Care Giving – Risks & Rewards

Toward the end of March 2019 when I went to visit my husband I found him sitting in a wheelchair, his whole body jerking every few seconds. I had someone help me get him into bed and I called for the supervisor of nursing to come to his room to see what was going on with him. She told me that the jerking was caused by his brain mis-firing and that it would settle down.

Although the jerking did stop later that afternoon, he was never out of his bed after that day. At first he talked, ate, and seemed pretty much himself but he was more quiet than normal and he slept more each day. He also seemed to be in pain but no one could identify the reason for pain even though the doctor saw him several times.

Some days he would just look at me with such softness and so much love in his eyes. He would often stare at me like he was committing my face to his memory. I would lie down beside, put the radio on to his favorite station, and hold him; he was totally relaxed and calm. One day he looked at me a long time and then said, “I don’t want to leave you but I’m going to have to.” He told me several days that he loved me and he kissed me back every time I kissed him.

After about three weeks of being in the bed he would hardly eat even though they would puree the food for him. He grew more and more quiet. He slept most of the time. I learned then that people with Alzheimer’s don’t “forget” how to eat, their brain just can’t tell them when or how to do it.

He was going downhill rapidly and there was an evaluation by Hospice as to whether or not he needed round the clock nursing. They began providing that care, bringing in a hospital bed for him. They were very attentive and helpful. They charted everything. He began getting pain meds every few hours.

Saturday April 20th was my birthday and the hospice nurse heard someone wish me a happy birthday. She asked if it was my birthday that day, I said yes. She said, “Nothing will happen with him today, he wouldn’t do that to you.”

The following day was Easter Sunday and I felt that, being raised a Catholic, nothing would happen to him on that day either. He made it through that weekend without any changes in his condition.

On Tuesday, April 23rd I felt compelled to go to see him around 10 that morning. When I arrived one of the nurses stopped me and said she was just going to call me because they wanted my permission to put oxygen on him. I said yes and she hurriedly brought a tank to his bedside. While she was doing all this I went into his room and was shocked at his labored, noisy breathing. What I didn’t know then was that it was what they call “a death rattle”.

There were several people in his room, the hospice nurse and her supervisor, the Artis nurse as well as the hospice chaplain and the social worker. Once oxygen was applied his breathing settled down. I felt there were so many people there and that I was in the way so I left.

I have a knitting group that meets on Tuesdays at a local Coffee House. I really needed to be with someone when I left so I headed there. Two of the knitters were there, I went in, told them what was happening and that I needed to be with someone at that moment. They cried with me and comforted me. I knew things would never be the same again.

At 2:00 PM I went back to Artis. He was resting quietly, his breathing quiet and pretty normal. I kissed him when I went into the room and he pursed his lips. I said to the nurse, “He pursed his lips when I kissed him!” She said, “Oh he wants to kiss you back, he’s just too tired to do so.”

I sat with him, rubbing his hands, his feet, his face and talking to him all afternoon. His sister came and sat there with us. She whispered to him, kissed him, and I think, said her goodbye. We left at 6:30 PM.

I got a call at 8:50 PM from the hospice nurse saying that “he had transitioned”. I said do you mean that he died? She said yes at 8:45 PM. I immediately went to him. I was shocked when I saw the peaceful look on his face and how smooth and calm he seemed. The nurse said that he was not in any distress, that he just peacefully died. I felt relieved that he had a peaceful passing; God had answered my prayer asking for mercy.

Taking care of a loved one is hard! But you know that by now.

Although you know intellectually that there isn’t going to be a good outcome for your loved one and you also know that your struggles can’t alter the situation, your heart still holds hope for the future. But there will come a day when you must face reality and when that happens you will need to have your head and your heart in alignment.

Alignment…..What does that mean? It simply means that you will accept the difficult reality of the situation both in your head (intellectually) and in your heart (emotionally). Believe me, you will be devastated when that moment comes.

So how will that awareness affect you?

It will crush you! You have now realized that nothing you can do will make a difference in the lives of you or your loved one. Oh yes, it will continue to make a difference in your daily lives and will most likely make you more caring and attentive even than before but it won’t increase the number of days your loved one has left to live.

Although it is a painful thing to do, reality indicates that you must take care to get things in order. You need to ensure that legal documents are updated so that wills and trusts accurately reflect the wishes of your loved one. Don’t put this off too long as your loved one may lose the ability to read and understand documents and may even lose the ability to sign his/her name.

You will want to make certain that steps have been taken to protect assets. In my own situation, our attorney recommended an “Elder Law” specialist to me. I sat down with her to review my documents and discuss my concerns. She made recommendations to my attorney and then the two of them worked together to review and revise documents. In all likelihood this will cost you several hundred dollars but unfortunately it is a necessity.

So for today, and all the days remaining with your loved one, just love them, kiss them, hold them, laugh with them, dance with them, read to them and make them comfortable. Enjoy being with them.

Don’t let them see your distress; do your crying in private but let your feelings out. Talk to friends and let them help you through this stressful time. Pray for God’s mercy and for his comfort for both you and your loved one.

The day was drawing near….that dreaded day when I would take my husband to an assisted care facility. I could hardly bear to think about what that would mean to both of us. I realized that our life together would be over. Things would never be the same!

When sitting at the breakfast table just the day before he had commented that he “felt like something bad was going to happen”. I don’t know why he thought that and could only think that either he had heard me on the phone with the Long Term Care Insurance Company or that, since we were so close, he had sensed my anxiety and concern. Either way I felt bad for him and I felt guilty that I was about to take such a step. However I also knew in my heart that I had no choice, things were just to unstable for me to continue home care.

On “moving” day he ate a good breakfast and was calm and sweet. I was sad and felt guilty; I had a difficult time keeping a smile on my face and forcing cheerful conversation. I hated to see the clock moving steadily toward the 1:00 PM appointment time. I had previously told him that I found a place where they might be able to help him with “finding the words” and he had agreed to go there with me for the appointment. Of course he didn’t know he would be staying there.

Then, when I told him it was time to go, he put on his coat and hat, walked through the entire house as if he were looking at it for the last time and then walked downstairs and into the garage with me. Then he said he had to go to the bathroom and walked back into the house. After going to the bathroom he went into our Garden Room and sat down in his favorite chair. He refused to move from there. I called the facility to tell them that I couldn’t get him to leave the house and we would be late for our appointment. They offered to come over to help me and I said no. I knew that having strangers come into our house and try to convince him to leave would be a scary and upsetting thing for him.

I called his sister. She came over and talked to him finally convincing him that he should go with me to the appointment and that his mother would be disappointed with him if he didn’t go. The mention of his mother was the motivator for him.

The staff at Artis was very nice and helpful and put him at ease with their friendliness. After a tour of the facility we visited the room that I had selected for him and where we had already taken some family pictures and personal items as well as clothes. After a while he looked at me and said, “I’m tired now. Let’s go home.”

Leaving him there, sitting on the edge of the bed with one of the Artis staff members talking with him, telling him how happy they were that he was going to spend some time with him and that they were going to try to help him, his sister and I left. We planned to go back at 5:00 and have dinner with him.

When we returned at 5:00, he was in the hall outside his room, wearing his coat and hat and was very angry at both his sister and me. The worst part was when he looked at me and said, “How could you do this to me?” I tried to convince him that they were going to try to help him but none of my words meant anything. He just got more and more angry until his sister told him that was enough and he quieted down as he stalked down the hall away from us. I didn’t know what to do…..should I follow him and continue trying to settle him down? I started walking down the hall, just a little ways behind him.

One of the Care Partners was standing at the end of the hall and I asked her what I should do. She said just leave him alone, go home…we’ll take good care of him. We left. It was awfully difficult to walk out that door as we watched him walking down that hall in his coat and hat, so alone. My heart shattered!

When I pulled into our driveway I realized that he would never be there with me again and I began to crumble inside. I walked into the house where we had lived for 30 years and it didn’t feel like home anymore. I was a stranger in my own house. I called my son and broke down, crying and talking with him for an hour. I think I was in shock and already questioned whether or not I had done the right thing by putting Al in a facility. Was I giving up too soon? Was I being selfish? What would I do without him?

I spent another hour on the phone with my sister, talking and crying. I missed his presence, I missed seeing him and like she told me, half of me was gone. That was true and I couldn’t help but wonder what would I do without that important part of me.

Knowing that I was alone was devastating; I just never thought I’d grow old alone! It hurts in so many ways to lose my sweetheart!

December 2017 was a difficult month for both of us with the upsetting Emergency Room visit and the events that followed later in the month. At this point we were taking a drive almost every night, some longer than others. These drives were attempts on my part to satisfy Al’s wanting to “go home”. I thought perhaps going out then arriving back at our house would make him feel like he was home. As I said in earlier posts, this tactic didn’t work but I could generally get him to go to bed when we returned.

Most of our drives were uneventful with my keeping up a steady stream of chatter and him being silent. There was one time though when he opened the car door as we were driving along. Fortunately we were on a residential street that had speed bumps so I was going slow but I can tell you that his actions frightened me and when I loudly exclaimed, it frightened him. I believe that he did not know what he had done or that it was dangerous.

Then one night in the middle of the month he refused to get out of the car when we returned home. It was late and no amount of my pleading convinced him to go into the house. Finally about 11:45 PM I called his sister and asked her to come over to see if she could help. When she arrived she, after a while, convinced him to go in but he had become very angry with me and refused to go in if I was there. So I stayed outside, hiding behind the car until he went inside.

Once inside he sat down, still wearing his coat and hat. He would not speak to anyone except his sister but at one point, his anger switched back from me to her and he would no longer talk to her. Finally around 2 AM they left but he continued to sit in his coat and hat, not speaking, all night long. Around 7 AM I told him that he could go to bed since I would not be in there and he did. He slept till mid afternoon and when he woke he didn’t seem to remember anything about the difficult night we had.

After that night I knew that things had gotten to the point that I could no longer take care of him and frankly, at that time I was beginning to have some concern for my safety. Since he frequently “saw” people in the house and would tell me that they were trying to kill us, I feared that he might hurt me thinking he was protecting me. I hid all the knives and sharp objects.

It was cold, 26 degrees, with strong winds and snow flurries on Christmas Eve when we went out at 11:00 PM for a ride. When we returned home he wouldn’t get out of the car and since there wasn’t room on the passenger side to exit the car once it was in the garage I had to stay outside in the driveway. After 15 minutes or so I convinced him to get out. He went into the garage and I pulled the car in. He stood there, tall enough to look out the small windows in the garage door and wouldn’t say anything.

Fortunately the garage was heated but it was only about 40 degrees and soon felt chilly. I tried and tried to get him to come into the house. I couldn’t go in and leave him there as I was afraid he would open the garage door and go outside. I felt so helpless and alone, there was no one to call, no one to help me and no way for me to help him. I broke down! I begin to sob and put my head down on the trunk of my car, letting all my frustrations and fears come out.

My tears seemed to open something in him and he said, “What’s wrong?”

I replied that I didn’t know what to do and asked him again if he would come into the house with me. He did. When we went to bed that night he held me close and I knew that he was sorry I was upset. I cried silent tears again that night.

I had previously wondered how I could ever put him in a care facility and now I realized that I had no choice. I had reached my breaking point.

After the incident in the middle of the month I had talked with our primary care doctor and he told me that it was time….that I needed to look for a facility. Al’s sister told me the same thing. Even thought I didn’t want to do it, I accepted that I needed to look at places.

As I’ve mentioned earlier I quickly found a lovely place and made arrangements. I changed my mind two times in the next couple of days but I knew in my heart I had no choice but to move forward. We had a move date for December 28, 2017.

My heart was breaking!

The holidays are over….you’ve survived! I’m sure it wasn’t easy for either you or your loved one.

Hopefully your holidays were problem free and you didn’t have too many visitors. Although they don’t mean to be problems, visitors can change the dynamics and affect the atmosphere in your home. Your loved one may become agitated or even combative with visitors when they approach him/her. Keep in mind that your loved one may not know who these visitors are and may be frightened when the visitor approaches him/her. You’ll want to be watchful and you may need to remove your loved one from the situation that has evolved. Having visitors also puts an additional strain on you.

One of the most important things to remember when caring for someone is that they need to be kept safe and that they need to feel comfortable. Simple? Not so much……

One of the things I learned early on was that my husband responded to my touch even when he was scared, unsettled or somewhat aggressive. After he went to the facility he would often give the care partners a hard time when they needed to change him or clean him up. I learned that, when I was there, I could assist them by putting my face close to his and talking softly to him, whispering assurances and endearments, while they took care of him. The sound of my voice alone helped to calm him.

You will no doubt find that your loved one responds positively to your touch and your voice. Hugs, holding hands, and other casual touching are some of the ways you can show your love. Experts say that interaction with others and music are two things that stay with dementia patients longer and that you should use every opportunity to put one or both of these in play when possible.

My husband loved music and I kept a radio playing in our house all day. After he went into the assisted living facility I would often lie down with him, put his favorite Sirius channel on my phone and put my head on his shoulder or my arm around him. Sometimes we would talk but more often we just laid there, enjoying our time together. At these times I would close my eyes and remember the many times we had lain in bed, planning a vacation, discussing current events or simply holding each other. Those were the good times!

So now we have made it past the holiday season and are back to our normal routine. Where so I go from here? Can I maintain the level of care he needs? Do I have the courage and strength that I need to sustain me?

Does he know how much I love him?

It’s December 24th, Christmas Eve day. Although you’ve gone through the motions and would like to pretend this will be a normal Christmas, you know in your heart of hearts that kind of holiday just isn’t possible now. So what do you do? You put on your game face and somehow you will get through today, tomorrow and the days after that.

Despite feeling sad, lonely and even somewhat resentful, you accept the truth that the holiday seasons of previous years are no longer possible for you and the loved one that you are caring for now. The years of family gatherings, family dinners, gifts and laughter won’t happen this year.

If you have visitors come to your home over the holidays, you need to make sure that your loved one is kept comfortable and if able, can participate in conversations or activities. Although you may enjoy having guests, remember that the person you are caring for comes first and your time and attention must be directed mainly to him/her.

Please pay close attention to his/her comfort and remove them from the situation if you sense they are becoming agitated or confused. They may just need to get to a quiet place.

All this will no doubt put additional strain on you and you may also begin to feel agitated or even upset. Holidays are difficult when you are in the position of taking care of someone. So how do you handle the additional stress of holidays?

Each of us handles stress in different ways….you may choose to not participate in holiday celebrations or you may limit your activities and keep as close to your regular schedule as possible.

Regardless of how much you choose to participate in holiday events, you will have several negative feelings during this time of the year. So when you feel alone, lonely, sad, concerned, irritated, hopeless and resentful or angry, please give yourself some time to sit quietly and maybe even cry a little. Pray for strength and courage. Don’t show your frustrations to your loved one, put on a happy face and go about your day.

Just know that you are important in someone else’s world and also know that what you can do for them is to ensure their remaining days are comfortable and happy and that they are kept safe. Although you will still have feelings that are hard to deal with, you can also feel proud that you are giving another person security and comfort.

My husband had Alzheimer’s and eventually was at a point where he had lost most of his memories but he never forgot me! I was overjoyed knowing that he still knew who I was and that he loved me. So you see, there are some good, or even happy, feelings that are caused by your knowing that the person you loved is still there, inside the person you are now caring for.

Have faith not only throughout the holidays but every day….faith that YOU CAN DO THIS!

The year was 2017 and it was early in December. The year had been difficult and Al’s Alzheimer’s had progressed significantly. There had been several incidents during the year that made me wonder how much longer I could care for him at home. Both his sister and our primary care doctor had suggested that I look for a facility where he would receive good care. I didn’t even want to consider doing that….I could take care of him….I was sure I could.

Early in December there was an extremely difficult time when he needed to go to the ER and wouldn’t let me take him. After a trying night I finally, around 4 AM, called 911 to transport him to the hospital. They were wonderful with him and convinced him to let them get some clothes on him and go with them. He was upset with me that I had called them.

The ER personnel found that they would have to remove the bowel blockage manually and gave him something to relax him for this painful procedure. There were complications and they ended up giving him a second medication for relaxation. Of course he was frightened and in pain; I stood at his head, stroked his face and talked to him all the while, trying to sooth him.

After the procedure was complete, Al fell asleep. After about an hour, they sent us home. He was still asleep. When we arrived home, we found that his sister, her husband and I couldn’t get him out of the car and into the house. I ended up calling 911 the second time so they could help us. The medics said he should not have been sent home in that unconscious state and that he needed to go back to the hospital. They took him back to the ER.

After he was checked over by the nurses, we finally saw the ER doctor and not the PA who had tended us earlier. The doctor told me that they were going to give him an injection similar to Narcan which would reverse the effects of the drugs he had been given. He was awake within a few minutes of that injection. They kept him overnight, thinking he had some kind of infection and it was a terrible night. The hospital staff was not kind or helpful and didn’t treat either him or me very well.

It was quite obvious that this hospital staff did not know how to deal with persons suffering from dementia of any kind.

This had happened on the 5th of December. We had other incidents during the month that were difficult and troubling. I realized that I could no longer take care of him, provide for his needs and keep him safe. What a terrible realization that was for me! I had prided myself on providing good care for him and now I could no longer do it. Was I giving up too soon? Had I really reached my maximum capacity for taking care of him or was I just too tired and stressed to think clearly? I needed to make some very hard decisions now.

After the troubling experience we had at the ER on December 5, 2017 I realized that this Christmas would most likely be the last one Al and I would have in our home.

We had stopped doing a lot of Christmas decorating a few years earlier when we were able to spend the winter months in Florida and just never started up the practice of decorating when those winter vacations stopped. I had even given away our Christmas tree.

But in 2017, realizing that this was no doubt our last chance of having a Christmas tree and enjoying Christmas at home together, I decided to get a new tree. I found one at Michaels that was called a pencil tree, tall and slender and just right for the corner of our garden room.

At the time, Al was sleeping much of the time and, as he lay sleeping on the couch, I put up our tree and decorated it. I turned the lights on and admired my handiwork, anxious for him to wake and notice the tree.

He didn’t notice the tree and when I pointed it out and said, “What do you think, isn’t it pretty?” he just looked that way and said, “Yes, it’s nice.”

I’m not sure he even realized the significance of the tree or even that it was Christmas. For that matter, I think any recognition of holidays was gone. It was just another day to him.

Knowing what he has lost just makes me love him more and makes me want to give him some happiness. May God help us both as we struggle.

I am tired! Physically, mentally and emotionally. I feel all used up. I feel alone and helpless. I also am beginning to question my decision making…..am I doing the right things for him? Could I be doing something something better, could I somehow slow or stop the progression of Alzheimer’s?

Being a caregiver is no easy task!

I think it might make a difference whether the one you are caring for is someone close to you or a stranger. I’m no expert but I would think that you could do more, and with less hesitation, when you know the person. In fact, I found myself doing things that I didn’t know I could do. Things such as cleaning up bathroom accidents; using a plunger (and sometimes even my gloved hands) to clear a blocked toilet; giving a bath which included washing private parts; brushing teeth, giving enemas, inserting suppositories, etc. The list goes on and on. The need is there and you somehow just find the strength and stamina to take care of it.

But in between those duties which are sometimes distasteful and generally difficult to do, there are moments of smiles, laughter, hugs, maybe even some meaningful conversation. These are glimpses of a former, pre-disease, person. And, maybe for a little while, you can even pretend that things are o.k. in your world. These moments are precious so keep them close and bring them out to help you get through the bad times.

Sometime during the day I look at him, sleeping on the couch. I look at his face, a face I have loved since the first day I saw him and my heart cracks just a little bit more. Tears slide silently down my face and I whisper, “I just want him back, I want him back the way he used to be!”

It’s hard to get things accomplished when you have to call someone to come over to stay with your loved one so that you can go out for a while. In 2017 I found it necessary to get new glasses after having my annual eye exam. I knew that might take a little time and I had to have someone stay with Al while I was away even thought he would be sleeping when I left and would probably sleep most of the time I was gone.

His sister came over to stay with him. I hadn’t realized until that day that maybe she didn’t know the full extent of the changes the disease had made in him. But when I returned home that morning she told me that he had walked into the kitchen wearing just his tee shirt and when he saw her there instead of me, he pulled his shirt down to cover himself. Then he calmly walked over to the waste can where I put papers that were to be discarded and he peed in the can. He then went back to the bedroom.

She was shocked! Shocked not only at his behavior but shocked that he hadn’t realized what he was doing. When she was telling me about this I realized that she had not known how much the disease had changed him. That was the day that she knew he would not get better but would continue to go downhill. My heart went out to her.

If there was anything good about that morning it was that now she knew what I was going through and her knowledge gave me someone I could talk to and who would understand my feelings and the loss I felt.

However there were some other things that were getting worse. For example, he began asking repeatedly to go see his parents. Both of them have been gone for several years. After his insistence that I tell him where they were I told him that they were in the cemetery. He said, “Oh, you’ve bought into that crap.” He insisted that he wanted to go get them and bring them to live with us.

This went on for weeks. Finally one evening after he had already been in bed for a couple of hours, he came into the room where I was and told me that if I wouldn’t take him to get them, he would go by himself. He was dressed and wearing his jacket and cap. My heart ached for him as he stood there in the doorway, dressed and ready to go. I told him it was too late and that we would go the next morning.

Frankly I didn’t know how I could get him to accept that we couldn’t get them. The following morning I got up early and at 8 AM I called the cemetery and explained to the woman who answered that my husband had Alzheimer’s and was intent on coming over there to get his mom and dad. I told her that I didn’t know if I could talk him out of it and that if he insisted, I would have to bring him as I couldn’t let him out by himself. She assured me that if we came to their office they would handle it gently. I could have hugged her!

As it turned out he had forgotten about it when he got up and the subject never came up again for any length of time.

That evening when he was so insistent on going to get them, I felt so powerless and helpless. I went online to the Cincinnati Chapter of Alzheimer’s Association and asked them what I should do. Unfortunately it was late when I sent that message so I didn’t hear back until the following morning and by then I felt like the situation was under control for the present.

But once again I realized there is no “how to” book that would lead me through these days. And I wondered, where could I turn when I needed answers? Who was there to help me know what to do?

Once again, I prayed for guidance.