Stewardship, Sharing and Family

Today I have learned that we cannot be attached to the things of this world. Literally we are just stewards of the shelter and goods that God has provided us with. I spoke with an attorney today to assist me in some decisions regarding the sale of my Dad’s property. Speaking with an attorney helped me to decide how to best provide care for my dad in assisted living as well as have him qualify for Veteran’s Benefits. My Dad enlisted in the Navy at the end of his junior year in high school. He was in the Navy during World War II and was honorably discharged when the war was over. Over the course of his 84 years he never asked for any benefits from the VA. No healthcare, pension or assistance. I am told that this is typical behavior of men of that generation. Many of these men grew up in the Depression and were too proud to take any assistance from the government. Assistance programs in those days were to benefit those who were really down and out. Most Americans just pulled themselves up by their bootstraps and carried on.  Many people had their own gardens to supply themselves with food. My grandparents raised their own chickens and pigs as well. They took in boarders for money. My grandmother a Hungarian immigrant in the early 1900’s, cooked, cleaned and did the wash for these men who worked in the cement factories - many who were immigrants themselves. My grandfather also a Hungarian immigrant was a carpenter in the cement plant. The men would tell stories around the table after dinner, play the zither or mouth harp and maybe engage in a little drinking of home-made beverages. Their lives were not complicated but were full of manual labor, stories and relationships with each other as they worked together. They were not rich, but were happy with what they had. Meals consisted of broth based soup with home-made noodles to start, some form of meat and a vegetable. Many things were cooked with lard or sour cream. There were home-made potato biscuits and baked goods. My grandmother would bake a cherry pie in a rectangular pan and place it in the window to cool. Many of the townspeople would walk by the window and stop to smell the pie’s goodness on their way to the river. My Mom lived in a house built into the bank of the Delaware River in New Jersey. The small town she grew up in was Brainerds, NJ. It was a melting pot of the Italians, Dutch, Hungarians, and African Americans. My grandfather would rake the sandy beach outside their door for the townspeople to come down for a swim in the summer. This sand floated to their home from up across the PA side of the river called Riverwood Beach. It was a gathering spot for the town as the boys and girls would jump off a rope swing or train trestle into the river. More on Brainerds, NJ later!

 At age 15 my mother was hired out as a domestic servant to a wealthy family in the East Stroudsburg area. Mr. and Mrs. Earnest Hoag were importers and exporters of fine goods from China. They lived on a lake which had an ice house and an outdoor tea house. Back in the day ice was used as a means of refrigeration. It was stored in an icehouse and delivered in chunks to be placed in an icebox which kept meats and perishables chilled. The lake had canoes that “the help” could use in their “off time” as a form of relaxation. They entertained the likes of artist Colin Yates, and musicians Jimmy and Tommy Dorsey. Many social gatherings of the elite of that time were held in their mansion.  The domestic servants wore a black uniform with a white apron, white cap and white gloves when serving a meal .  At a very young age my Mom taught me how to set a table and what utensils were used for each course of the meal. The Hoags took a liking to my mother and offered to adopt her. They wanted to give her a better life than her parents could give to her. When approached by the Hoags, my Mom (the interpreter) and my grandmother would not agree to the adoption. My mom loved her parents fiercely and would not consider a life of riches to be a substitute for these family-filled times. My mother worked as a domestic servant and was paid $5 a week. This was good money for these troubled times. She would live at the Hoag’s house and at the end of the week would be picked up by her brother –in-law Wesley to come home. He had the only car in the family. She would give him $1 for gas money and the rest went to support the family. The year was 1937.

How to tell if your parents have dementia

Next Question: How do you know your parents are slipping/going backwards mentally and physically?

1.       Hygiene becomes poor. – not washing, combing , brushing teeth, incontinence, stains on clothes, food stains on chest, smell, not shaving.

2.       Dry, itchy, flakey skin = dehydration.  Even if you force fluids at this point in time he or she may still need to go to the hospital for IV hydration.

3.       Accumulation of clutter in the house. Not allowing you to get rid of the clutter. Fearful of throwing out important papers…The papers should be filed already if they are really important!

4.     . Broken items – dropped picture frames etc.

5.       Things tied in bags – packing to go away when no trip is planned.

6.       Forgetting/refusing to take meds.

7.     Forgetting to eat – food spoiling or food not touched in fridge.

8.      Inappropriate things found in fridge – socks, rubber duck etc

9.     Change in mental status - agitation? Difficulty speaking? Stroke?

10. House dirty – dishes or wash not done.

11  Assess driving  skills– speak with the loved one’s MD re this. Person who has dementia still insists on driving when they really are a hazard on the road...

12 Short term memory loss

13  Like shaped items grouped together

14 Arriving late to places – my parents arrived late to my sister-in-laws wedding reception and walked in as they announced the bride and groom! Everyone had a good laugh – but embarrassing….

15 Circle of friends and interests is smaller. They become reclusive.

16  Don’t answer doorbells or phone.

17  Forgetting day of week and time. I purchased a digital desk clock that tells not only the time of day, AM or PM, date, day of week, year and room temperature at Wal-Mart for $14. This is the best buy for someone with dementia. It takes 1 AA battery.  Another tip - Make sure all the clocks in the house are set for the same time. Elderly get confused when the days are shorter. When it is dark at 5 o’clock is it AM or PM? Most seniors with an irregular sleep schedule may wake up from a nap and think it is 5 AM when it is 5 PM.  Keeping a regular schedule throughout the day is best. Reorienting them to time of day by pointing out things like lunch-time traffic, church bells ringing etc helps. Keeping them mentally and physically active is good also.

18  Hoarding of items – collecting stacking keeping items that are of no value.

19 Blaming others for your word loss or lack of assistance from someone else in naming objects.

On Rebates and Scam Artists Effecting the Elderly

The American Red Cross and the Local County office offer a monthly discounted price for a Lifeline button to seniors who live in our town. This discounted monthly rate is from $40 to $25 as a grant from the Trexler Trust Fund. There are also coupons available from the AAA to reduce the installation rate of this device so that the user only has to pay the $13 for S and H. I got one of these devices for my dad. He used it to call the ambulance on his last hospital admission as he became weak and confused from dehydration. The ambulance, police and fire company all responded and took him to the hospital on my birthday while I was at work. I was leaving the hospital after work and received a voicemail from my dad’s neighbor that he was taken out in a wheelchair to the hospital….I quickly went to the ER to find that this was true.  Recently I have returned the Lifeline device as my dad is going to be living in an assisted living facility. One must pay for the shipment back of the call button necklace and call box device that gets hooked up to the phone line. This costs roughly 6-8 dollars.

Let’s talk about rebates. You can apply for a rebate on your water and sewer bill on your primary residence. You again must have all the paperwork lined up to prove identity, residency, us citizenship, income and holdings etc. I did receive a rebate for my dad of approx $75. Some of this really is in vain because you pay accrued late fees on these bills. The penalty is not much – but when on a fixed income everything must be examined. I went with my dad to his bank and talked to the branch manager as I found my dad to be delinquent with his taxes and many bills after the death of my mother in 2009. He did not pay any taxes in 2010. I had to call the collection agency and set up an affordable payment plan over a 5 month period. He was also accumulating overdraft charges from the bank which if not caught keep accumulating. My dad reluctantly agreed to have me as POA on his checking account. The branch manager was able to rebate most of the OD charges and penalties. On second look at my dad’s statements I noticed monthly withdrawals from certain companies with 1-888 or 1-800 numbers. These companies when called by the branch manager claimed to have sold my dad internet services. Funny – because my dad does not own a computer! Somehow either on the phone or in the mail he sent checks to companies for prizes, lotteries, psychics and other mail demons who over the course of years drained his checking account. They do this by charging a monthly fee of $20 - too low to be detected by the bank’s fraud radar. If fraudulent activity is suspected by the bank radar then the amount is changed to $19 per month for example. I have thrown away much junk mail and get rich quick kits and subscriptions to magazine telling about true wealth and government conspiracies and health secrets. It is all a scam! It is very difficult to get rid of these parasitic people. They will call your family member on the phone. Try to meet them at the bank. Tell them they are in town and want to stop by for a visit. The elderly are prime suspects for this activity. These people get the elderly when they are weak, vulnerable and lonely. I would be angry at my dad for talking on the phone to these people and he would not answer the phone for me when I called to check in on him! At first I would run over to make sure he was ok – only to find him sleeping or watching TV. This was not good use of my time at all. Many times my spouse or I would have to leave work or other appointments for this reason.

 Back to the mail demons…You can fill out forms through the US postal service to try and stop some of these mailings. You can pay someone on the internet to cut your name off of the mailing lists as well. Once on the sucker list you get mailings from psychics, angel speakers, the amazing Kreskin, true wealth companies, and newsletter subscriptions to people supposedly “ in the know” about the economy and the state of the country. It is all bullshit! The easiest way to police this mail (which by the way when unattended amounts to many boxes of clutter) is to go through the crap mail and throw it in the recycling bin before it gets into the house. I would pull all the bills and keep them in a separate pile so that I knew what his monthly expenses would be. I called all of the utility companies, medical companies, tax bureaus etc and set up payment plans. With the help of the branch manager I closed out the checking account and opened another policing and maintaining control of the checkbook so that no checks were sent to these companies. As the branch manager told me – it’s all over once they have your routing number from the check in hand. It is sick and these people should be convicted for fraud and misrepresentation. I have listed to many a voicemail and taping of my dad speaking to a Jamaican man on the phone named  Mr. Smith or Johnny Jones etc. asking when he could go to the bank to get the money. They are pathetic parasites.

Other rebates are available to the elderly:

Rebates on taxes: If you pay them you should be able to get a rebate. Consult your accountant.

Rebates on heat: Apply for : LIEHP in the month of November  through the Lehigh County or though your coal, gas or electric heat provider.

Elder Care - Part 2

Getting back to the story of my dad…His dementia was affecting his short term memory. He would forget to drink and then become dehydrated and his kidneys would not be able to process the toxins resulting in a toxic buildup in his brain. Weakness and lethargy would set in and we would end up back in the ER of the local hospital. You know that it is bad when the ER nurses start to recognize you and call you by your first name! We tried short term rehab at a hospital-based facility and then visiting nurses, home health aides, PT and OT to visit him on a weekly basis. This was the third time that he was admitted in this situation. I had found him confused, agitated, sitting in his house in a t shirt and shorts very quiet, head held down. He had been incontinent many, many times through his clothing and onto a washable chair pad. We kept supplies of pull up diapers, disposable and washable pads on hand. His urine was so concentrated the smell was actually paralyzing to anyone nearby. Only weeks ago during his second hospitalization in July I could be found scrubbing the bathroom floor on my hands and knees. My daughters assisted me in cleaning out a clear pathway in his house so that he could come home with a walker. We removed any unnecessary clutter. We trimmed bushes, did wash and dishes routinely. I also got my dad’s shower cleaned out and working so that he could sit on a shower chair and wash with assistance. He had a home health aide now coming in to help him 2 days a week with bathing. He did not qualify for Medicaid as he owned some stocks and an additional property which was my grandparent’s house and his place of business with my uncle. This 2 unit house and large storage garage had not been entered in many years. I am not even sure what equipment is inside the garage which had been a pretzel bakery. The property was built in 1900 and lined a popular street in the first ward in our town. Many a St. Patrick’s day parade were viewed from the front porch of this house. My husband and I routinely shoveled the walks of this house in winter and cut grass in the backyard in summer. We were reluctantly supplied a key for the gate leading to the backyard so that we could get in and get the work done.  In order for my dad to qualify for MA he would have to sell his stock and have a legitimate realtor list the house for sale. My dad had done an “assist to sell” program in the past. This did not prove to be fruitful. Through the Local County Area Agency on Aging I was able to get my dad on a waiting list for a home health aide after his eight weeks of homecare visits were up. Though my dad’s caseworker in the AAA I obtained food stamps for him to cover additional food purchases up to $200 per month. Food stamps however do not cover any needed household cleaning supplies, toiletries or more importantly incontinence diapers. I would clip coupons and go to Rite Aid to get these supplies. We got Meals on Wheels (MOW) for 5 days per week – Monday through Friday. Weekends were uncovered as my dad came over to my house or went to Wendy’s for a burger. However we still had to pay for MOW as  his food stamps did not cover the prior months…again some of the government aid was useful…only a little too late as my dad was admitted to the hospital in the month that the food stamps started to cover MOW. There are other issues that come to light when applying for MA. First off, it was a real eye opener going into the County Welfare office. Many times I called the phone line as my Dad was assigned a case worker and a specific appointment time to be available to receive the case worker’s phone call.  The receptionists at the MA office would either pick up the phone and set it down or not answer at all. It was very frustrating to try to get in touch with the CW. We missed the phone appt that we were assigned. When applying for MA you are given a date and time that you need to be responsive to. My dad was not able to be mobile at 0830 in the morning. He missed the call. I panicked, could not get through to the office. I decided to write the CW a letter and fax it to him. He responded to the fax and we connected via phone. He was very helpful. We cooperated and got all of the necessary paperwork, forms of identification, proof of income, and residency, checking account balances, monthly SS income, car registrations and insurance, life insurance and house insurance etc. Many of the insurance policies we left go as my dad had 2 vehicles (a car and a truck). You can only drive one at a time! We didn’t have any homeowner’s insurance, limited life insurance and no long term care insurance. My parents only had medicare part A and PACE. By the way an interesting fact…my dad’s monthly social security income is less than that of someone who comes to the USA from another county and applies for SSI. SSI applicants get over $700 per month and have never worked a day in the US! My dad was a veteran and self-employed business owner for over 50 years paying taxes and social security his whole life….Hmmm something is drastically wrong with this picture. Many people collecting SSI also just send the money to their homeland….not even spending the money in the good old USA so as to keep the economy going….Ugh!

Elder Care

I have titled this “Lessons learned from caring for my elderly parents”.  You will be old someday so please be advised and do not dismiss what I have written as unimportant. Someday you or your children will live and learn from this life lesson.

There is an unspoken understanding that happens when you hold someone’s hand and don’t say a word. It’s a sense of knowing and compassion, believing and hoping that what you are doing is right. And yet we still doubt ourselves. This is how it was the evening I drove my dad slowly under the light of the full moon to the Nursing home that he would come to call his home for the next month. He was being released after a 3 day stay in the hospital for confusion and weakness related to his dehydration secondary to his vascular dementia. Forgive me if I sound like a nurse…but I am. I have prided myself in being my father’s advocate not only for his health but his well being. I have been toting around with me a very large bag filled with important papers and documents containing, financial, medical and personal information much like a social worker. I am his case manager, his caregiver, his council, his child. On this particular night I drove my dad ever so slowly to the place that may be his final destination. Observing every speed bump I tried to delay as much as possible his delivery to the front door of the Phoebe home. It was quite an unusual night as it was dark rather early and had been raining throughout the day. We pulled up to the front door and I assisted him out of the car and watched carefully his slow progression up the stairs, somewhat unbalanced and falling backwards until I caught him and pushed him forward towards the railing. “Oh Dad please don’t fall!” I said. This is all I need right now… Back in the hospital his doctor strongly recommended assisted living as his dementia was progressing. Prior to this my dad was living at home alone in the house that he and my mother built 50 some years ago. They hammered the beams in place, painted closets, installed dry wall etc. It was a place that I called home for many years – a place that held family celebrations, happiness, good times and good food. Many memories were created and left there as I grew older, started my own family and avoided what I identified as the beginnings of dementia in my mom. My mom had always been very pleasant. She loved to bake and cook and create. As she got older she started to have hallucinations of people trying to break into the house and steal her possessions. She wanted to go home and was always packing things and sorting things according to size and shape. I found socks in the refrigerator. Tops to ketchup bottles were replaced with those of the dishwashing liquid. Candy wrappers were neatly saved. Many recyclables cluttered and filled the house much like an episode of the TV show “Hoarders”. Things were dirty, dusty, dark and closed- in tight. Pathways were lined with boxes of papers and trinkets from deceased relatives that my mom could not part with. After cleaning out the houses of deceased relatives my parents brought home clothes, knick-knacks and furniture. These items caused clutter and havoc in the house. There were mice droppings, holes in the ceiling of the downstairs bathroom from water leaks, dust and inches of dirt everywhere. I was not allowed to remove any of the clutter as my mom would get upset and bring the removed item back into the house. One time she made my dad haul a recliner back into the house from the curb as we had put it out for garbage.  I got very good at the art of distraction as I would hide items to be removed or take them out another route of the house for disposal after getting my parents interested in a TV show or movie.  Many times my Mom dressed inappropriately for the weather wearing warm items in the summer and skimpier items in the winter. It was always a concern to find her without a warm coat or bundled too warmly in the heat. My dad often kept coats in the car for her in case she fought him to put one on. Most times she did not know who my dad was. Many times she thought he was her brother or boyfriend. One conversation is prominent in my mind. My mom said to me:  So how’s your mom? I told her - you are my mom! She said I am? It’s so nice to meet you! I was 45 years old at that time…