feeling of unbelievable gratitude and disbelief. Thank you one and all, from the very depths of my love and sincerity.

In the meantime, Jim sits, alone, passing his time coloring and staring into space. Wondering where he is and where his family is.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (26)

26 Responses to “Elusive Answers”

  1. zina stokes says:

    Hello I know your pain all too well. Although this is not my situation I have done assisted living out of my home and have done respite care as well. I have taken care of and had 12 individuals that have passed form this an other horrible diseases. I also lost my son in Oct. at 28 so I know what happens to a person when you grieve when you loose someone and exactly what is like to grieve the loss of someone still here. Your husband will get agressive even if it is not his normal nature. There is nothing predictable with this disease. You need to do what is best for all of you even him. He will have these episodes at home as they come more frequently once they begin. I think you are in a hard spot being that he is so young and you have young kids. But my son that I lost was one of 6 now I have 2 more as I adopted his kids. We dealt with his addiction , rehab, hospital stays, jail time , missing, chemical imbalances that made me think he was going to be permanently unstable…… Although these are not what you are going through completely it is the lack of YOU that will harm your kids. I do not mean that bably , I am telling you because my son was 10 and he needed me so bad and I was not there mentally and now at 15 I see he really needed me. Kids see things and they do not know how to communicate to us that they need us, they are children and do not realize it them selves. I am not sure that it would have changed anything after all Jason was my son too and he needed me. I pray for comfort and peace for you and that you may have rest. You husband will be eligible for an Auxiliary Grant that will pay for any expense over his SSI. I can help if you need to place him. It requires a physical and TB shot and a visit to a facility. My number is 757 903-2243 If you need any break at all call me and I will sit with him no matter his disposition. I am very talented with people with this diagnosis. God Bless!

  2. Chris says:

    First and foremost, EVERYONE must be safe. That is the number one priority. Right now, Jim hospitalized in another state. Not idea, but at least he is hospitalized. There are doctors there. There are medications there. He is not alone. He may not realize that you are missing, only that something is different. I hospitalized my husband twice before placing him in an assisted living center for Alzheimer’s residents. The toughest, yet best decision I made. He is safe and happy in his world. He’s not in our world as much as I’d like, but he is safe and happy. And our family is safe and happy. Our teenage son struggles with it a bit. Doesn’t visit his Dad as often as I would like, but it has to be HORRIBLE for a young son to watch his father disappear before his very eyes. So, I will pick up our son, drive to the ALC, pick up my husband and we will to go dinner, lunch or someplace neutral to spend a bit of time. We attend the special events at the ALC and then we kiss dad goodbye and drive home. It is not the childhood I had hoped for our son, but it is our life. And we are constantly reminding ourselves that if Dad is happy and safe, the we are happy and safe.
    They won’t keep him in the hospital forever, so, it’s time to make a plan so that everyone in the family is safe.
    Good luck. I’m praying for you all.

  3. Merriel says:

    I am so sorry you are facing such a horrible decision. We had to deal with this with my mom. She never laid a hand on us growing up but one day she got angry and started strangling my sister. Over time the episodes got worse and we had to hospitalize her like your husband on 3 different occasions. They usually kept her and balanced out her aggression with medication. We noticed over time that she had one of these episodes when she was having medical problems. She often had UTIs and heart problems. She did eventually start hurting other people in the nursing facilities. She was moved out of 3 different places because of her aggression. We had no choice but to put her in a facility because we couldn’t handle it on our own. It was the hardest thing we have ever faced but as others have said everyone’s safety is critical. One thing that helped us was if mom had been herself she would have insisted on us putting her in a facility to protect everyone. There is no good option. We had to focus on the immediate task in front of us or we would go crazy trying to handle the mountain of tasks in front of us. Often just taking a dementia patient out of their routine will set them off. we contacted some placement agencies that helped us decide what to do initially. Once we got mom qualified for state benefits she had a case worker that helped as well. I am saying prayers for all of you and for God to help direct you to the best options and give you some peace in your decision. If you have any questions on how we handled our situation, feel free to email me.

  4. Katie McGhie says:

    I am praying the doctors are able to find the right medication while he’s there to calm him so you can bring him home. We went through this with my dad who just passed of early onset Alzheimer’s about a month and a half ago. May God bless you and your family and give you the strength to endure this awful disease. Prayers sent from California.

  5. Lisa says:

    This is going to sound simplistic and unbelievable. Once he sees you and is home, he might return to “normal”. My mom had dementia. She did not do well with travel. Car rides during the day were okay as long as they were brief. Heaven help us if the sun went down. Fear and confusion would descend like a heavy black curtain. In hotels, she was very confused. Once we were home and a routine re-established, she was okay. Sometimes, it took a week. You and your sweet husband and family are in my prayers.

  6. Marilyn Klotzer says:

    I am so sorry Karen for what has happened to Jim. All your problems seem to be piling up on you. So many decisions to make. What to do with Jim the biggest. So sad for him. Let God help you. Strength and peace to you and your family.

  7. Jeanne Sapia says:

    Karen, I am so sorry for your family and my buddy Jimmy. What an awful nightmare you are all going through, Please let go and let God for a short while,. When you are able take it back for you to handle, God bless you and your family, My thoughts and prayers go out every night for you and Jimmy,

    Jeanne

  8. Laura says:

    God bless you. Jim is safe with doctors. He is acting out because he is in unfamiliar territory. Sadly – or maybe not- he will not remember this episode. Please try to take this time to do the “normal” stuff with Brad and friends. Investigate Seroquel if you haven’t already. He will be able to drive home with parents. You will get through this. Virtual hug.

  9. Hope White says:

    Karen, I am so sorry it has come to this as I remember when this happened to my Father and just as Jim he ended up going to the hospital for a short stay. Fortunately, his doctor put him on a stronger prescription, sent him back home and we applied for Hospice services. No more angry outbursts and we all became safe again and dad looked forward to the hospice nurses coming to take care of him. I will keep you all in my thoughts and prayers.

  10. Janet says:

    Hi Karen, my heart goes out to you. My prayers are with you. You are lucky to have Jim’s sister’s close to Jim to comfort him and spend time with him while you are doing all you can to get him home. That must be a comfort to you as well. Family support on both sides are a blessing!

  11. Lisa Olsen says:

    I have a get away trip to a wedding planned for August but your post has me planning in a different way than I would have thought. Thank you for that! My prayers are with you and your family as you discern where to go from here.

  12. Loretta Reid says:

    My heart is with you. My mother-in-law is in a memory care facility. I would ask the doctors if they would sedate him for the drive home. I agree with a previous person that he may return to the way he was before the trip when he gets in familiar surroundings. Also, have you tried asking churches for money to hire a transport back home. I know the Catholic Church helps those in need. Check with your local city they should be able to steer you to someone who can help you fill out the Medicaid paperwork! Remember the squeaky wheel gets the oil so keep after them!

  13. Christy T says:

    My heart is breaking for you, Jim & your beautiful children. I wish I lived closer to you Karen. Please know I love you and am praying you find answers!

  14. Anna Beth Lewis says:

    We went through similar circumstances with my dad – you definitely feel all alone even though you know many have been through the same situations before you. Some groups/people we found helpful: the local Hospice house was able to provide help at home a few times a week with both nursing/medicines care and also someone to sit with him so you can run errands – also, their case worker was a blessing – she helped us find a nursing facility to care for him when he was no longer safe at home; we hired an attorney who was well versed in our State Medicaid and he was crucial in helping organize his finances to get him qualified; the local Ombudsman was very helpful when we had dad in a nursing facility. Before he was in the nursing facility, we once brought him from OH to NC to stay with us for a few weeks. Although he did ok on the car ride to our home, over time he got increasingly agitated and acted out and broke items. I’m so sorry Jim is also experiencing this. My dad, like Jim, was the world’s most gentle, kindest soul. We had a doctor tell us once that oftentimes, those men/women can be the most physically/violent – he said it’s almost like they held those anger emotions in check for so long, now that that part of their brain is not working properly, they act out even more. I definitely saw that in my dad.

  15. Maybe the change to the new location and maybe a UTI is the cause. It doesn’t matter which you have a problem. I would sedate him for the ride home and just maybe he will not be violent. I think we have to expect a severe change during sun downing but once it is over he will be more like the Jim of today. Having just lost Joe I would bring him home for your peace of mind. Your children know enough about the disease they will be ok. Do what is best for your peace of mind. Love and pray for you and your family.

  16. Kimberly Pflieger says:

    Karen, every time I read your posts, I tear up and feel so fortunate. Although my mom was taken by this tragic disease, she was old, and her children were grown up.
    Your articulate and heart felt words are an inspiration to all facing this disease. You are doing everything the best you can, and you are doing all the RIGHT things.

  17. Nena says:

    Karen. This was very hard to read and incredibly heartbreaking. In every word I feel your despair. Having a husband with early onset, I feel this experience as if it was my own. So painful. Yes, we do in fact, support you and hold you and your family up in daily prayer. So many of us in number, unfortunately, grieve when you grieve. We are all together and you are not alone.

  18. Barb Shefelton says:

    OK, Crazy ideas, but …. Can we start a Go Fund me page to fly you there to be in the car with your folks on the way home? I know you won’t ask but I also know we could raise enough money for a ticket pretty quickly. He could be medicated enough to sleep through it all.
    Or a private medical transport flight, him medicated to sleep through it all but removing triggers of airport security and crowds.
    I can take the kids next week or the dog if you need to run out. And I always have wine and beer and a box of Kleenex!

  19. Ann says:

    Karen, I really don’t even know what to say — my heart breaks for you, and I truly can’t imagine what you must be feeling right now… Please know that you, Jim, and the kids are in my prayers.

  20. debbie says:

    my heart is breaking for you as well. praying for you right now. I agree it may be the travel and new place. the last time I traveled with my husband New Year’s eve, when we got to the hotel he went ballistic, screaming, throwing pillows–accusing me of bringing “other people”, and he did not want them there. I ended up driving us back home that night, and he was okay just about as soon as he got in the car to go home, it was like nothing happened. Travel is not happening; I know his family does not understand when I tell them it is hard for us to fly up there to see them. I can’t even get him to sit still in a restaurant with my family for 30 minutes; imagine him being on a plane for 3 hours or more… no way. I know it had to be the traveling and strange environment… but also check for a UTI, those are horrible, they affect their behavior much more than you think it would. I give my husband cranberry capsules every day, and he drinks lots of water. If I put bottles of water out, he will drink them. I think once you get him home he will be much better, but you will need to get him on different meds.

  21. Lee Ann says:

    Keep telling yoursellf that you are doing good, just fine. Everybody says you will feel good if you are successful, with Alz, there are so many steps forward and backward again, that you are always on your toes, just waiting. But you are doing fine.

    Did Jim retire from the military? He could go to a VA home. They do wonderful things there. Lots of help.

    there are social workers at the dept of Social services that will help you set up all your paperwork, find a placement, help you get your finances in order. Things will work out, you’ll see. And I agree with you taking care of yourself, and doing things (when you can for you and the kids).

    I have seen many aggressive patients. One family I called weekly to tell them their Mom was hitting people. They were embarassed and horrified because Mom just never did that kind of things. But they needed to reaize that Mom’s illness is doing this. not their Mom. Take care of you and the kids too.

  22. Ann leary says:

    Hi Karen, your story is a carbon copy of my sister with early onset. The assisted living facility had her ” sent out” because of her aggressive behavior to a geri-psych unit for almost two weeks for med adjustments. This helped a bit. We scrambled for a nice place with more skilled nursing care for her discharge. Fortunately, she has the means to be able to go into a beautiful place. Her aggressive behavior did not get better and like your husband her underlying personality is that as gentle as a lamb. She would hit staff and other residents. We had to make the decision to sedate her. She appears much more comfortable but this of course keeps her very sleepy. This disease has got to go. You and your children are in my prayers. Stay strong. And there are lots of resources out there. Do not let the hospital discharge him to an unsafe environment. Tell social services you cannot do it without help. Do not drive him back to Virginia !! My sister was so unsafe in the car. Demand help. People think because he may look young and fairly healthy, that he’s okay. You can’t do this alone!!!!

  23. Andrea says:

    Everyone’s family dynamics is different, so what works for one may not be what’s best for another. You probably discussed Jim’s care with him when he was still able to have a conversation. If you find that after you bring him home and medications are not able to control his agitation or aggression, what would he want you to do?

  24. Delaine says:

    Hi Karen, you and your family are in my constant thoughts and prayers. What you are going through right now is one of my biggest fears with this hellacious disease. When time allows, please give us an update. I pray you were able to get Jim home safely and without incident.

  25. Hi Karen, I find myself in the same situation and your post is perhaps the most poignant, relevant post I have read concerning Alzheimer’s and particularly for those of us who are the caregivers and reluctant decision makers. We too cannot afford to place mom in a home; yet her presence at home is a danger to herself and to the whole family. From a placid busy body she has become aggressive, unpredictable and uncontrollable…yet after numerous appeals and telephone calls requesting assistance in placing her in a suitable home we have to date found no organisation that has been able to assist us. Now we nurse, work and do the best we can and I often wonder whether we too will become statistics or be read about as a “tragedy”…You and yours will remain in my prayers and thoughts…*hug*

  26. LILA HEDGEPETH says:

    You are an amazing person. I know my time is coming. I hope I will be as strong as you. lila

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