“Do you fit this portrait?” Asks a recent article from Forbes’ on “Who America’s Caregivers Are And Why It Matters“. The article goes on to describe a familiar scenario:
“You are a 49-year-old woman caring for a 69-year-old female relative, most likely your mother. If you have an outside job, you do that work nearly 35 hours a week. You’ve been caring for mom for four years, about 24 hours each week. You are more likely than not to be helping her with medical or nursing-type tasks, including complex things like shots, tube feedings, catheters and colostomy needs.”
This is the description of a “typical” caregiver according to the Caregiving in the U.S. 2015 report released jointly by the National Alliance for Caregiving and the AARP. However, the report also specifies that “caregivers as a whole are becoming as diverse as the American population.” The statistics go on the show that there will be a greater need for caregivers in the coming years.
Read the Forbes article to learn more about the most recent caregiving statistics here: http://www.forbes.com/sites/nextavenue/2015/06/05/who-americas-caregivers-are-and-why-it-matters/
Or access the Caregiving in the U.S. 2015 report here: http://www.caregiving.org/caregiving2015/
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 firstname.lastname@example.org.
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.
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.