Chocolate cake...

Since mother's passing years ago, I've tried to be sensitive to the needs of others in similar situations. For the past two years, I've been helping an elderly disabled widow so that she can remain in the home she shares with her single adult son.

My friend is unable to safely shower without assistance or accomplish certain tasks, like mailing packages, getting to the beauty shop, or picking up a prescription from the drug store. She can manage other tasks, like changing her bed linens, but it takes great effort and something I can do quickly and easily.

Today I am baking a chocolate birthday cake. The cake can cool while I change her sheets and help her shower, and together we will frost and decorate it to surprise her son on his 45th birthday when he comes home from work this evening. It's such a little thing for me, but huge for my friend.

From washing feet to washing hair...

Inflatable Hair Washing Basin
Unfortunately, the nursing home staff did not prepare me very well to bring mother into our home. They were not particularly supportive of our decision and provided only minimal help in arranging for our needs. Even though I was a trained professional nurse, I learned many things about caring for the disabled by trial and error, and one of those was how to wash mother's hair.

For a brief period after she moved in with us, home health nurses helped me with mother's bed bath 3 days a week, and once a week they used a dry shampoo on mother's hair. But in the hot and humid climate in which we live, dry shampooing was not adequate for giving mother the clean scalp and shiny hair I knew she desired.

Once again, I searched the internet for a solution and discovered this inflatable basin. It wasn't perfect. I still managed to get the bed wet in the process, but it enabled me to get mother's hair and scalp thoroughly wet for a good shampoo every week - and because I would shortly be getting mother out of bed and changing her sheets, the wetness was only temporary.

Though you cannot see it in the above picture, the basin had a 40-inch drain tube with a plug that enabled me to thoroughly rinse the shampoo out of her hair by draining the water into a bucket on the floor by the bed.

Every month or so, I arranged for a beautician to come to our home and give mother a good haircut on a morning after I had shampooed her hair. In fact, because I was unable to leave mother very often, we would often turn the kitchen into a beauty parlor and the beautician would cut my hair and Emily's hair, too.

Pretty in Pink...

During the time mother entered rehab and we moved her into our Pollywog Creek home, I became a bit annoyed with the nursing home staff when I noticed that mother's shirts were always on backwards. I never said anything, but I thought...how difficult can it be to put some one's shirt on right?

The first morning mother was in our home and I dressed her after her bath I discovered exactly how difficult it can be to dress someone in mother's helpless condition. It's one thing to dress a tiny newborn - though that can be difficult enough - but dressing mother was like dressing a 140-pound newborn.

After what seemed like a hour, with one of mother's arms in one sleeve and the rest of her shirt crumpled up behind her back, I gave up in laughter. Mother laughed, too, as I proceeded to re-dress her with her shirt on backwards.

Determined to find a solution, I discovered several online resources with clothing for patients with a variety of challenges such as mother's. It was obvious that she needed shirts and dresses with closures in the back and I had fun choosing a variety of dresses in colors she had never worn before - like pink.

A natural redhead, many of her long time friends had called mother "Red" as long as I could remember, and redheads do not wear pink, but mother had not been a redhead for many years and I decided to go for it.

I thought she looked pretty in pink - don't you?

A question in my mail box: "How can I encourage someone with a bad attitude who is caring for an elderly relative?"

"My grandmother has dementia, but physically she is healthy," my friend explained. "Because of her dementia, she lives with her daughter, but this has created a lot of stress for her daughter and she now has a bad attitude about taking care of her mother. I live too far away to help? Do you have any suggestions I could give to encourage her daughter?"

Bless her heart! I can only imagine the difficulty of caring for a person with dementia who is physically able to move around.

While caring for my mother had its own set of difficulties, she was physically incapacitated and it was like caring for a newborn who could not get up and walk away. The stress of worrying about where an elderly person with dementia might wander off, or dealing with a non-compliant or combative person with dementia must be very difficult.

This afternoon I had lunch with a very good friend whose circumstances are very similar to that of the person who asked for suggestions, so I asked my friend today how she is able to maintain a positive attitude while caring for her elderly mother.

1. Understand that it takes an anointing from God. Every morning she asks the Lord to anoint her for the task of caring for the needs of her mother and the rest of her family. My friend knows that she cannot do this without the strength and wisdom that comes from God alone.

2. Surrender. Along with praying for daily anointing, she daily surrenders her life - her plans, her desires - to the Lord. "You know the hymn 'I Surrender All'?" she asked. "That is what I have to do. 'All to Jesus, I surrender. I surrender all'."

3. Find help. My friend compiled a list of people she could call on to stay with her mother so that she could do other things from time to time - like go on dates with her husband, or trips out of town. When her daughter lived closer, she would watch her daughter's baby so that her daughter could get away, and then her daughter would watch my friend's mother so that my friend could get away. Now that her daughter has moved far away, my friend relies on her list of other people she can call. She also investigated community resources for respite care.

4. Find ways of making the elderly person feel useful. My friend's mother helps with the laundry. She can sort and fold clothes.

5. Be patient. My friend lets her mother do for herself whatever she can, even if it takes longer to accomplish the task. The more the person with dementia can do for themselves, the better they will feel about themselves and be easier to live with. It is also important for the caregiver to accept the quality of work the person is able to do with patience and understanding.

Often the person with dementia will make unkind comments and say things they would never say before they had dementia. That can be very difficult for a daughter. I asked my friend if she has learned to let those kind of comments roll off and not be so hurtful. She said that most of the time she can, but there are times that it isn't so easy and that is when she must constantly be taking it before the Lord in prayer and asking Him to protect her heart and mind and give her the ability to respond in love.

More suggestions can be found in Can You Carry the Burden.

I would love to hear from others who could offer words of encouragement.

Bed sores and a testimony

Earlier today I received this email from Jennifer:

I wrote you several months ago as we were building an addition so my father-in-law could move in w/us. He moved in the beginning of Nov. After just a week & a half, he was in the hospital with pneumonia. After 9 days, he came home...1 day before Thanksgiving. Things went downhill fast and I found myself checking his blood sugar (which my 8 year old son taught me how to do!! He had been watching his grandpa and was able to help me), giving him his medicines 4 times a day, filling his syringes with insulin (until the day came that I had to actually inject him!), and monitoring his breathing treatments. As the days progressed and my fil weakened, the day arrived when I had to clean him and care for him. God gives such grace for exactly what we need to do!

He was only home for 2 and a half weeks and then had to be admitted for internal bleeding. The high doses of prednisone he has been on for over a year have done their work.

He has been in a nursing home for several weeks now. We want to bring him back home. He is not alone. He does not need to be there. We can care for him, help him exercise, and do all that they have or have not been doing at the home. He also has MRSA and so the attendants don't go in unless they are gowned, masked, & gloved. He is very isolated there.

He is also one of the sweetest, politest, and uncomplaining persons I know. He does have a sore on his backside that we will have to care for. They also have him on a different steroid that is through an IV. I've been encouraging my husband that we need to be very proactive in asking questions and seeing what we can actually do here...more than what they are telling us right now, I am sure.

We are already getting questions from nurses and other people about why we would want to do this. Why not leave him in the nursing home where others can care for him? We tell them that WE are his family and he is NOT alone and we WANT to do this!! This was why we put on the addition! Granted we didn't expect it to come so soon, but it has and it is what God is calling us to do!

We believe that my fil has decided to come to Jesus for salvation during this time! I'm sorry I wrote so much. Wanted to share... I appreciate knowing some of what we
can do to help with the bed sores! Thank you!

Jennifer, please do not apologize for writing "so much". The testimony of your love for your father in law, and your family's desire to care for him at home is a beautiful one. Thank you so much for sharing your story with me. God does indeed give us grace for exactly what we need at the moment.

Don't be surprised if you continue to receive questions from those in the medical profession, and even family and friends, about why you would want to assume responsibility for your father in law's care, rather than relinquish that responsibility to the nursing home staff. There are many possible reasons why they would like for you to keep your father in law in the nursing home. Doctors like it because they can turn the day to day care of that patient over to the nursing home staff doctor and not have to be concerned about middle of the night phone calls from family. Nurses love caring for patients like your father in law who are kind and not demanding. The nursing staff is also threatened by family who question the care their loved one is receiving.

My advice to you would be to remain proactive in your questioning, but with gentleness. Avoid putting the nursing home staff on the defensive. It will only make it more difficult for you to get the information you need to bring your father in law home.

When I removed my mother from the nursing home, she had bedsores on both heels that the nursing home had neither acknowledged or treated, but Medicare provided several weeks of home health care that was initially very helpful. A home health nurse performed an initial assessment of mother's needs and then obtained the doctor's orders I needed for the treatment of those bedsores. Eventually they also helped me get an order for an alternating pressure air mattress to prevent the development of future bedsores. The nurses instructed me in how to care for mother's bedsores and provided the dressings until her bedsores were healed.

Bedsores are treated according to their classification. They are not all treated in the same way. You will need to ask your father in law's doctor to order initial home health care when he leaves the nursing home so that the home health nurses can instruct you in the particular care needed for your father in law's bedsores.

After mother's heels healed, I was very diligent in my care of her skin. I kept her clean and dry, and repositioned her often. I gently massaged her skin after her morning bath, and again before she went to sleep at night to stimulate the circulation to her skin. The alternating pressure air mattress was the best. It allowed me to sleep at night without having to wake up and turn her during the night. Mother never developed another bedsore.

You might be interested in reading what I wrote about how I cared for her skin here.

Jennifer, please stay in touch and let me know how you and your father in law are doing. He is so blessed to have you for a daughter in law.

Washing Feet

While caring for my mother, maintaining her skin integrity was a priority. As a professional nurse, I knew how easy it was to develop bed sores, as well as how difficult they can be to heal. After only two weeks in a nursing home, she was dehydrated, with dry, scaly skin, and had developed decubitus (bed sores) on both heels. It wasn't until we moved her out of the nursing home and into ours that we discovered the sores on her heels. Fortunately, with proper treatment, her bed sores healed, and I began a practice of massaging her feet twice a day. She never developed another decubitus.

My routine for caring for mother's skin, with an emphasis on pressure points included:
- Keeping her clean with daily baths using Dove soap with moisturizers.
- Rubbing her skin with moisturizers after her bath and at bedtime, massaging her back, heels, elbows and hands twice a day.
- Using clean clothing, pajamas and socks every day.
- Changing all bed linen every day.
- Keeping her hydrated. Mother never asked for anything, but she would drink whatever I offered her.
- Providing a balanced diet with adequate protein. I gave her an ensure every day.
- Using heel protectors. When she was out of bed and sitting up in her Geri-chair, I kept her feet in boots like these that were lined with lambskin and kept her heels from touching the chair.


- Changing her position to rotate pressure points. Mother was unable to change her own position. While she was in bed, I would turn her every two hours. During the night, the use of an alternating pressure mattress made it possible for me to sleep for several hours without waking to turn her. Using a hydraulic lift, I moved her from the bed to the geri chair after her morning bath. After lunch I would put her back in her bed and on either side for a few hours, to relieve the pressure from sitting in the chair. She went back to her chair before supper and then back to bed later in the evening.
-Keeping her cool and her skin dry. I had to be alert for her tendency in our humid climate to develop perspiration.

Can you help carry the burden?

Anonymous left this comment in The typical caregiver...

Interesting articles, I can relate to both in some ways. I am 38 have been caring for my 79 year old mother for the past 5 years and it's like my world has fallen apart. She requires a LOT of care and is somewhat un-thankful of all that I do for her. I'm not asking for an award or anything like that, but it would be nice for her to be pleasant and not order my husband and I around constantly.

Anon, I very much admire your willingness to care for your mom. I know that it must be very difficult. As I look at the difference in your ages, I am reminded that this is the exact difference in the age of my daughter and me, and I wondered if she will need to care for me some day. If she does, I pray that I will be pleasant and not demanding.

As a registered nurse, I encountered many patients with difficult and demanding personalities, and almost without exception, the nursing staff would avoid them if at all possible. What I have observed about older people is that they are often demanding because they are afraid or lonely. Avoiding them only increases that fear and loneliness. What we learned was that if we appeared more interested in them, checked in on them more often, or went out of our way to offer special care and attention, they would more often than not, become much more pleasant to work with, as well as less demanding.

Since I've been taking care of her-I had to cut my hours at work to part time, have to get by on anywhere from 0 to 4 or 5 hours of sleep a night, have had 2 miscarriages, been on a constant struggle at work(I've made mistakes and got written up), am no longer able to keep in contact with my friends, do not go out socially, worry about my husband leaving because we don't have much quality time together, my blood pressure and cholesterol levels have skyrocketed (I had to give up going to the gym), have gained weight, I also paint and am on the verge of giving that up completely because the only painting I get to do is at the expense of sleep.

Bless your heart - you really could use some help! This is one of those situations that I strongly believe the Church needs to embrace. Do you attend a church? If so, I would encourage you to make an appointment with your pastor and make him aware of your situation and needs. Many churches have a parish nurse on staff that help you connect with the resources - both inside and outside the church - that you need.

A Stephen Ministry caregiver might also be very helpful if your mother is receptive. If your church does not have a Stephen Ministry, find out who in your community does. A Stephen Minister is a lay person who can visit with your mom on a regular basis and provide friendship and a listening ear. One of my dearest friends, who works full time outside the home, has an elderly mother living with her. Now that her mother has a Stephen Minister visiting her once a week, her mother has been much less lonely and demanding on my friend.

Are there any adult daycare centers in your area that your mother could attend a day or two a week? At first, my father resisted going, but he quickly adjusted and looked forward to the days he was able to go.

Also, I have no siblings, no relatives who live close by, all I have for help is my husband, a visiting nurse who comes in once a week and a home health aide who comes twice a week who is NO help at all. What is a home health aide suppose to do? The one we have is slick, she figured out that if she comes after I've left for work the commode is already emptied and cleaned, her colostomy stuff is already cleaned (my mom has a bag and she empties the continents into a urinal several times a day)so all the home health aide does is give her a sponge bath and makes the bed. Sometimes she washes my mom's hair, we have a hose in the kitchen sink for that. The home health aide just takes the dirty dishes out of the sink, does her hair then puts the dirty dishes back in. I do not have time for dishes before I leave for work, I have the commode, the colostomy, get her breakfast, her meds, and so on.

Once I moved my mother into our home, I only had the help of my husband and children, as well. It is very difficult, I know. I also understand the strain on a marriage and though our marriage survived that season, I can look back and see that we should have taken better care of our relationship with each other, so I urge you to do just that. I am assuming that your husband is as willing to have your mother in your home as my husband was to have my mother here, but the situation places a huge burden on a marriage relationship.

My mother had very few monetary assets, but we made the decision early on that we would not be concerned with trying to save any of them. We used as much of mother's money as we felt necessary to provide the best care for her we could, and sometimes that meant taking care of us. I was fortunate to find an agency that could provide half-day care for mother so that I could leave the house from time to time. Even though it was expensive, it was worth it.

I had a friend who was willing to stay with mother so that I could go out of town, and my nephew and his wife also stayed with mom one weekend. I should have asked for more help from my friends at church, but I didn't want to impose. I know now that it would not have been an imposition. I was probably just too proud to ask for the help I really needed.

It sounds to me like you need to discuss the problems you are having with the caregivers that are coming into your home with the agency that is providing them. When my mother was first moved into our home, Medicare provided an aide 2-3 days a week, but fortunately, I was at home while they were here. All they did was give mother a bath and help me wash her hair once a week, but mother's care required two people.

I cannot imagine how stressful my life would have been if I had to work outside the home and care for my mother, too, but I had stopped working outside the home years before I became a caregiver to my mother. I believe that one of the reasons we are faced with this crisis in health care and the elderly is because so many woman with families have chosen careers outside the home and are now unavailable to care to for the elderly as in past generations.

That doesn't help anon, though, and I pray that I do not burden her with guilt for working outside the home. She desperately needs help where she is right now.

We, the church, must open our eyes to the needs of those around us. The bottom line in the headmistress' Love Thy Neighbor at The Common Room was:

"Christians ought to be a warm and vibrant part of that community."

She was comparing the difference between personal charity and government assistant to the poor and needy, but the same principal applies to those like anon who need help in caring for their elderly parents at home.

Can you imagine the impact - the evangelistic outreach - if every Christian family would provide even one hour a week, or half a day or day a month, of respite care or provide meals or housekeeping to a caregiving family in their neighborhood, community, or church?

There are woman just like anon all around us. We need spiritual eyes to see them, and the love of Christ to move us to action.

"Carry each other's burdens, and in this way you will fulfill the law of Christ." Galatians 6:2

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Quiet Care