The Love of a Caregiver Daughter

I had the privilege of interviewing an outstanding caregiver whom I had been corresponding with. My dog Ziggy and I were privileged to stay overnight with this couple. Over a breakfast of homemade biscuits Patricia said about her mother:

I was blessed with a great mother 

and I can do no less than care for her. 

She always tried to care 

for others in her family, 

selflessly giving even after she was disabled with leg fractures.

Her mother broke her hip and leg at age 84 requiring metal rods. Then 2 years later she broke the other leg in two places requiring rods and pins. Her resilience was amazing, but due to issues with blood pressure she began to lose her sight and have small TIAs. Then the dementia began as it often does in the 80s. Finally at 87 she had a stroke that paralyzed her left side and throat causing aspiration issues. Due to the extreme physical issues she was placed in a skilled nursing facility hoping for rehabilitation. Unfortunately a second stroke in rehab greatly reduced her ability to respond to therapy and today’s healthcare system discontinued the therapy due to lack of progress. 

This was a very stressful time for Patricia because she felt so helpless. She knew her mother didn’t qualify for therapy,  but without it she would just lose the existing strength and rapidly cycle downward. How do you watch a loved one lose their dignity and connection to reality? Her mother had good days where she was alert and realized that she was not getting therapy and therefore she had little hope of regaining function of her body and returning to her home. It is difficult to see a loved one lose their spirit and will to live. The 88-year-old mother also had a son, but he was not in a position to help. 

So for four years Patricia worked four days with the schools and then drove 3 and 1/2 hours to stay with her mother Friday through Sunday—so her mother could stretch her finances needed to pay around the clock caregivers allowing her to remain in her own home. Patricia said it overtook her life for those four years, greatly impacting the quality of her other family relationships especially the special time to share activities with her husband during their golden years together. She said that she always felt guilty trying to meet everyone’s needs at the same time and never doing a good job anywhere. Her mother had to pay $35,000 a year for Monday to Thursday caregivers when Patricia was not there during those four years. After the first major stroke her mother’s needs increased but Patricia was exhausted also. She had also developed physical ailments from helping to lift her mother over the last 2 years and now her mother would not be able to assist with any position transfers to prevent bed sores.

Something had to give. She was moved to live closer to the couple. They decided to have her dentist husband  hook up oxygen to create a sort of  SUV ambulance to move the mother to a nursing facility in their home town. The original plan was to receive therapy until she improved and could then assist with transfers and limited caretaking within Patricia’s home. Unfortunately, her health continued to degenerate and she was unable to make any physical progress. Now Patricia is able to visit her several hours a day and still have a life with her very understanding, caring husband.

I asked Patricia how she was able to sustain this selfless care giving for four years and even now going to the nursing home every day. She said,

I just do it.

I stay in the moment.

Then I’ve also let go of some 

other moments or expectations for my life.

I don’t look at it as an intrusion.

I know that once she is really gone

 I can’t touch her again, 

so for now it is all worth it.

Caregiving the Final Year

I had discussed the options of nursing home care and in-home Hospice care with a counselor at the Alzheimer's Association. I decided on Hospice. My husband could stay at home and since I could resign from my jobs substituting in public schools it was THE solution, rather than a nursing home. It was most comforting to have hubby at our home, as his decline was very rapid as chronicled on this blog.

NOT WALKING. A year ago hubby woke up not being able to walk. He hadn't fallen and I thought it was that arthritis and not a broken leg. A knee brace had been used for a time.  However, in hindsight, his not walking was all about dementia and the plaques and tangles taking over another part of the brain. Our chiropractor gave him increased mobility, but in the end that part of his brain that enabled walking didn't work.

I realize that not everyone is able to keep the loved one at home, but someone has to live with them.  Some dementia patients are difficult to handle because they are angry and their filters for normal social behavior are missing.  Or some wander away from home.  Some turn the stove on and forget they did that and risk burning the house down. My husband didn't cook in the past few years and didn't wander. My husband relished being "normal" and I treated him normally as my loving husband, learning to talk simply to him and always saying "I love you" at least once a day. It worked for us. He had a good disposition and just loved watching TV and enjoying his DVD collection. We both loved our home. I would keep busy, but not really concentrate on the TV he was watching.

Hubby in hospital bed at left;
dog Ziggy on my twin bed. 

HOSPICE decision. We took out the king-sized bed in the master bedroom, the Hospice hospital bed was moved in and I slept by hubby in a twin bed pictured. Our dog Ziggy moved between our beds. I learned from Hospice that hospital gowns at home are made by cutting the back of a T-shirt up the middle but not through the top ribbing so they would stay on; this made it easy to change their top. By this time my husband was bedridden and using adult diapers.

Handy dining room cart moved to bedroom

TV, bomb box and cart for supplies

Hospice needs a station to do their work. I used a cart from the dining area and moved it to our bedroom. The "Depends" type products were stored on a chest nearby. Near the end of Hospice, a Home Health Care Aid came every day and I actually learned to change my husband's diapers and he never got a rash. The nurse who came when he died noted that he had been well cared for. He was loved and made to feel normal.

My dear husband knew he was dying and told Kenny he was ready to stay in bed -- he had had enough of moving from the Geri chair to the bed. He would tell Kenny things that he didn't tell me, because he needed to feel normal around me I think. Kenny was his buddy--not a volunteer caregiver in my husband's mind.

I believe that Hospice in the home is a great way to take care of our loved ones. They are most comfortable at home. Look at this wheel with all the services Hospice provides.

Support groups and other help. An Alzheimer's Association support group is most helpful. We caregivers need support. We HAVE to get respite. People were always with my husband when Hospice was called in. I went to the grocery store when the Home Health Care Aid came, and went to church when someone was here. For months I had been contracted to teach three classes and someone was with my hubby for many hours those three days. I had to ask for that help from friends.

When hubby went downhill I started taking 10 MG of the antidepressant Paxil that I will get weaned off of hopefully when I see my doctor in September. I tried to stop because it is non-habit forming, but that was a mistake and I needed them to maintain my hormone levels and an acceptable mood. Then l read where you need to get off Paxil slowly. I have had two counseling sessions--one with the Alzheimer's Association and one with Hospice. Neither of these appointments cost me a dime. Both counselors also advised me to taper off of Paxil slowly.

TAKING CARE OF ME.  Many caregivers pass away before their loved one dies because of the stress perhaps--maybe 60% I have read somewhere. The grief added to years of caregiving can take a heavy toll. I am finally taking care of me. I went to the dentist this week and before my hubby died I had someone at the house so I could keep my mammogram appointment that had been scheduled for a long time. I am going to Weight Watchers again--glad that I didn't gain all the weight back that I lost in 2012. I think some of my gaining back weight was that ice cream that hubby and I enjoyed together--one of the last things he would eat. I have not had ice cream since he died--it would cause a grief burst to have ice cream.

I am both relieved and grieving and need more sleep--even dog Ziggy needs more sleep.  I am trying to get out and about and do things that bring joy to my life. I am discovering what works for me, glad that I can still do things.

I am going to a grief support group. Hospice has them, but I am going to a thirteen-week grief group with my friend Sally at her church. We are using Grief Share: Your Journey From Mourning to Joy, published by Church Initiative, P. O. Box 1739, Wake Forest, NC 27588. It has a manual with homework and also a video that the facilitators play in class. Tonight is my second session.

Today I go vote and I am less prepared to vote than I have been in the past. I started to watch the Emmy's last night and realized that I did not know these TV programs up for nomination.

THIS BLOG WILL CONTINUE.  Stay tuned. I am writing a seminary counseling dissertation on dementia caregiving and then finding a publisher for the popular version of that manuscript.

You have turned my mourning into joyful dancing.

You have taken away my clothes of mourning 

and clothed me with joy,

that I might sing praises to you 

and not be silent.

O LORD my God,

I will give you thanks forever. 

Psalm 30:11-12 New Living Translation

Interview of Karen, Caregiver for Her Mom

Karen and Her Mom

When Karen sent me two pictures, she said that even after taking care of her mom who had Alzheimer's the last years of her life, she can only remember her mom as happy. At the bottom is one of her parents she says--"happy times". 

Karen and I met somehow in the Alzheimer's caregiver blogging world. She would write on my blog and I would write on hers. She always seemed so lovely and was willing to let me interview her.

Carol: How long did your mother have Alzheimer’s and how did you come to live with your mom?

Karen: In total I believe that Mom had Alzheimer’s ten years or more while we lived with her. I was 4 months pregnant with my son when my dad died and she went right into baby-sitting. I got a divorce when my son was 4. Mom babysat for me while I worked and my son loved her so when I divorced we got our own place but my son wanted to stay with Mom. I figured why pay rent! Why not stay with mom all the time! So we moved in with her. She told me once that my son saved her life. She said she would have died without my son to care for! Mom and I were best friends. It was perfect. I did not date until after my son was in college. I just was so content with our life.

I drove a School bus and worked in the school kitchen when my son started school, so we would have the same hours. He rode a different bus than mine and Mom would be on the front porch at 3:00 waiting for him everyday. When he started middle school, I started driving a transit bus full-time for more money. I did that for three years. That is when mom‘s Alzheimer’s started.

As she got worse, my son would come home from school and find her walking down the street or at a neighbor’s house and not really remembering why she was there. As he got older she was not eating, not bathing and hoarding stuff in her room. She called my brother and sister all day and me at work over and over. My sis worked nights but she started coming over to care for her in the day while I was at work.

Anyway she got worse and worse. After months and months and years of decline she would not get up to go to restroom or do anything for herself. I would get up at 4 am to have her ready for my sis to come in after work to care for her.  Then I would go to work. That was not working for anybody. So I went back to being a part-time School Bus Aid. It just got worse. My sis was wearing down working nights and here during day and I was too from being here the rest of the time and working. My brother helped when we asked and he tried hard, but he is a guy and he felt awkward with Mom’s personal needs. He had to work too. Finally I gave up and became her full-time caregiver.

Carol: So the caregiving role just developed over time and anyway you were living with your mom. Your relationship with your mom seemed so mellow.

Karen: The reason our relationship was so mellow is that I am the baby of the family and my dad was a truck driver—we were used to each other and my sis and brother were grown and gone seems like forever and it was just she and I. We were best friends. I wanted to be with her more than with my girlfriends.

Carol: As the situation changed with the Alzheimer’s entering the picture was it hard to maintain the mother/daughter relationship?

Karen: Over time I lost the daughter mom dynamics. I went from daughter to caregiver. I regret that. I bossed her around so often and now I try to remember if I gave her any loving and did I talk to her in her last stages?  Or, did I just go through our routine of sleeping, eating, bathing, getting out of bed?

Carol: How long did you take care of her full-time after you quit work?

Karen: About four years at the end of her life.  

Carol: You didn’t seem to have much of a break in your caregiving from what I can tell on your blog. Was it stressful?

Karen: I remember sometimes I would be so stressed I would get in bed with her and lie beside her and just cry--wanting some love from my mom. But I don’t' think I gave her enough love.

Carol: Why do you say that?

Karen: Mom became like a child, and then a nothing--she was just there. NO words--never moved. I had to do everything. I hope your husband stays hard to handle because that means he is still “in there”. Hard on you, Carol, but better than his not responding to you anymore, I think.  Your husband might be hard to handle but he still argues and talks back to you a little so you know he still is thinking about stuff.

Carol: I am still fortunate after five years. We do talk and he tells me he loves me and I tell him I love him. Our routines are getting past the stubbornness. He is really not hard to handle, and I do have a volunteer caregiver neighbor who helps out when he can.

Carol: What was it like—switching roles?

Karen: At first she was very independent as far as paying bills and handling her money. She wanted to keep taking care of money matters, but she was writing checks wrong and not keeping up with the bills or losing them. So that was hard. I had to ask her, Mom, do you want me to write the checks for you? And at first it was no then later not now and then she would say later for like months. Then she got to where she would say yes. She always had to have lots of cash in her purse but was losing it. She would want to get $500 out of bank every month but not take care of it. She could not drive. Never did so and that was a blessing because someone would have to take her to the bank. We finally talked her into just getting $200 out. Very slowly she would give in to letting me do more.  As the disease got worse, the more I could do for her.

Carol: I have taken clues from others. I happened in our case that when I retired from full-time teaching, my husband fortunately turned finances over to me because he would work for another year. I still compliment him for the fine budget spreadsheet he set up that I follow. He caught me on-line banking and so I write very few checks. At times he asks to be informed. Also taking clues from others in the blogging community, my husband still has a wallet, a driver’s license that he doesn’t use and a key to our car.

At one time you placed your mother in a nursing home. What happened to bring her home?

Karen: We could not pay for another placement. She had too many assets according to DHS and not Medicaid to pay for bills--just Medicare. We lived paycheck to paycheck but she had two houses and they had to be out of her name for 5 years before she would be able to get Medicaid. If she had only had the one home I think she could have gotten it. But one house was rented and so we would have had to sell it and use up all that money before help. She did not want to sell it. It is a long story but she gave it to my sis. And she gave her house to me. But not on paper--just in the will. First thing we did wrong was not to get the titles transferred officially. It is hard but you need to explain to your parents that everything has to be out of their names and in yours for over 5 year now for them to get any government help. And if you are not rich, you will need help or have to live paycheck to paycheck like us. I cashed in my IRA and teachers retirement to pay off any outstanding bills and we used her and my savings as we went along when her Social Security check was not enough.

Carol: Name some extraordinary stress you encountered living this way.

Karen: She got so hard to care for that I bought a van with a wheelchair ramp and took her into see doctor for years, She would yell and scream and it got harder and harder. They put her on Alzheimer’s meds to slow it down and she was in the early stages for years with slow changes.  The mid stages were about 3 to 5 years.  The last stages were around 2 more years. But it was awful. We had to do every thing for her she did not help to do anything anymore. My cousin said to ask for Hospice to come to house. I said, No, she is not ready to die. My cousin said they would come if her doctor agrees with it and she does not need to be near death. Well I asked her doctor and they called Hospice.

To keep Hospice there has to be a decline in a patient every 3 months. Well it was slow but she did decline some. And hospice was so nice and wanted to keep coming. They paid for everything--all her needs. All I had to do was buy food. Thank goodness for them. It was great. They did take her off blood pressure and Alzheimer’s meds but she was never in pain--they made sure of that. She had Arthritis really bad so they kept her pain free. They came twice to 3 times a week depending on her condition. She would have a bad day or week and they would ask me if I wanted them to take her to hospice,  but she would come out of it. This happen at least 3 times in the almost 2 years they were coming.  But then she got Aspiration Pneumonia. Everything she ate or drank went in her lungs. She was choking on everything. They gave me options to take her to Hospital and she might get better but she would no longer be on Hospice or I could send her to Hospice and they would make her comfortable and let her go peacefully. I gave in and we took her to Hospice. It was awful. She was so sick. And I was so tired. I just needed sleep. The first night at Hospice I sleep on sofa all night. First all night sleep I had in years! The next day they said she coughed all night and I told them I did not hear her cough once. Can you believe it!  I slept though her coughing all night. Not good.

When she went to Hospice she had no pressure sores. I worked so hard to keep her turned and clean. I was so proud. That is the only thing I am proud of. I was not nice enough to her, I felt—it was just so hard. I just changed her diapers got her up, dressed, and fed her  like a robot . We had a routine and it never changed except on the days the Hospice Aid or Nurse would come.

Carol: Looking back, what advice would you give someone taking care of his/her parent with dementia?

Karen: If you are going to care for a love one fulltime, have the finances in order. Call an Elder Attorney. Ask for help. Get all the info you can get. And if you can, try not to be the fulltime caregiver.  Be the daughter or son and let someone else be the caregiver. I believe if she had been in a nice assisted living home, I would have loved to come visit her as a daughter--never a caregiver.  It would have been wonderful to have someone able to care for her at home while I worked. We could all be her kids and she our mom. I missed all the years we could have had in the later years because I was her caregiver and not her daughter. You can't get them back.

Carol: Since your mother died, was it hard to get back into the work force?

Karen: I used my recent experience. After she died I went to Lifestyles to work. It was working with people who have disabilities. All ages. I just helped them live on their own. I took them shopping and out on the town.  I helped them with chores or just ran errands. I did that for the first year, but I needed to get away from caregiving all together. I am a Courier now. I am driving again. I love to do that. I run in and out of clinics and banks picking up and dropping off stuff to them. Love it.

Carol: What a pleasure it has been to hear your story! You were an awesome daughter and maybe didn’t give yourself enough credit for the difficult job you had. Your advice is timely for others who read this blog. Thanks so much, Karen!

One of Karen's Favorites of Her Parents

 

Interview With Jean Milsop, Caregiver

I met Jean this summer in a class. This energetic 83 year old buried her husband Jim of 64 years last March. They had a wonderful marriage, raised a boy and girl together, enjoyed grandchildren, but the last 20 years saw his decline from Parkinson's Disease, a form of dementia with its unique characteristics where the muscles deteriorate. Why I wanted to interview Jean became evident. Here is a vibrant woman who survived and has much wisdom to impart. I was privileged to review her book, Taking Care and Letting Go: When Your Loved One Must Move to a Nursing Home. It may be out later this year. Today we had lunch at Reececliff, a famous Lakeland, Florida Restaurant.  My interview went like this.

Carol: I can so identify with the Pity Party that you write about in your book. For me this pity party has taken the form of emotional eating. How did you deal with the pity party? 

Jean:  I let myself have one, but only one. I am glad you liked that chapter.

Carol: Give me examples of how you learned to be patient.

Jean: During my morning walk I cleared my head and asked God to get me through the day.

Carol: How many years did you care for Jim at home?  

Jean: In February of 2008 he went to the facility so I believe it was sixteen years that he was manageable at home.

Carol: Were you in a support group or did you have people who came alongside of you during this journey?

Jean: No. I did briefly join a grief group after he passed away. Now I do meet with two friends whose husbands have beginning Alzheimer’s to encourage them on their journey.

Carol: Just as you are doing encouraging us all with this interview. What was the process of choosing a nursing home? 

Jean: I interviewed three. I was able to choose one that was close to my home that had good ratings.

Carol: How were you able to cover the huge expenses of a facility without losing your shirt so to speak?

Jean: Jim had been in the hospital for three nights and the hospital social worker got him into the facility. Insurance covered the first month. He was then evaluated and approved for long-term care through Medicare.   

Carol: How did you handle moving "home" to that facility? What did you bring there?

Jean: We just moved clothes, his TV and his radio. I got him new clothes such as pants with elastic waists. Every night I would then put out his clothes for the next day before I left the facility to go home. The certified nursing assistants (CNAs), he told me, always said how nice he looked. This made him smile. 

Carol: Did Jim go downhill after he was moved there as some of us fear?

Jean: No. He actually improved for a few months because of the daily physical therapy he received there.

Carol: You speak in your book about "being an advocate". What are specific examples of times you needed to intercede for Jim at the facility and how did the staff handle your possible "interference"?

Jean: They were very cooperative. One time we couldn’t get the baseball channel he wanted and I went right to the administrator and complained. It took three months, but he finally got his channel! Quarterly they had Care Plan Meeting with me to discuss his care, progress, decline or whatever my concerns were.

Carol: I would feel so guilty if or when I might have to place my husband in a facility. I want him home with me all his days. How did you cope? You obviously believed "'til death do us part" as I do. Did Jim object to leaving your actual home? 

Jean: In the beginning he was miserable, but after a while he adjusted. When I had to take him to the doctor, he was confused until he could get back to his room and his routine.

Carol: You were so limited when he was at home. Was part of the guilt suddenly having time for activities away from him while he was in the facility? 

Jean: Finally I could get a good night’s sleep.

Carol: You have a chapter on receiving support from family. I have had that support with a respite cruise last year, and the Alzheimer's Association has offered respite to my friend Sally. Did your children come along side of you in this caregiving of their father? 

Jean: They live out of state and have their own lives and family. We always love when they came to visit. My son is flying into town next week and of course it will be great to see him.

Carol: He needs to give you a big hug for how you have handled these past 20 years of your life. You are such an inspiration!