Sleep Deprivation

sleep deprivation

In late June 2008 my husband’s doctors still couldn’t find a way to get his anxiety level down to a point where he could sleep at night. I’m not sure he ever slept during that time. I know some will think I’m stretching the truth, but I rarely got more than twenty minutes sleep at a time from late April until the fourth of July. He needed company. My husband’s psychiatrist tried several medications but was not able to figure out a solution to our sleeping problem. He said the next step was to go to a psychiatric hospital. That my husband would be under 24 hour observation and a specialist would figure out how to get him to sleep. I was desperate.

We went to the hospital (a lock down unit) and prepared for him to check in. The process was lengthy. It took hours to go through the paperwork and interviews. By the time we were done with admission my husband didn’t want to check in anymore. He said he was tired and would be more comfortable if we came back tomorrow. You can be sure I was afraid that he might not want to return the next day. He was a very clever man. He could be trying to trick me. But, that didn’t happen. He was reluctant, but wanted to find a way to sleep.

Upon arrival the next day, I asked the staff to say that the rules were that I could not stay past 8 PM or arrive before 8 AM. I was determined to get sleep now. The doctor came in and discussed our case with us. He had prescribed a medication for sleep. That day I arranged for 24 hour personal attendants and taught them everything I could about how to take care of his every need. Believe me, the people that knew us well could tell you what it took to take care of this blind, deaf, impatient man who was used to my being there for anything he needed. I wanted him to be comfortable and cared for so we would have the best chance of this working.

It was hard to leave him that night, but I did. I had the deepest nights sleep of my life. It was July 3, 2008, a night for which I shall forever be grateful. Of course, the phone rang in the morning about 7 am. He had not slept. He said the attendant was behaving badly and when was I coming back? I took a shower, got ready and drove to the hospital thinking about how dangerous it was for me to be driving.

The next day went by with visits from one or another nurse on duty and from the doctor. Tonight he would try another sleep medication. Of course, my husband was complaining so the doctor told him that he could go home as soon as he slept through the night. Well, that did it. Mind over matter? The meds worked, he slept through the 4th of July fireworks, and conned an attendant to go to a phone and call me at 6 AM the next morning. At least I had two nights sleep and the promise of more to come.

After that things were “better” in the sleep department. We saw his psychiatrist every week for a while and then less often, until my husband’s passing in March 2010. I will always be so grateful to that man.

Hugs,

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Accept Your Feelings and Newfound Freedoms

Recently I came across an article on the AARP website that was aptly entitled, “Feeling Relief (and Guilt) at Caregiving’s End“. In it, the article discusses the emotions that caregivers go through once their care recipient is no longer with them. Feelings of guilt or of being misunderstood, in truth there are a number of different emotions that a caregiver can feel once this happens, but the emotion that may be the most difficult to adjust to (and even more difficult to accept), is the feeling of relief.

If this sounds like something that you are currently experiencing, then I strongly recommend reading the article by clicking this link. If you would like someone to speak with you may also send me an email at patricia@caregivingcornerstone.com.

Hugs,

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Moving is a Big Deal!

moving

Summer is over and I’m getting lots of questions all of the sudden about moving elderly parents. Some are moving to assisted living facilities in different states to be near different family members, others are moving in with their children, while others are moving to a higher level of care. In all cases, expect a move of residence to have a noticeable effect on the emotions of your loved one, at least temporarily.

Usually, it’s just a matter of adjustment. As things settle in after a few weeks and new routine takes hold, a comfort level sets in. Sometimes, it is a bigger adjustment.

Involving your loved one in many details of the move, in my opinion, can be a mistake. It can cause anxiety and heart ache. It might set everyone involved on edge. Keep it simple and be very respectful. You might be sorry if you think they’ll feel better being involved. Test with a few questions and see what response you get. Does it make them happy to be involved or do they change the subject or get angry? It requires more patience, but you will have a much better experience and a happier outcome for all concerned if your mom/dad is not reminded constantly of details about a move they’re often not happy about in the first place. If it’s time for you, the caregiver, to be in charge, than gently take charge.

Make the decisions about what can be included in the move generously. Having as many familiar pieces of furniture and pictures around as possible can make a huge difference in anxiety level. If you’re moving from one town to another, is it possible to put some things in a storage place, costing maybe $100 for about a month, to see how things go? It could be money well spent and you’ll know in short time if some things are not missed or needed. When your mom says, where’s my tray table?, I need it so I can sit in front of the TV while I eat, you will be able to honestly say, it’s safe, we couldn’t bring it on the plane, but it’s coming. Think of the sadness you’d both feel if you had to tell her you gave it away. With that said, it’s not going to be a perfect situation no matter what you do. If you do your best, you’ll know it’s all that could have been done. And that is perfect.

On moving day, be compassionate. If possible, have family or friends take your loved one away from the commotion before it starts and keep them from seeing all their possessions being moved. It’s a very emotional experience that can, hopefully, be avoided. If it’s a long distance move, I’m sure there will be a competent loving person accompanying your loved one. Doing all the moving-in and arranging before they arrive will make it much easier on your mom/dad. They can move things around to their liking later, but you’ll save them from possible disorientation, confusion and maybe depression. Keep things simple and uncluttered whenever possible for less confusion.

In my experience, when the higher levels of care are required, as in cases of advanced Alzheimer’s patients, the confusion caused by new surroundings can be permanent. It’s a sign that the disease is advancing. The Caregiver now needs to be more aware. Expect the unexpected. If you’re managing your loved ones care, and they live in a separate residence, you’ll want to ask more questions of the staff about behavior and the level of interest in socializing. Understand that people are still very clever when elderly and always want to be in control of their own lives. We all do, it’s human nature. Wandering into other residents rooms and “borrowing things” is very common. The management of a facility will not be shocked if a watch or purse is missing. Hiding things of value and not remembering where they are happens to the best of us! Sometimes pictures are gone from a photo album and found in another’s room. It’s just that a wandering resident found them interesting. They can easily be returned. Patience and compassion goes a long way here. For more information on this subject, please read my past blogs: Alzheimer’s I & II.

As in everything involved in Caregiving, your own good judgement about the individual situation is the best you can bring to the table. You have resources, you’re not alone. Please feel free to ask me questions and send me your stories. I love hearing from you.

Until soon, I wish you love and compassion.

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By the Seat of Our Pants

respecy

One of the most frustrating parts of being a Caregiver is that there are no instruction booklets for the most important moments we experience with the people we’re caring for. Those moments usually come upon us without warning. Suddenly one morning your elderly father (for example) is in a terrible mood. Nothing you do to make him more comfortable satisfies him. You check the usual things first; making sure he’s eaten enough, taken his pills and has water, pillows are in all the right places, his favorite TV program is on and his ear piece is working. Still he’s cranky or sad. He can’t really tell you what’s wrong. You ask questions and often get an “I don’t know” that’s accompanied by tears. Your practical mind wants to find a quick practical solution. If this is mental/emotional there is no quick answer or even a right one.

This is often a sign that there’s a lot going on mentally for him. We who are healthy and self-sufficient can’t possibly know what it’s like to be dependent on someone else for everything that goes on in our lives. I’m talking about dependent adults here, people who used to be in our position, taking care of others. They’re in the latter years of their lives and they know it. It is most likely an intense, often frightening time. Nothing is in their control and they can’t do a thing about it. How frustrating. Some have dementia, but not usually enough to keep them from having fears of the unknown. They think often of dying and don’t want to leave the people they love. I’ve heard that it occurs, but I’ve yet to meet someone who is near death that is ready to go. And I’ve lost five loved ones over the last eight years. They all struggled to stay alive as long as possible. Imagine the stress that is going on in ones body. Of course, it’s going to come out in any way it can find, as it should. And we need to be respectful and allow it to be released without trying to stifle it.

Many elderly people who are physically very ill still have minds that function as well as most younger people. My husband, my mother and my sister-in-law had very clear minds, aside from episodes caused by medications, till the day they died. My father, who had Parkinson’s, had some dementia for several years before his speech became so bad that it was almost impossible for him to tell us what he wanted to say. Yet, I could tell that his mind was working quite well in some ways because he would be trying to discuss complex or delicate issues. Lucidity would come and go, but he would amaze me with his judgement at times. My point is, we should never discount the mental acuity of people just because they are elderly and sick. They’ve lived longer than we have and they know more than we do about some things.

We need to give them space and time, too. Above all we need to be patient. Here’s where our intuition comes in, maybe we need to ask a few questions. If we’re careful enough we could ask questions that would help us understand if there were unfinished issues that are causing stress and need to be addressed in order to allow peace to take it’s place. I wanted my husband to be able to let go because he was suffering so much holding onto life. It was hard to see him so stressful. I wanted to know if there was something I could do to help him relax so I asked questions. Also, I asked if there were any things he felt were unresolved or that he wanted to tell me. I assured him there was nothing he could tell me that I couldn’t handle. I didn’t tell him why I was asking, just took advantage of an opportunity that seemed right. I, also, went down the line of all the people he was close to; his children, brother and so on. I gave him the opportunity to decide that he was good with everyone around him, or not. Your knowledge of the person you care for will help you know what might be a haunting issue, maybe you can bring it into the light, and therefore, relieve stress.

But, don’t press. Maybe they just need peace. Is their environment peaceful? If not, is there something you could do to fix that? Respect and peace seem most important here.

Until soon, I wish you love and harmony.

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Why Does It All Fall On One Person’s Shoulders?

shoulder

Responsibility seems to know where to fall, just like dust. It never misses. Have you noticed that you’re the one who recognizes when something needs to be done and does it? Have you wondered why other people, especially family members, seem to be oblivious to a loved ones needs? Have you felt like it always falls on your shoulders and resent that others, who should be aware, are avoiding a situation? Do you feel like they are selfish and inconsiderate?

Twice this week I’ve been asked how one should deal with siblings who are not helping take care of parents. It’s a common theme and important that Caregivers are clear about who they expect will be there to help them and who will not. It’s complicated! On one hand it’s best to have complete control and be the decision maker, yet it’s overwhelming at times and you can resent that there is no one helping relieve you of responsibility and tasks.

We can get lost in our own mire. Think of the only child who feels overwhelmed because all responsibility falls on them to take care of, sometimes two, ailing parents. Or, the one sister in a family who has three brothers who are off doing what men do and maybe throwing a few dollars at the situation. I met one man recently who had worked full time as an insurance salesman and raised three children by himself after his wife died when the children were young. He was a Caregiver if ever I saw one. Do you think he ever felt alone and wondered why? How about people who have children with learning disabilities and need to come up with a strategy to keep the family income flowing and bring the children up with the best care and most love they can possibly give? Will the person taking most care of the child or elderly person feel like they have the most difficult job in the family? Well, yes, at least at times. And, often it’s true. But, others will not always see that. They’re in different shoes.

To those who are feeling some resentment toward others who you feel are not contributing enough, I’ll make a suggestion. If it doesn’t work, then you’ll know you took the high road and did what you could before you let go. You might write a letter. This would be a nice letter, with no accusation and no threats. You would tell your sibling (for example) that you want to share what’s going on with your mother (for example) to make sure you’re keeping them informed. Tell them how she’s doing physically and mentally. You might tell them how often you’re taking her to doctors and what those doctors are telling you. You might tell them what the expenses are with which you could use some help, if that’s an issue. You could tell them how it’s working out for you and your family. Tell them what the tasks are and nicely suggest some ways that they might participate in the Caregiving. They probably haven’t thought of ways to help because you’re often the one who takes charge and they’re used to that. If asked, they might say, “Why didn’t you tell? I didn’t know.”

This type of letter could be written to anyone who you, the Caregiver, feels might need to know that you could use some help. You would close the letter by thanking them for anything they can do to help and let them know that you understand that they will do what they can. Then send the letter and let it go. Don’t sit around waiting for a response. You’ve done what you can. It wasn’t easy to write that letter. But, it was necessary. You don’t have to wonder any more where someone stands. They’ll either step-up or they won’t. You can now move on with clear understanding of your options.

One woman told me that her brother just throws money at the situation and doesn’t come to help. I said, “Wonderful.” How many of us would love to have more money coming in? Money helps, and he probably doesn’t have the nature to be very helpful if he was in the room full time. If he’s good at making money and he sends it, that’s a lot more than many others would do. Take some of that money and pay someone to come in and relieve you. Maybe he could pay you enough that you could quit your job for a while. That would be a big help.

We’re not all cut out to take care of others and too many cooks spoil the soup. If one sister lives locally and can manage to care for an aging parent, the other siblings should be contributing to the extent that they can. If they make phone calls often to keep dad’s spirits up, if they send packages so he has a nice surprise in the mail, it goes a long way. Maybe they can contribute money to ease the burden on the Caregiver and let him/her know how much they’re appreciated. They could send a gift to the Caregiver to say thank you once in a while. That REALLY goes a long way. They should ask what is needed and how they can help. That’s what thoughtful family members would do. They should, they should, but they often don’t. You’ve got to let it go.

Others don’t often do much and don’t contribute. Or, there are no siblings or anyone else to help. What are you going to do? You could sit around and feel sorry for yourself. You could make yourself sick enough that someone, even a stranger would have to step in and take the situation in hand. You could be an angry nagging miserable person who pushes everyone away and in the course defeats their own purpose. Any of these will just make you sick. If you start resenting your Caregiving you’re only doing yourself a huge disservice. When you make yourself sick, you wind up spoiling your own life and all the opportunities that are out there if you can just manage your situation with intelligence and grace.

Try to observe yourself from a distance and see that you’re meant to be in the position you’re in. It’s one of life’s challenging times, again! Isn’t that what life is all about? One challenge after another. Someone once said, “Even winning the lottery every week would become boring after a while.” You’ve been handed an opportunity to shine. To shine as the best Caregiver ever. You can accept it with grace by getting up every morning and doing what comes next without even thinking about whether it should be any different. It isn’t, at least not right now, and you’re going to be rewarded. You’re going to be stronger and more self-confident than you’ve ever been in your life as time goes on, because that’s what comes from being one who does a job well. That’s going to benefit you strongly down the road.

So switch your focus, do what will be helpful and move past all the annoying frustrations. What makes you happy? What makes you smile? That’s the thing to focus on. What are your dreams and how could you put something into motion that would take you a little closer to them? Don’t tell me you’re too tired and it’s impossible to dream. That’s just the noise inside your head that’s talking to itself. It’s not the you who knows something about yourself that no one else knows. I know, because I’ve been there. It’s when you allow those moments of your dream idea to pop into your head, while you’re cooking or giving someone a bath, that the task at hand becomes easier. You get through it faster and you get a little closer to your dream, too. Dreams are ideas and we bring them closer to our reality by imagining them to already exist. You will feel lighter and be more giving and compassionate if you dream big and often.

The person you’re caring for is having their own challenge right now and it’s a lot bigger deal than yours. You are helping them through their journey. They are helping you through yours. You’re in this dance together. Don’t disappoint them or yourself. Love and creativity will always get you through.

Until soon, I wish you lots of love and creativity!!

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