Mom's With Disabilities

The patient I'm going to blog about I didn't get to meet. (This is a patient from phys. dys. FW) All I saw was her medical, OT and PT charts. She is a 42 yof, married with a 2-year-old. There was an incident where she jumped/fell into a 4 ft. deep pool. She suffered an incomplete SCI and a broken back. Her charts noted that she is currently on Zoloft and Wellbutren, narcotic pain killers (pill and patch form) and other medications specific to her SCI. Her chart noted that she has been a no show to multiple appointments. On the 25th she was scheduled to come in for a functional evaluation. This evaluation was scheduled to last 4 hours, she didn't show up or answer the phone when my supervisor called her. I couldn't figure out why someone just wouldn't show up to an appointment, at least not without calling to reschedule. Later on that day we had a man who was dragged in by his parents. He didn't want OT, he didn't want to do anything. He was suffering from severe depression. It then occurred to me that maybe it was her depression that was keeping her from coming to her appointments. She has severe depression due to the fact that she cannot care for her child the way that she would like to be able to.

At first I was annoyed that she didn't show up b/c if left me with 4 hours to kill wandering around and observing PT sessions but after coming to this realization I had a change of heart. I felt strong empathy for this woman. A lot of us in this class are mothers. Could you imagine not being able to do the things you want to with your child? Or not even being able to care for them the way you want to? That is probably the worst feeling in the whole wide world.

The charts stated that she had received disability papers while she was in acute rehab. Those papers cannot be completed without this evaluation that she missed. I'm sure that disability would help with the financial stress that her disability has caused. Then another possibility for her not showing up popped into my head. Maybe she had a fear that her child could be taken from her. Maybe she is thinking that if the eval shows that she meets the requirements for disability then she is too disabled to provide quality care for her child. It wouldn't be the first time that a disabled mom lost custody of her child.

I feel so much for this woman. She is in what probably feels like a no-win situation. All I can do it hope that she has a strong support system and someone to share her feelings with.

The internet has made it so easy for people all over the world connect with each other. These are links to on-line support groups for mom's with physical disabilities: http://www.facebook.com/group.php?gid=30111267180#!/group.php?gid=30111267180&v=wall; http://www.circleofmoms.com/stay-at-home-moms/disabled-moms-585913

Double click my title to find a link of a video where disabled mothers talk about their struggles and successes.

Here is a additional youtube video of a mom who uses her feet to care for her child. She is truly amazing! She has other videos on her of her doing other tasks with her feet. http://www.youtube.com/watch?v=AmBOCkfbDG0&feature=related

Gus

I recently had the pleasure of meeting Gus. As Gus made his way down the hallway at my fieldwork site, I saw the huge impact he had on the residents and staff as well. He didn't say much, actually didn't make a sound. The smiles he brought were contagious! I do believe that a few of the pt's. seemed to work harder at their activities, even seemed to press on for the ultimate goal. As Gus sat quietly waiting in the PT/OT lab, it was obvious he knew his place. He waited patiently for his turn- and he knew exactly when that was! When Ms. E finished her card game (working on the B UE), and Mr. M finished ROM activities, the hands were extended and Gus's time had arrived. His tail was wagging, and the smiles were everywhere! Gus had arrived!! I saw the joy, love, and the sheer power that this one big dog could bring to so many. It was amazing to see the powerful impact and comfort that he brought to the residents!

Postpartum depression

I recently met someone suffering from postpartum depression. I have two children myself and I never had to deal with this issue. Postpartum depression is something I do not know a lot about. Therefore, my understanding of it's impact on a mother is limited. Having suffered from another form of depression and how debilitating it was, I know how hard it is to go through something others don't understand unless they have been through it themselves. This person I met had a lot of medical problems other than PPD. It seemed to me that the PPD was the last thing the medical field was concentrating on or treating. I wonder if the PPD had been considered among the top things being treated, would some of the other conditions improve faster? I think attitude is one of the most important things in getting well. If a mother has PPD, I'm sure her attitude would be affected. The mind can have both a healthy and unhealthy effect on the body. If you think someone is suffering from PPD, don't judge them, please talk to them and get them to seek medical advice. Click on the title for signs and symptoms of PPD.

Psychosocial Effects of Disability

I recently had the privilege of working with a patient who had suffered a M.I. He had a pacemaker implanted and was recovering well. I met him in the middle of his OT therapy and despite the recent attack and the new addition to his body, was in relatively good spirits - I soon discovered why. This man was married and his wife was obviously a big part of his life. He spoke of her constantly, she visited at least a couple times each day, often staying most of the day. She brought him everything he needed and things she thought he might like to have in the hospital to keep his spirits up, like things to do and read, pictures and cards etc. She was obviously a constant source of comfort and encouragement.
In therapy, he spoke about his M.I. and what a shock it was to realize he was in bad health. He spoke about his future limitations and how he would have to pace himself now. He did his therapy in good spirits and was talkative and pleasant. But his conversation always centered around his wife. What they used to do together, where they would go, what he made for her and what he would make next. He spoke of when she came last and when he was expecting her again. I soon realized that this man's wife was a huge part of why he was accepting his medical condition so well, and why he was facing his limited future with confidence.
When it came time for him to be discharged, his wife was there to do "family therapy" along with him. We talked about his limitations and the importance of how he needed to move his body, his need for rest and slow activity. His wife was very involved, talking about what she would do to help him and basically reassuring him that "they" would handle this together.
After they left, I was left wondering about the patients who have no one to visit them, no gifts or words of encouragement while they are there, and no one waiting at home to help them. They certainly have the concern of the doctors, nurses and therapists and many of these are well trained to give words of encouragement and reassurance, but what happens after their stay is done? Many have to go to a SNF temporarily or even permanently.
There is no substitute for the moral and even physical support that we get from our family and friends. What bigger motivation to recover is there than to return home to a happy supportive system? Our role as therapists, beyond basic rehab, will be to teach the patient coping skills, educate the family on how to support the patient, and then give resources for them to move forward.

Attached is an article about returning to life after a heart attack.
http://familydoctor.org/online/famdocen/home/common/heartdisease/recovery/002.html

Pets and Rehab

When on my fieldwork this past Friday, I discovered an issue that I'm surprised doesn't come up more when dealing with inpatient rehabs and elderly patients. A patient had a R CVA and had been in the hospital for a few days. The patient had a good prognosis, good strength and was on the road to being independent in his ADL's. There was one thing holding him back from putting all he had into therapy - his dogs at home. His wife was frail and living at home, be he knew that she was no match to their two dogs, a 6month old german shepard and a 1 year old black lab. He was more worried that they were not being taken care of than how his wife was doing. Apparently these dogs were his newly found children and followed him where ever he went on their farm, essentially staying with him all day. Now that he was in the hospital and hadn't seen them in days, he was in complete distress over how they were being cared for. He was almost depressed because he hadn't seen his dogs. This was a wake up call that this situation was hindering him from progressing his rehabilitation. What I saw next was amazement. The recreational therapist came in and told him that she could set up a visit from his dogs. As long as they were bathed, up to date on shots and had their nails clipped, that they could come in and visit him. You would have thought that they told him that he had won a million dollars. I could see the life come back in him. He called his son and had the trip set up for the next day. The rest of the day all that he could talk about were his dogs and how happy he was that he was going to see them the next day. His therapist described how much of an impact that his dogs coming to visit had on him. He was actively participating in therapy and actually putting some work into it. I think that this was a great example on the effects that psychosocial impact can have on rehabilitation. All this patient needed was to see his dogs, to know that they were ok to give him the motivation to get well. I can also see how a physical disability can affect your identity as a person also. I have had previous contact with a patient who had a lower extremity amputation. This fellow thought that his life was over after the surgery. He didn't think that anyone would look at him the same, or even look at him at all. As a young, single male, I could see how this had taken a tole on his self confidence. And why wouldn't it? Losing a leg is hard enough but when you are young and in the best part of your life, a traumatic thing like this happens? Devastating. The way that we helped him cope with this was to set him up with a support group with other amputees to help him express some of his grief from losing his leg. They were able to share their experiences with him and also how they had went on with life and made the best of it and not staying down and negative all of the time. They were able to meet out at places and he became more and more comfortable with his new life and also his new leg (he was able to get a prosthetic). I think that a support group is the best way to cope with something like this. You are surrounded by people who are in the same situation as you and are able to share experiences that others may not be able to help you with. Support is the key, you feel accepted. Here is a website that I love; www.petsastherapy.org , that tells all about pet therapy, when animals can come into the hospitals to have the same impact that this mans pets did, to all patients.

Colic and Depression

My daughter in law (DIL) and two young babies has come to live with us while our son is deployed. Our newborn granddaughter has colic. According to the kidshealth.org website colic is defined as 3 or more hours of crying for at least 3 days per week for over 3 weeks. The baby does not have the traditional type of colic which is usually in the evening for several hours at a time. She cries for 1-2 hours at a time two or three times a day.

Brown University has completed a study finding a link between colic and depression in women with colicky babies. The study is quick to point out that colic and depression are not a cause and effect relationship, but there is some connection. Brown University sponsors a Infant Behavior, Cry and Sleep Program to help parents find support during this difficult baby behavior. The study will help pediatricians to at least screen mothers for depression if the baby has colic.

My DIL is dealing with so many feelings right now as my son is in training to be deployed, caring for a 19 month old and a newborn with colic and new living situations. The added feeling of not being able to help the baby stop crying makes my DIL feel inadequate, anxious and depressed.

Many days after I get home from school, I spend the next hour or two holding a crying baby while my DIL takes a well deserved mental health break. Also I have encouraged my DIL to talk with her doctor to about the possibility that she might have PPD since she is at greater risk for developing PPD. (She had PPD after her first baby.) The doctor was very responsive in treating her.

Some tips for a family dealing with colic include taking a break, understanding it is no ones fault that the baby is crying and to put the baby in the room if needed. No baby has ever cried to death. Also most babies outgrow colic between 3-4 months old.

The following website offers advice on dealing with colic: kidshealth.org/parent/growth/growing/colic.html#

The link for Brown University study:

www.brown.edu/Administration/News_Bureau/2005-06/05-114.html

I am glad that our family is able to help out our DIL and relieve some of the stress of dealing with colic. Some parents are not as fortunate to have help around and the stress can be tremendous for everyone in the family. If you know of a family with a baby that has colic, volunteer to take care of the baby so the parents can take a break.

Restaurant Outing

My triad and I, along with a staff member, took our guys on a field trip to a healthy restaurant. We did this to reiterate eating healthy and practice controlling portion sizes, which we have been discussing for a while now. The guys are pretty self-sufficient in their own environment, but it's a totally different story when we went out.

Our book keeps emphasizing the importance of clients learning a new activity in their normal environment or at least a simulated one. After having first-hand experience in dealing with individuals with mental illness who are not in their normal environment, I get it now! When our guys are at home, they come and go as they please around the house and nearby outside, so one doesn't really get the full affect of their limitations. However, when we were at the restaurant, we had to escort them everywhere they went. To be honest, it was exhausting! It was so worth it though! The guys are so appreciative of everything we do for them. It's really humbling to work with such great people. I was trying to find a link on tips for taking brain injured clients on outings but didn't have much luck, and then, I came across this article about tips for taking children to restaurants, and it seemed to fit the criteria perfectly, so click on the title to view them.

On a different note, I went to a conference today where I interacted in groups with either COTAs or OTs and it really is amazing how some people act like they are better than you just because they have a degree attached to their name. Don't get me wrong, I'm really only referring to one individual, but they had a big impact on my life today. You see, I was having a pretty good day until I had to be in a group with this person. I could go on and on, but I won't. Moral of the story: Treat everybody with dignity and respect and remember, he who knows the least, knows it the loudest.