Alzheimer Disease
Forward
We, like many others who have been care givers for a relative, parent, or friend with AD, recall found memories and sad ones as well; wish that some things had been done differently; went through a period a denial; became confused ourselves; and profoundly pray that our children will not have the trauma of dealing with AD.
Our first encounter with AD began in 1983. Prior to that, Gladys had signed a durable power of attorney and had prevailed upon all of her family to do the same - except for her brother - Buck Brown.
My wife's mother had developed several patterns of behavior which were not atypical of long established conduct. First, bills became unpaid or overpaid. In our attempt to help, we noticed that the check book entries, which started as neat entries, over a period of time ended up in scrawls. Secondly, beauty parlor appointments were now being missed with regularity. We concluded that "something" must be wrong with Mrs. Locke and arranged for an appointment with her long time physician. Dr. McVay met with Mrs. Locke that fateful day in 1983, had a lengthy talk with her, after regular clinic hours, and asked us to meet with him the following week. We returned and Dr. McVay informed us that even without further testing, he concluded that Gladys suffered from a form of dementia, but preferred not to classify it as AD.
From the onset, my wife and I agreed that we should keep diary entries to detail what we had done to help Mrs. Locke and her invalid sister, Irma Hamilton. Irma-Imy, as our children called her, had been living with her sister for several years, after the death of her husband.
Over the next ten years, we were thankful for our foresight in keeping a diary, because Mrs. Locks brother - Buck Brown; her sisters Irma-Imy and Helen O'Pry and her husband became to depend upon us for their well being.
We have provided some of these diary entries under major headings, which we experienced in caring for our five relatives. These entries end with the death of the five relatives under our care, the last of which was Mrs. Locke who died in 1993. We do not attempt to draw any conclusions. Those are left to you, our visitor. Our prayer is that others will avoid our mistakes and benefit from what we did correctly.
The diary entries are taken from our actual records, placed in sequence by event, and are not intended to make complete sentences or statements, rather they should convey a sense or feeling of our thoughts at the time of our writing.
Financial and Legal
Gladys has gone through all of her savings and we have cashed in a CD, which was for our children's education in order to keep our promise not to send Mrs. Locke and Irma to a nursing home. At first, one day worker was able to provide meals, keep the house, clean and take them on outings. The disease has progressed and now around the clock care in the home is required. The cost now exceeds nursing home care. We have applied for Medicaid help. The aid worker says the information we have provided is not adequate. Several more attempts are made to provide the necessary information for nursing home care and financial support. The aid worker said, either have the information which is requested in my office this Friday or we will not get any financial aid. Went to bed at three a.m. Have to take the information to the Medicaid office by eight a.m. Awoke with a start. Someone is at the head of our bed, beckoning me to return to the office and rework the information. Reworked the information and took it to the Medicaid office and met with the aid worker. She is happy and friendly. A complete change from past meetings. She said that this information is just what she wants and she will let us know by ten a.m. about financial aid. Have a call and everything is complete. We got the aid. Can admit Mrs. Locke within the next three days.
A neighbor of Uncle Bucks called. He has just sold his boat, car, and truck for $1,000. We confront the neighbor. He has a bill of sale. Uncle Buck does not know about the money. Called our lawyer. He told us that anyone can sell anything for any amount of money. Probably can not get the property returned.
Gladys can no longer sign checks for Buck. One of his neighbors and I went to his bank. The branch manager told us we can not sign checks for him because there is no power of attorney. Do not bring one to him, because he now knows Buck is incompetent. Called a friend with the bank. He arranged for a meeting with one of the vice presidents, who called the branch manager and told him to personally approve checks with attachments, until a court hearing could be held. Probate court judge declared Buck incompetent and made us guardians. Thank God for the kind vice president.
Domiciliary Living
Gladys and Irma really like the home in Saraland. Real clean; food is from the garden in the rear of the property; people are friendly; ladies playing cards and shuffle board; large piece of property. We will return unannounced later this week. Our return visit was just like the first visit. Gladys and Irma are real happy here. The owners call daily and let us know about their well being. Medicine is ordered prior to running out. No emergencies. The fire Marshall made an inspection and noted Alzheimer disease on several of the residents. He called the state of Alabama. We have received notification that Irma and Gladys will have to move because in the event of a fire they may not be able to respond on their own. Cuss it, now we will have to move them, but where? Another Domiciliary house is found which has assisted living. It is downtown and not as nice as the one in the country. We got a call that Irma has fallen and her head is bleeding. She is rushed to the hospital and found to have a severe concussion. Irma has died. We request an autopsy. AD is confirmed.
The house is hot as hell. The air conditioner is broken and Gladys is strapped to a chair. She looks pale. Try to find a supervisor, but no one is available except regular help. We take Gladys to our home and go back to get all of her belongings. We will not let her stay in that house another day. A few weeks pass and an opening becomes available in a nursing home close to our home.
Helen and Jack want us to go with them to Gordon Oaks, which is a retirement center. They have unassisted and assisted living accommodations on the same grounds. Helen and Jack moved into Gordon Oaks. Have a big yard sale and finally their home is sold. Everything has been uneventful for the past two years until we get a call that Jack has been taken to the hospital. Helen continues to live here for the next two years and finally has to move because she can no longer do things without a great deal of assistance.
Nursing Homes
The court order declaring Uncle Buck incompetent enabled us to have him placed at Searcy. The medical bills are close to nothing. The staff wants their residents to be self sufficient and work toward eventual return to society. Uncle Buck has not looked this good in years. We play basket ball and quite often he wins. Still a great person to talk to except for religion and politics. Bad news. The staff has recommended that we move Buck to a nursing home. They need the space for state non pay residents, which are court ordered. We have appealed and won a judgment from Probate court that in the event we wish to have Buck readmitted, he will be first on the waiting list. The downtown nursing facility has just reopened under new management. Bucks medicine bills are now about $400 per month after just three months here. We had a lengthy talk with the administrator and nursing staff. They have agreed to reduce the medication. Got a call from the nursing home. Buck has been taken to a hospital with a broken leg. We were not informed prior to his transport. Severe clotting in leg. Has to be amputated. Buck is returned to the nursing home. Again we are not notified. I raise hell and write a letter to Alabama outlining my concerns about this facility. Too late. We are informed that Buck has been sent back to the hospital. He dies several days later. We request an autopsy. AD is confirmed.
Jack O'Pry has been rushed to the hospital. He became rigid and could not talk while in line for supper at Gordon Oaks. The nursing staff recommends psychiatric evaluation. We have taken clothing on numerous occasions, only to have a prior neighbor of the O'Prys say that we do not do anything for them. Jack is released from the psychiatric unit and the neighbor is given fourteen pair of shoes and about forty change of cloths. We received a letter from the neighbor apologizing for her saying that we did not do anything for the O'Prys. The hospital has informed us that before Jack can be admitted into a nursing home he must be certified sane. This is because of a provision in a recently passed U. S. budget bill. Called Senator Howell Heflin's office to see if he could help get the certification for Jack. Informed them that the state of Alabama indicated that they could not see Jack for about three months because of their backlog. Two days later Jack was certified sane and we were able to move him into a nursing home. Everything was all right for the next two years, then we got a call that Jack had suffered a massive heart attack.
Mrs. Locke was moved to a nursing home close to our home. Celebrated her birthday with plenty of cake and ice cream - two of her favorites. The nursing staff loves Gladys and we have developed friendships which result in some "extra" care for Gladys. Celebrated six more birthdays, until her death in the nursing home. We do not request an autopsy. My wife cried all night.
Helen O'Pry is moved to the nursing home where her sister - Gladys is residing. Helen is moved into the room with Gladys four months later. Visiting and caring for both of them is much easier. Arrange to take them on short trips. They seem to do all right when they have returned to the nursing home. We got a call this morning. Helen has swelling in her leg. Nurse thinks is a blood clot. The hospital confirms the clot. Medication is administered and everything seems to be going all right. Got a call early this morning. Helen has died. We request an autopsy. AD is confirmed.
My Long Time Friend
Melvin Crivellari was my roommate in college, a member my wedding party, and a bowling, fishing, hunting and poker buddy. After his death, and the death of my father, the joy of pursuing these interests became painful.
Yes, I remember when Melvin and I were on the front page of the Birmingham News and all of those other good times. I miss Melvin, but the fond memories remain.
Some helpful links are listed below. However, nothing takes the place of a local support group and a strong unwavering faith, no matter what the denomination.
In Faerieland there is no illness, no death,
only living which is free from the infirmities of our earth. Our "little girl" is our minds picture of our loved ones who have gone to be with our Lord. They continue to guide and help us from their
heavenly place. Thank you Taylor Austin for remembering and remember well my friend, for you have stored treasure in heaven.
.
