Monday, January 16, 2012

How Will I Know?

"There will come a time when a person with Alzheimer's disease will need more care than can be provided at home. The individual may need to move into residential care, such as assisted living or a nursing home."  - from The Alzheimer's Association at

A few years into this journey, I remember thinking to myself and asking others, "How will I know when I can't handle taking care of Billy at home?" The answer I heard from professionals was that I would know. I don't know if I expected a checklist or some clearly defined criteria, but I have not found those. For a while, I thought I might be able to keep Billy at home if I had the resources for that. I communicate with the wife of a Young Onset victim, and he remains at home in the end stages of Alzheimer's, but he has an aide for 10 or so hours daily six days a week. I do not have those resources, and even if I did have them, I am not certain that would be the best place for Billy. 

Billy's cognitive and coping skills have declined tremendously in the last few months. I can still take him places with me for short times, but I have to limit the length of time, and I have to plan to have him at home around 8:00 or 8:30 in the evening.  He goes to bed pretty easily, and he sleeps all night - huge blessings! When he gets up in the morning, I better have my running shoes on. I shower him now, and he's very compliant (thankfully), and as soon as I'm done with that, I take my shower while directing him to dry off completely and start shaving. By the time I get out of the shower, he has the shaving cream on and has usually started shaving, but he gets distracted easily. He forgets to look in the mirror, and he shaves by feel, and he might just stop halfway through and start putting away his razor. I tell him he's not finished, and I tell him to look in the mirror to see where he needs to shave. I also remind him to rinse his face, and then it's on to the deodorant, brushing hair and teeth, and I change his Exelon patch. If his clothes are laid out, he does pretty well getting dressed, except for his shirt. Now that it's cold, he keeps putting his coat on without a shirt, and I have to get him to take off his coat and get a shirt on. He's very attached to his jacket, and it's a challenge to get it off of him. This afternoon, I noticed that he had a sock on one foot and none on the other. That's a first. 

While getting Billy ready in the mornings is challenging and time-consuming, I think I could handle that if that were the only big difference. Billy's behaviors have become all-consuming, and he's struggling at daycare as much as he is at home. I receive phone calls from them wanting me to talk to him to see if I can calm him. Sometimes it helps for him to talk to me, and sometimes it does not. He requires one on one attention, and that's difficult at the Cottage when they have several other clients to care for. 

After Billy gets dressed for the day, I give him his medication, and I finally start getting ready. He shadows me the entire time, trying to ask questions. His struggles to communicate make him more anxious, but I nearly always know what he wants to know. 
1. Where is he going for the day? (It's always the Cottage, but he has to be reassured.) 
2. How is he going to get there? His caretaker is no longer meeting me in the morning, so he's riding the bus to the Cottage each day. After I tell him he's riding the bus, he says very clearly, "I hate riding that bus." No struggle with those words in the morning. 
3. Am I going to the Cottage with him? Sometimes this varies with questions about where I go when he's there. Where is my school? 
4. Can I pick him up at the Cottage? The answer is usually that he is riding the bus home, and he again tells me he hates it. He tells me "they" yell at him which could be true because drivers have reported to me that he starts getting out of his seat with every stop. 

During this time of halted questions where I fill in the words because he's losing them, he paces and wrings his hands. What a way to start the day. My heart hurts for him, and I get frustrated with him all at the same time. 

During the Christmas holidays, I began thinking about a good place for Billy. I've looked at assisted living places and nursing homes, and after talking with those who work with him daily, I'm not certain he can handle assisted living. He requires so much redirection and one-on-one time. Sadly, he doesn't seem content at home, at the Cottage, at my sister's for more than a few hours at a time. It becomes clear that he is uncomfortable by the fidgeting and pacing and constant questioning, but he struggles to articulate where he wants to be. I think this hideous disease puts its victims in distress where they struggle for contentment. Place doesn't really make the difference as far as I can tell. 

Because I must find a place that will accept Medicaid, that narrows my list of options. I'm learning more and more about the red tape involved in getting assistance. Because of all the rules and regulations, Billy will have to be in a nursing home for 30 days before I can apply for him to have Medicaid. Until then, he will be private pay. When he is accepted (could be up to 2-3 months), Medicaid will reimburse the private pay monies. That is one obstacle I've not worked out yet. Our money tree has lost its leaves. 

Shelley and I have visited many places, and we created our own simple criteria. First and foremost, if the place smells of urine and feces, we are out of there! Both of us have hyper sensitive olfactory glands, and that one is non-negotiable. The facility has to be clean - not new and beautiful - just clean and tidy. The residents should look content and maybe even happy. It also looks as though we need to have a secure memory care facility. Because Billy looks like a visitor, it would be easy for him to slip out of a non-secure place. He has never wandered from home, but I'm finding that nothing is predictable with AD. 

We have found a place that we are comfortable with. It's smaller and older, but the most important thing is the people.  You can place a loved one in a beautiful place and get crummy care, and you can place that person in an old not-so-pretty place, and they can get wonderful care. The care is most important. 

This is the most difficult decision I've made in our marriage - maybe in my life. I told some friends the other day that my head knows what I need to do, but my heart is struggling. I am at the point of exhaustion physically and emotionally, and it will not get better if Billy remains at home. I don't feel like I'm meeting all of his needs, and that is frustrating. God has answered my prayers in making this decision, and he's giving me peace with that. The actual act of taking him and leaving him is still ahead. I need many prayers for that one. I will remain Billy's caregiver. I will continue to make decisions for him, and I will see him daily. I look forward to going back to being his wife and allowing someone else to care for his basic needs. 

I will keep you posted on the process as we go through it. Your prayers and encouragement are always appreciated, and they keep us going. Thank you. 


  1. Praying with my heart and should that you may find comfort and strength in the Lord's loving and caring arms and in your family and friends.

  2. Hi Kathy! I am Jonathan's sister-in-law. We met you and Billy briefly in the Spring. My father had early onset Alzheimers and so much of what you are saying sounds familiar.Yes, you are absolutely doing the right thing. And yes, you will feel terrible about it at first. Then as you see Billy gradually adjust to his new surroundings, hopefully you will have a sense of peace and relief. He will still have good days and bad days but you will have a chance to get your rest and regroup each day.That is huge for both of you.
    My thoughts and prayers are with you and Billy.
    Mary Ann Hooper

    1. Hi, Mary Ann. I remember meeting you both last summer. Thank you for taking the time to affirm my decision. It's such a hard thing to do, but I know that it's the right thing to do. As a friend of mine (also the wife of a Young Onset man) said earlier today...NOTHING about this disease is easy. I appreciate your thoughts and prayers tremendously. Thank you.

  3. Hello Kathy this is Darla Gay, Billy's cousin I see you at Christmas at Cindy's house, I hope you do not mind Aunt Lana sent me the link to your blog....I want you to know that I am praying for you and the family. As you probably know my dad had the ALZ also and my sister tried to care for him after my Mom passed.....please do not feel guilty about your decision you are making the correct one, the strain of trying to do for someone you love when you are not equipped can cause you serious health issues and I know Billy would not want you to jeopardize your health, mental or physical , we feel that the strain is what kicked in the graves disease for my sister. You need to stay healthy not only for yourself but for Billy and the rest of your family too. As all of us cousins feel like we are looking over our shoulder in fear of this disease as a real possibility for any of us I have already told my loved ones to put me in a facility and to not look back in guilt and I am sure if Billy could tell you himself he would say the same ( all I ask is that someone sneak me in a almond joy every once in a while ! ) God bless you and may he give you strength and wisdom as well as comfort as you go through this difficult time.... Darla

    1. Darla, your comment came at a perfect time yesterday. It was a very rough day with Billy, and Shelley and I were both in tears when I saw your comment. I've had so many "signs" lately that this is the right thing, but none of them have made it any easier. I will call Cindy tomorrow to talk to her about Billy, and I know I'll cry when I do. Thank you for giving me a family member's perspective and for understanding. I have told Shelley the same thing you told your family about placement in a facility, and I'm taking out Long Term Health insurance because I don't want her to have to deal with all of this if I become unable to take care of myself. After I read your comment, I added the need for an Almond Joy! Tomorrow I will make sure Billy gets a diet Dr. Pepper! Please send me your email address when you have a chance. Mine is
      Thank you again, Darla. kathy

  4. Kathy--
    This is Greg Dunham, I am so sorry it has taken me such a long time to post and let you know that you and Billy are in my prayers constantly. I have cried silent tears several times as I have read your eloquent wordings as you struggle daily. I can relate to a degree as I watched my grandfather suffer through Alzheimers. I remember watching my mom struggle with his care, at first from a distance as they lived in Australia at the time and he lived in Kansas. I then watched it consume her life as she was an only child. From moving him out of his house of 50 years to assisted living, and then to a nursing home and finally to a care center here near San Angelo. And yes as Darla stated above, it was always difficult with each further step, for all concerned. And Billy will make it that much harder for you to feel right about the decision as he will find it difficult as well. But after a period of time, he will feel more comfortable with the stability. He will not be as anxious about each day. And it will make your time together more meaningful. In addition, you will be more rested and composed and better able to take advantage of the good stuff.
    God is right there with you! I know you know that, but sometimes it is nice to have someone point Him out to you as He stands at your side. Please give Billy a hug for me and Fawn.
    Greg Dunham

    1. Dear Greg and Fawn,
      What an uplifting note from you! Thank you so much for your prayers and for your encouragement. God is so good, and you are right about Him being right here all the time. I have delivered your hug to Billy several times over, and even though this has been a really tough week on him, he remains one of the nicest people around. I took him to church with me last night, and when I returned him to his new place, he walked right over to a sweet little lady who looked sad, and he gave her a big hug. Thank you for reading and keeping up with us. We have been blessed by you. kathy

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  6. I read your other post first so I apologize for writing out of turn. Mike has been on Medicaid since he was diagnosed...that's the ONLY reason why I have an aide all those days/hours. THe beauty,so to speak, of living with this disease twice is that you learn the first time. Mike's dad never took the house out of his mom's name, so when it came time for her to get Medicaid, it was impossible. As soon as Mike was diagnosed, I took the house out of his name and he was put on Medicaid. I vowed I would NEVER lose my house to them. I don't quite understand how it works by you and I know I would never have been able to pay privately for a nursing home for 2-3 months. God help you Kathy as you sort through all this. I will pray for your continued strength.