This is the story of my mother, Mama Hawk, and our journey through her elderly years with Alzheimer's disease.
I would like to thank my husband and my siblings for their support throughout this journey. Support comes in many forms – emotional, financial, running errands, cooking, cleaning, listening and sometimes just agreeing.
The intent of this website is to provide guidance and hopefully make your journey a little easier. You are invited to share your comments at Join the Conversation.
Our journey started July 2007. Mama Hawk was 80 years old. Looking back now, it actually started way before that but I was not aware of the signs. I thought it was just "old age". For those of us that see our loved ones on a regular basis, it may be difficult to see the signs. I myself had a rude awakening when Mama Hawk went to visit my siblings. Although she was accompanied on her travels, the trip took her out of her daily routine and it was obvious that something was wrong with Mama Hawk. Some of these signs were:
When she returned from her trip, we went to see her primary care doctor. He asked her some questions like:
Mama Hawk was not able to respond to the questions. She shook her head and said yes but couldn't answer the questions. The doctor said "you have dementia and can no longer live on your own". She looked at me with tears in her eyes and said "What am I going to do?" I said "I'm moving in with you and that's that". Now if you knew Mama Hawk, you would know that she does not cry. She was the strongest woman I knew so this just broke my heart. Then the doctor said "Oh and by the way, I have to report this to DMV so you can't drive any longer".
We left, I moved in and thus our journey began…
Mama Hawk had a Power of Attorney for Healthcare that appointed my brother health care agent. My brother no longer lived in town so we executed a new Power of Attorney. It's extremely important to have these documents or you will not be able to speak for your loved one. I searched the internet and found that we could purchase the templates needed for about $10 each. We completed the following documents:
#1 & 2 required 2 witnesses to sign. The witnesses could not be related to Mama Hawk. #3 Power of Attorney (POA) for Financial Matters needed to be notarized. I found that there are notaries that will come to your residence, so you don't have to go to their office. The Healthcare POA should state whether or not the party wishes to be resuscitated. If they do not, this is known as "DNR" (Do Not Resuscitate).
Another form I was required to complete numerous times on our journey was Mama Hawk's medical history. This included allergies to any medications, past surgeries and family medical history. I found it best to keep this list on hand along with a current list of prescription medications and copies of insurance ID cards.
Mama Hawk told me "you need to find a place for me to live quickly". She said "check out those 2 nursing homes down the street" and so I did. I visited the facilities and learned that since these were skilled nursing facilities, Mama Hawk was not eligible to live there because she was not physically or medically ill so insurance would not cover the cost. So what's the difference between Assisted Living and Skilled Nursing? An assisted living facility is a place where residents (note that in assisted living facilities, they are residents not patients) can receive assistance in daily living, but are capable of handling most daily activities on their own and do not need constant care. A nursing home is a place of residence for people who require constant nursing care and have significant deficiencies with activities of daily living.
Next step, search the internet for assisted living facilities in the area and begin visiting them. I didn't make any appointments, I just stopped by. I observed the following:
After observing, I met with administration to find out the specifics like cost, room availability (some have waiting lists), utilities included in cost (telephone land line, TV cable, internet).
I narrowed down the list to 2 facilities and then made arrangements to take Mama Hawk to visit the facilities and have lunch. Mama Hawk did not have much input so I asked one of my siblings to come to town and offer his input. He visited the 2 facilities and pointed out something I hadn't noticed. At 1 facility the resident's rooms doors were open all the time and at the other facility they were closed. The open doors gave a feeling of warmth and family and we chose that facility.
Mama Hawk moved in July 1st 2007. Before she could move in, all of her belongings needed to be labeled with her name since the facility handles the laundry and items sometimes get moved from room to room by residents. The day before Mama Hawk moved in, I moved her belongings, decorated her room with photos and wall hangings and made her bed with her own comforter set. So when she arrived it looked like home and she felt comfortable and happy.
Unless you have long term care insurance, assisted living facilities are private pay. Medicare/Medicaid (Medi-Cal is California's Medicaid program) does not pay for assisted living. Thank God that I am 1 of 5 children and we were able to share the costs. Mama Hawk's only source of income was social security which was approximately $1,000 per month. The cost of the facility at this time was $2,500 per month.
Mama Hawk's primary care doctor referred her to a specialist for her dementia. This doctor was 40 miles away. We met with him and he explained that he was going to give Mama Hawk a test (Mini Mental State Examination or MMSE) and that I was going to go into another room and take a test as well. When I returned, Mama Hawk asked me how I did. I said "I got 100" and she said "Smarty Pants". I said "How did you do?" and she said "I flunked". The doctor did indeed confirm that she flunked. He said she had signs of Alzheimer's and most likely had it for at least 5 years. I said "Wow I must be a bad daughter". The doctor again confirmed that yes I was a bad daughter. Really? We left and Mama Hawk told me she didn't like that doctor and I agreed. We never went back. However, Mama Hawk did begin taking a new prescription for dementia called "Namenda". I began my research on Alzheimer's and found there to be various stages or levels of Alzheimer's including the following:
When Mama Hawk first moved into assisted living, she was at level 1. Mama Hawk resided at the assisted living facility for 5 years. Over this period of time, her Alzheimer's progressed and so did the level of care required and the cost of the care. When she reached level 2, she was moved to another building that required security codes to get out the door to the outside. This was for her safety as she was now in the wandering stage. The cost increased an additional $300 per month. When she reached level 3, the assisted living facility informed me that the cost would be increased again to cover the cost of adult disposable briefs unless I wanted to supply them myself. I calculated the cost and it was much less expensive to purchase these supplies myself. I found Walgreen's prices to be the lowest if purchased on sale and you could purchase on-line and have them shipped for free. There are 2 types of adult briefs, one is a pull-up and is called "underwear" and the other is called "fitted briefs" that has tape on the sides. Both come in varied sizes.
At this time, Mama Hawk was still under the care of her primary care doctor that she had for many, many years. Doctor appointments were to say the least, a hassle. Sitting in the doctor's office waiting room with Mama Hawk asking me the same question over and over "Where are we?" Then one day while visiting Mama Hawk I saw a doctor visiting the residents at the assisted living facility. I spoke with him and found out that he visited the facility on a regular basis. WOW – Great! Isn't this something the facility administrator might have mentioned when we moved in 3 years ago? We immediately switched Mama Hawk's primary care to this doctor (my life saver). This doctor truly cared for his patients. He was not local – he traveled 40 miles to visit them.
During our 1st meeting with the new doctor, he asked if Mama Hawk had been married to a veteran who served during wartime. I said yes and he handed me some information regarding benefits that may be available for her. Veterans and their widows are eligible for benefits to help pay for long-term assisted living care. These benefits are referred to as Veteran's Aid & Attendance Pension. The process for applying for benefits is extremely long. I filed Mama Hawk's claim In April 2010. The claim was denied in August 2011. The appeal process began in December 2011 and is still pending.
Mama Hawk began to have seizures. Prior to this, she had no history of seizures. Come to find out, seizures are a symptom of Alzheimer's.
Mama Hawk was still walking so the seizures resulted in many trips to the hospital ER (emergency room). Mama Hawk was transported to the ER by ambulance. We learned that if the patient arrives by ambulance, they are attended to much faster than being transported by a family member. Not to say these ER visits were quick because they were not, 5 hour minimum, 8 hours if being admitted. I kept an ER bag readily available with items, like books, magazines, snacks, water and a jacket (ER was always cold). ER staff will always ask for list of prescriptions, medical history, insurance cards and patient code status for resuscitation.
It turned out that Mama Hawk's seizures were controllable by medication if taken as prescribed. Although assisted living facilities can administer medications, they cannot force the resident to take them. The assisted living facility in which Mama Hawk resided also had to have the family's permission to crush the pills into food. At first Mama Hawk's seizure medication, Dilantin, was in pill form. Since she was not always swallowing it, the doctor changed it to liquid form which seemed to work much better.
Mama Hawk had her prescriptions filled locally for a 90-day supply to save money. The assisted living facility recommended that we change the pharmacy to the local one that delivered for free and also provided "bubble packs." These bubble packs (also referred to as blister packs) contain all pills needed for that day & time for 1 month. The bubble pack makes administering the pills much easier. However, I found that the bubble pack was not covered by insurance and cost $10.00 per month. In addition, since the pack was monthly, we could no longer get the 90-day supply at the reduced rate. Also, the bubble pack does not list the medication names/dosages, so it is difficult to administer when medications are changed. Since you cannot take the prescription bottles to the doctor/hospital, it is extremely important to keep a current medication list. Periodically I requested a list from the pharmacy, the assisted living facility and the primary care doctor to compare.
After numerous falls, Mama Hawk's doctor prescribed a walker to aid her in walking and keeping her balance. Since Alzheimer's patients do not have the ability to learn new things, Mama Hawk was not successful with the walker so the doctor ordered a wheelchair. Mama Hawk was still able to get out of the wheelchair so for her safety the doctor ordered a "lap buddy". The lap buddy kept Mama Hawk safely in her wheelchair.
The doctor that visited the assisted living facility was able to order many lab tests in-house. However, there were still times that Mama Hawk was required to go to an outside facility. Since Mama Hawk was in a wheelchair, we faced the challenge of transportation. The assisted living facility did not offer medical transportation. I searched for medical transportation and found numerous companies. The one that we chose picked Mama Hawk up 30 minutes prior to the appointment time and dropped her off at the doctor's office. I could ride with them or follow in my vehicle. They did not wait during the appointment. When the appointment was completed, we called the transport and they picked Mama Hawk up within 15 minutes. This company accepted Medi-Cal.
Some of Mama Hawk's ER visits resulted in being admitted to the hospital. Mama Hawk could not speak for herself so I needed to be present to oversee her care. Since I was never sure when the doctor would make his rounds, I camped out in Mama Hawk's room. Luckily, my employer allowed me to work remotely. I learned that the hospital had free internet access if you asked for the access code.
While in the hospital, Mama Hawk was under the care of the hospital doctor not her primary care doctor. On one of these occasions, the hospital doctor recommended that Mama Hawk be discharged to a skilled nursing facility instead of the assisted living facility. I learned that after 72 hours of a qualified hospital stay, Medicare will pay for a skilled nursing facility for a specified amount of time. I was provided a list of 3 facilities and advised to visit them and choose one. I visited the skilled nursing homes on the list and each time could not picture Mama Hawk living there. There were patients in beds lined up in the hallways with no one attending to them. After visiting the 3rd and final nursing home on the list, I sat in my car in the parking lot of the nursing home and cried. What was I going to do? I drove to the assisted living facility in which Mama Hawk resided and explained the situation. The administrators informed me that Mama Hawk was welcome to come back and that they could care for her. Mama Hawk had raised me to "trust" the doctor so I hadn't questioned him when he told me Mama Hawk needed to go to a skilled nursing home. I returned to the hospital and had a conversation with Mama Hawk's doctor. She was discharged back to the assisted living facility.
Mama Hawk now required help with feeding and wore a "clothing protector" (adult bib) at meals. The cost of the assisted living facility increased to $3,000 per month. I now planned my visits during meal times so I could assist with feeding. This made me feel useful as I sat at the "feeding table" with other residents and their families. While conversing with other family members and staff sometimes Mama Hawk would give me "that look" like "what are you talking about" or "you're crazy". I came to realize that Mama Hawk understood the conversations – she just couldn't talk. Lesson learned: don't talk about them in front of them; they understand and as Mama Hawk would say "that's just rude".
In 2011, I unfortunately attended many funerals. As I sat at each one listening, I thought "I should do that at Mama Hawk's funeral" or "I would never do that". Then one day I received a postcard in the mail referencing Pre-Planning Funerals. Normally I would have tossed this in the trash as junk mail but this time I contacted the funeral home. The lady I spoke with was very informative and compassionate. I met with her and reviewed all the details including cost. I discussed with my siblings and as usual they were very supportive. So I signed the contract and paid for the funeral arrangements and then provided all the details including pictures & music for a DVD, choice of prayer card, obituary and more. It was much easier to make these decisions prior to death when I was focused and level-headed.
I honestly thought from the day Mama Hawk moved into the assisted living facility that she would live there for the remainder of her life. The reason we chose this facility is that it had 3 separate buildings – assisted living, dementia and Alzheimer's – so they would be able to accommodate Mama Hawk's varied levels of care. So imagine my surprise when the administrators of the assisted living facility called on May 15, 2012 to inform me that they were unable to care for Mama Hawk any longer and suggested a skilled nursing facility. WHY? She was not aggressive, she didn't speak or walk. The only thing that had changed was that she had stopped eating. She would drink juice and a protein shake and eat ice cream & pudding. One of the facility administrators said that they were only licensed for a certain number of "hospice" residents and that they were already at the maximum. But Mama Hawk wasn't "hospice". Did they know something I didn't? Why wouldn't they be straight forward and communicate with me? I never received a straight answer from the facility. I contacted Mama Hawk's doctor and he said Mama Hawk could move to another assisted living facility and he would continue to care for her even if he didn't already visit that facility. Mama Hawk was now 85 years old.
Two days later on May 17th, I visited Mama Hawk and spoke to another administrator of the facility. I did not gain any additional knowledge of why Mama Hawk had to move out but they did refer me to a skilled nursing facility. As a matter of fact, they told me that the admissions person from the skilled nursing facility had visited the assisted living facility and "diagnosed" Mama Hawk to see if they could take care of her. Really – I was not informed of this. I called the admissions person from the skilled nursing facility and he was very informative. He told me that Mama Hawk could move in as soon as she was released from the hospital under Medicare. I told him that Mama Hawk was not in the hospital or going to the hospital and asked if she could just move in directly from assisted living. He said yes if we could pay $6,000 per month. No we could not afford that. I told him that Mama Hawk also had Medi-Cal and he said she could move in directly from assisted living under Med-Cal but it would be best if she came from the hospital (after the required 72 hour stay) under Medicare and Medi-Cal. Mama Hawk had brought me up to never take advantage of the "system" so I had a difficult time with this concept. Why would we go to the ER if not needed?
The next day I visited 2 skilled nursing facilities. Now if you recall the beginning of our journey, Mama Hawk had told me "check out those 2 down the street". So I did. Both of these facilities met our standards. I continued to research skilled nursing facilities, asking coworkers and friends for their experiences. Come to find out, there are many people out there on this same journey but they don't talk about it…until you ask.
On May 23rd, 1 week after being advised that Mama Hawk needed to move out, I received a call from the assisted living facility advising me that Mama Hawk was not well and needed to go the ER. As I had for the past 5 years, I told them to call the ambulance and I was on my way. After 4 hours in the ER, the doctor said the good news is that Mama Hawk's fine just a bit dehydrated so I am admitting her. (The symptoms that the assisted living facility reported seemed to have cleared up – hmmm…) Tears ran down my face for 2 reasons: 1) nothing was wrong with Mama Hawk and 2) this was the start of our 72 hour stay required for Medicare.
The next day was full of tests and while I was sitting in Mama Hawk's room, I was handed a notice by one of the case workers. Nothing new, they are always handing out some kind of paperwork. This notice stated that Mama Hawk had been admitted "under observation" and this did not count towards the required 72 hour stay for Medicare. Really? I was advised that Mama Hawk would be discharged the next day which was Friday before a holiday weekend. I worked with the case worker at the hospital and asked her if she could find Mama Hawk a bed at a skilled nursing facility under Medi-Cal. The case worker asked if I had a preference of facilities and I gave her the names of the two I had recently visited. She contacted them and informed me that Mama Hawk's Medi-Cal benefits had expired on May 1st. Are you kidding…could this really be happening? I had completed the Medi-Cal renewal paperwork on time like I had each year prior. I contacted Med-Cal and was informed that they could not speak with me (but they had in the past) and they asked if Mama Hawk was available to give her authorization. I informed them that yes Mama Hawk was right there in the hospital room with me but that she could not speak. I told them that they should have a copy of the POA in their files. They said yes they did have it but that was not acceptable since it was not on "their" form. However, they did advise me to check the mail for a letter that had been sent out that week. I immediately left the hospital to go home and check the mail. There was a letter from Medi-Cal stating that Mama Hawk's benefits had not been renewed because records showed her assets were over the dollar limit. The "asset" they referred to was a 1985 Chrysler Lebaron. We had sold this vehicle in June of 2007 when the doctor had informed Mama Hawk that she could no longer drive. I prepared a letter along with copies of the DMV paperwork reporting the sale and faxed it to Medi-Cal. It was late Thursday afternoon and they only work until noon on Friday. I returned to the hospital and found out that one of the skilled nursing facilities had agreed to accept Mama Hawk pending the Medi-Cal reinstatement but would not have a bed available until after the holiday weekend. I contacted the assisted living facility and asked if they would take Mama Hawk back until the following week and they did.
After Mama Hawk was discharged and resting comfortable back at the assisted living facility, I visited the skilled nursing facility that had agreed to accept Mama Hawk. I met with the admissions coordinator and asked if there was any paperwork I could complete ahead of time. She said no and that she would contact me as soon as a bed was available.
I spent the holiday weekend getting Mama Hawk's belongings ready for the move. It's amazing the things you collect over 5 years. Mama Hawk had a private room at the assisted living facility but the skilled nursing facility would be semi-private. All she needed were clothing and a few personal items. The following week, I checked in with the nursing home every day – still no bed available. I even checked in with the 2nd nursing home – nothing. During this week, I received a phone call from the assisted living facility almost every day inquiring as to when Mama Hawk was moving.
One day after visiting Mama Hawk, I decided to stop at another skilled nursing facility that was directly on my way home. It had been recommended to me by a co-worker. It was a Sunday so the administrative staff was not in but the nursing staff gave me a tour and provided me with information. The next day after receiving yet another call from the assisted living facility asking me when Mama Hawk was moving, I visited the nursing home from the prior day to speak with Admissions. YES they had a bed and would accept Mama Hawk under Medi-Cal! They explained to me that some facilities allocate a certain number of beds for Medicare and a certain number for Medi-Cal. (Apparently Medicare pays more than Medi-Cal.) This nursing home just accepted patients – no allocation. This day they had 4 beds available. It was June 4th and Mama Hawk moved in the next day!
I arranged for Mama Hawk's transportation from assisted living to skilled nursing. I contacted the same transportation company we had utilized for medical appointments. Turned out that "moving" was not a covered medical expense. The cost was $21.50 – fine I paid cash.
Mama Hawk's roommate turned out to be her "Guardian Angel". Although she could not get around very well, her mind was 110%. She was quite familiar with nursing homes, Medicare, Medi-Cal and was extremely willing to share her knowledge. Each day when I arrived, her Guardian Angel would give me an update including what, if anything, Mama Hawk ate that day, if she was bathed, if they got her up out of bed, etc. Although I visited every day, I was grateful that Mama Hawk's new roommate was watching out for her and she was her voice – an angel.
Mama Hawk had stopped eating and the director of nursing recommended that I consider hospice care. I was not familiar with hospice so I met with the hospice team. I learned that hospice would provide additional care for Mama Hawk and support for our family.
One week after Mama Hawk moved to the skilled nursing facility, she was placed on hospice care. The hospice nurse informed me that based on her experience, Mama Hawk had days to weeks left to live. I informed my siblings as I had every step of the way along our journey for the past 5 years. My sister immediately traveled to be with Mama Hawk. She arrived Friday, June 15th. Together we visited Mama Hawk and each of us told her that it was ok to let go. On Monday, June 18th, the hospice nurse met with us and asked us if there was anyone else that Mama Hawk was waiting for because she seemed to be holding on for some reason. We informed her that we had 3 brothers. She suggested that we get each of them on the phone and hold the phone to Mama Hawk's ear and let them say good-bye. We did this and Mama Hawk passed away that evening. She was finally at peace.
Thank you for taking the time to read our story. I now invite you to join the conversation here>>