Tuesday, May 18, 2010

Another milestone has been reached....

Today Dear Younger Son and I went to the garage and brought in the Hoyer lift that has been in storage for about 2 years. When we first got our 6 weeks worth of training, bed baths, and a hospital bed 2 years ago, (paid for by Medicare, only because I asked for it) the medical supply company also sent out a Hoyer lift. Medicare paid for part of it, and we paid the rest. And, for two years it has set unused in the garage. Way more trouble than it was worth.

But, recently Dear Hubby has gotten weaker and weaker, and some days he cannot lock his knees when I pull him to a standing position. When that happens, there had better be a wheelchair or bed behind him.

Last week he and I discussed that as he got weaker and was unable to support his weight, we would have to make some changes. And, as things have turned out, those changes have come a bit faster than we thought they would.

So, this morning, we used the Hoyer lift to get him transferred from his bed to the wheelchair. A few bumps on the road, but over all, it went smoothly. I can operate the lift all by myself. Rather nice. And, he and I both felt secure that he wasn't going to fall.

And, now we are looking online for the conversion kit to make the lift electric. Using the Hoyer in manual mode (as paid for by Medicare) quickly makes you realize "this ain't gonna get it". Conversion kits run about $700. A small price to pay, perhaps. But ugh. Medicare isn't all it's cracked up to be, but of course, anything is better than nothing.

Now on to the next set back, adjustment, retraining, and finally another new normal. Ever increasing disability leads to learning new things, retraining your brain and adjusting to the new limitations.

Of such is life, when dealing with chronic progressive illnesses.

Thursday, May 13, 2010

Finding the end of the rope.....

So what do you do when you find the end of the rope?? You tie a knot and hang on, right?

That's what I'm trying to do. Just this week, I stood at my husband's bedside and said loudly, I NEED A BREAK! He kindly answered, Ok. And, I finished getting him, myself and my youngest child ready for the day. A friend was coming to sit with my husband, and I was about to head out the door for haircuts for daughter and I and then on to the dentist.

Dear Younger Daughter and I did enjoy getting our hair cut, but honestly sometimes getting a haircut can be just another thing on your list of "things to do" for the day. We stopped afterward and ate some Italian food, and had a nice little visit before the dental appointment. That was fun. And, Dear Younger Daughter did well get a little cavity filled, but like me, she is difficult to deaden and was in some discomfort. We returned home, I was tired. We visited with our caregiver for a while, I made coffee, and snacks, Dear Younger Son picked up take out for dinner, and we did little that evening other than watch a movie...... well, and our bedtime routine, which you get if you are a caregiver.

I haven't gotten that break yet, but the lunch out was a bit of a respite in between marking two things off my list. The next two weeks are more dental and orthodontic appointments for Dear Younger Daughter. And, I got a phone call this morning about my prescription sunglasses, evidently there is a problem, again. And, it looks like I may need to make a run to TSO, again. More appointments.

When do I get that break???? I'm not sure. Four hours on Wednesdays off, which are filled with appointments. And, Saturdays, four hours of Home Health Care, which are filled with grocery shopping, etc. Hmmm, that doesn't leave much time for respite.

Finding someone to be here for 24 hours, so I can have time off is NOT always easy, but I'm in the process of finding some way to get it done. I need a day at the beach. For some reason I know it is what will heal me, soothe my trouble spirit. Some music from the iPod, a book, wind blowing in my face....that's what I need. And, I'll get there, somehow, someday.

Just gotta hang on......

Saturday, May 1, 2010

Answering a question.....

Today, I received a comment from a reader and thought I would share my thoughts in a blog post.

Paula I wanted to ask you a question. Since my mother in law has passed and we are now full time caregivers for Pop, no one comes by to visit him. Before all of her sisters and family were always here. We have only had a handful of visitors since January. My sister in law comes every other weekend and she sits for us sometimes when the kids have a program. How do I go about telling them that he was a part of the family too. He needs his friends and family. We have our friends and I can see where it is bothering him. if you have any advise I would be grateful.

God Be with You and Bless You


LaLisha, thank you so much for reading and commenting on my blog. I am sorry for the loss of your mother in law and your children's grandmother......

I understand that your father in law has had few visitors since the loss of his wife. It seems that when someone passes away, many people do not know how to respond or what to say. Immediately following the death and during the time of the funeral people often call, send cards, visit and bring meals. But once the "crisis" has past, many visitors fall away and forget about the one left behind to grieve. It's a common occurrence.

While my husband is still here with us, we've noticed that fewer and fewer people come to visit. It's been a long while since we started down this road of caregiving and the emotion of the diagnosis is no longer fresh in people's minds.

Here are some things that may help you, and others who are struggling with watching your loved one grieve over the loss of friendship and fellowship.

1. Have a family meeting. Invite everyone in the family to come over and discuss the situation. Just by reading your comment, I see that not only is your father in law not receiving visits from family, but you have one sister in law who is coming in every other weekend to sit with dad. I know you appreciate that, and today it may seem like enough, but honestly if you are only getting a break twice a month, you may find it to be too little. Care giving is rewarding, but also very exhausting. I suggest that you let your family know that while you will care for your father in law day in and day out, that you need for them to come once a week and sit with dad for 4-6 hours so that you can run errands, and then 3-4 times a year, you need a week off and need someone to fill in for you. You are giving more than 100% everyday and you need to maintain your physical and mental health in the midst of this care giving. You have children and a marriage and your husband and children need you. You are valuable to many people. And, you matter.

2. Get out your father in law's address book and start making calls. Perhaps we think we shouldn't have to do this, if people genuinely cared. People do care, they just get busy or have difficulty putting action to their thoughts. I have found that inviting people over for coffee and dessert is a great way of keeping our loved ones in touch with their friends.

3. If you attend a church, let your Pastor know that your loved one would appreciate a visit. Or contact Sunday School teachers, and leaders of the Senior Group at the church. Perhaps there are people who would be willing to visit your father in law. We joined a new church in the past 6 months and we have discussed with our Elders and Pastor the need for fellowship for shut ins and home bound members. Perhaps your call will start a new ministry at your church. This is often how it's done. A members sees a need and has a passion for an area of ministry, and starts the fire going.

4. Contact your county's Dept. on Aging and Disability. Many times there are programs for the elderly that we are completely unaware of.

While the best thing would be for family and friends to see the need themselves, often that is not the case. "Out of sight, out of mind" is often the rule of the day. Once our loved one is unable to participate in the activities they once did, people often forget about them. Or they get too busy and assume that someone is visiting them. Unfortunately, that is not always the case. Many elderly and disabled people are left alone, with their need of companionship dependent on the the people who care for them day in and day out. And, the caregivers are left to meet each and every need alone. This contributes to caregiver burnout and often leads to our loved ones not receiving the care they deserve.

Thank you for your concern for your father in law. I understand how exhausting it can be to care for someone full time. We are so careful to make sure they are taking the meds, bathing, dressing, feeding, etc. that it's easy to overlook our loved one's need for fellowship.

Reach out and let his friends know that he needs them and would enjoy visiting with him.

Here is a hug to all the caregivers out there, striving each day to ensure that our loved ones are getting the best care possible.