Finally!! Mom had a good day!

This evening I finally heard the attitude in Mom that I've been praying for.  Mom told me that she had a good day and that she enjoyed the young people that worked at the ALF!   Today, for the first time in 7 months, I left her room without feeling guilty.  I will leave town after a weeks' visit without feeling guilty.  I know she'll still have some bad days and bad moods but for now I am so VERY, VERY relieved.   It's an enormous weight off my mind.  

Her good day started with good conversation.  Her tablemate's son visited during breakfast and they had quite a talk about the railroad and the men - my uncles - who worked there.   She also had some fun with the other women in her dining room; they schemed about practical jokes that they could play on other residents and the aides.  It's refreshing that her spirited side can still come through. 

Mom seemed to sense that I needed to hear something positive from her.  She's missed having people go in and out of her home; it's been a long time since lively young people ran in and out.  She enjoyed the aides that came in to plop down on her bed for a few minutes to take a breather and check on her.  She likes that they feel comfortable enough to stretch out on her bed or sit for a coffee or soda with her.  I'm liking that she's feeling at home and so comfortable with the other residents and staff. 

Online paper gives us something to talk about

I just got an online subscription to the newspaper in my home town and it's done wonders for Mom and I. Before I call her I read the local headlines so when we're on the phone we have all kinds of things to discuss. We read the same articles so I can easily understand if she tries to tell me about a particular topic. Before she'd try to tell me about what she read but might forget a few details then realize it was not a complete story then she got flustered. This way I can ask her questions about the issues or people involved and it's a much better conversation.

On a more fun note: I won an honorable mention with the picture that you see to the right of this blog. It's Mom in the Summer of 2008. I submitted it to the local newspaper photo contest and won a small acknowledgement of $25 in gas. It's not a huge sum but it's something. The fun part is that the paper published it on Sunday, July 17, so Mom saw it and realized that I won with her photo. When I called her she was happy about it but said - with a chuckle - that the least I could do was use the gas to take her for a ride! I will gladly do that.

Brother wants to move mom in

As I expected, I got "the call" from my brother the other day. He wants to move my mom into his home. I must be painfully honest here, this brother and I have rarely got on well. While his initial intent is probably good, he has a way of trying to weasel things to his benefit and it usually turns out poorly for all involved. He is trying to be sensitive to our past and began this discussion with a voice mail: "I want to have a nice friendly conversation...." I dreaded returning his call but it turned out well. We agreed to discuss the idea and I told him it's my responsibility to play devil's advocate and look out for what's best for mom.

I had considered this scenario - Mom living with them - but it only lasted a few minutes then I dismissed it as unwise. I know just what my brother is feeling, we don't get along because we are very much alike in some respects. We both want to help family, we both want to make Mom's money last as long as possible; we both feel a sense of obligation to try and make her last years as happy as possible. That said, there are practical considerations that we must consider.

• First is the amount of help Mom needs. I don't think my brother realizes just how much mom CAN'T do for herself anymore. Holding normal spoons and forks is hard given her weakened hands and failing dexterity. He is not the one who would help Mom; the burden would fall completely on his wife. Mom also has no chronic problems like diabetes or heart disease that would speed her passing. Aside from arthritis, her heart, kidneys, liver, digestion, etc.. are all good. She could live another 5 years or more. That's a long time to help someone who needs so much.
  
• Second are personalities involved. My brother will not be the primary care taker; his wife will be the one who helps Mom. My sister in law and mom probably could not get along under the same roof. Mom is very intelligent and logical; she has years of experience doing many things and she wants to be involved. She also doesn't understand that others need to feel that their methods are meaningful too. I just know Mom would end up criticizing sister in law and it would sound insulting. Feelings would be hurt, anger would result and then resentments would build.
• Third is money. Brother suggested that his wife (sister in law) quit her part time job and Mom pay them the same amount each month to live with them. Seems easy enough but they fail to consider that sister in law can leave work and stress then come home to relax. If Mom lives with them it's a 24-7 commitment. Brother and family are also not the best at budgeting; I know that soon they'd be asking mom to "help" round out their finances with extra money. They would not intend to take advantage but it always seems that something goes unpaid - the electric bill, the phone bill, the water - it's inevitable that they'd look to Mom for help and that's not acceptable. She's avoided helping too much thus far but living there would mean greater pressure and resentments on both sides. She doesn't help, they resent her and her prescence. If she does shell out more cash; she resents them and feels used.
  
• Fourth is respite care for Mom. Brother has diabetes; sister in law has problems with knees and feet. They also babysit their 2 year old grand daughter. I live in another state so could not easily get there for emergencies and stay without advance planning. There is no one to stay with mom if they need a break for more than a few hours. They deserve some vacation time. Who would do this? How long could they go without a break? What if one of them has a medical emergency ? Their kids will want to be with their parent not staying with grandma.
  
• Fifth are the conditions of their home. They live in a small place that is elevated by steep steps. Mom could not get in or out without a lot of help. Neither brother or sister in law can carry Mom; special ramps or something are required. There are no bars in their bathroom or shower. Door ways and halls are not wide enough for a wheelchair and remodeling is not practical. I feel the home is cramped for two people, a third with special needs would be so cramped as to cause great stress and inconvenience.
  

We have not had this conversation yet but these are the topics I will bring up. In the end, as Mom's Power of Attorney, I will probably say no but I will have a civil discussion. I know it's more about preserving the relationship with my brother and sister in law (for his kids more than anything else...). My brother is generous to think about moving Mom into his home but he and his wife deserve to think of themselves. I think the amount of work, emotion and patience required would cause too much stress for them. It's best that they conserve their energy for kids, grandkids, themselves and grandparents. They can visit Mom and take her out with the family instead of provide 24-7 care for her.

Consider these things about an Assisted Living facility

After hearing that I recently moved my own mother to an assisted living facility (ALF), a friend called to ask about my selection criteria. Given the choices in Mom's home town, the shear low number of options helped narrow the list. I was also lucky enough to have a classmate who works for the state and had some suggestions. I added our concerns in italics:

From Rena D, consider these things and your parents needs:
Transportation & Outings for business and pleasure We wanted to make sure that Mom could go and get some assistance without extra fees
Special diet and food preferences Mom has no allergies but should she have special needs these are met with no extra fees
Extra fees for services Some ALF's nickle and dime residents making financial planning impossible. We chose to move Mom to a one-price ALF because she needs so much help; if she were able to do more for herself then a fee-for-service ALF could be less expensive.
Activities, are these scheduled regularly?
Laundry for Mom, laundry is picked up weekly. I had to put her name or initials on EVERYTHING - socks, sheets, pillows, underwear. It's a pain but will ensure I don't have to replace anything. Some ALFs have daily or twice daily pick up for special needs but you must ask for that.
Staffing Ratio; is there a nurse in the building or on call? Mom's has at least one LPN on 8-5 and one on-call evenings and weekends.
What's included in the monthly rent? cable, phone?
Can you keep your own doctor or must you change? I would be very WARRY of any ALF that required a resident to change doctors. Unless there is some special need, the ALF should be able to work with ANY doctor.

One very strong recommendation: ALWAYS seek the opinion of your parents regular doctor before making a decision on a specific facility. Physicians know the conditions of patients and the type of care they get; they also need to have clear and easy communication with the facility. The physician might not be comfortable telling you past experiences but ask if they would move their own parent to a particular facility.

I had some concerns of my own:
Is there a private dining room where the family can gather with Mom?
Can she keep her own pharmacy? What must the pharmacy do to meet the criteria of the assisted living facility? Mom's ALF requires that all her meds are bubble packed and that the pharmacy deliver them. The family is also required to pick up and deliver any one-off medications. At first they told me we'd have to switch but Mom feels some loyalty to her old pharmacist so I asked if they could meet the ALF's requirements and they said yes. The ALF at first told me we MUST use THEIR pharmacy located in a city two hours away. Such a requirement reeks of conflict of interest to me so I pushed back and went with the local store instead. I promised that if it didn't work out after 3 months we could use their pharmacy but if I saw increases in the costs, we'd have to talk.
How easy is it to take Mom on an outing? In Mom's case, it's very easy, I simply sign her out. But she requires no special equipment or wheel chair. If she will be away more than 5 hours, I check with the nurses desk and they'll give me her regular medications so she stays on schedule. They trust that I'll give the meds to her. I don't know what they'd do if she were taking some highly controlled narcotic - that might be something to ask your local ALF since regulations might change from state to state.
Can I spend the night in Mom's room? Given Mom's epilepsy, I know there will be times when she needs me or someone to stay with her, plus, I just want to be able to hang out with her. Her ALF has a roll away bed that visitors can use any time. I can also join her for meals for a small fee.
Can Mom have food or a coffee maker in her room? Mom loves to play hostess and have coffee and treates at 3pm daily so she keeps these in her room. If she can keep up that routine and include some friends, it will feel more like home to her.
Can we join Mom for activities like bingo or concerts: This ALF welcomes family members for most activities. There are a few events where liability and safety are of concern (and thus the insurance company) like fishing where Mom might have to ride in their bus but we can meet them at their destination and join in.

Day 7, a really tough day...

Day 7 at Assisted Living...and today was really rough. Mom was feeling despondent and like she was on the verge of a seizure but a treat, a chat with an old neighbor and another with an old acquaintance helped.

Mom's had epilepsy since a stroke during my birth. She has grand mal seizures under two conditions: high anxiety situations or a lower than desirable level of dilantin, her anti-seizure medication. When she feels a seizure coming on she gets scared which elevates her anxiety and exasterbates the situation. Often these may be stopped if she gets some rest or if we can quickly make her anxiety go away. The latter is usually impossible.

When I arrived at her apartment about 11am, she was crying in the bathroom. "I don't belong here with these dunderheads! None of them can hold a conversation. I want to go home.!" I felt a rush of emotions - anger, worry, saddness and frustration. I feel an enormous sense of guilt when I feel angry or frustrated with her. Even writing about my emotions here makes me feel guilty - this should all be about HER. It's a huge change for HER, SHE needs the support. SHE needs the adjustment; She must be comfortable. But - she trusts me and relies on me for help with business matters and emotional support more so than anyone else. Sometimes it's too much - I can't take care of two households and a full time job. It's a lot to do and I can't ask for much help from family for a variety of reasons. I'm not trying to be a martyr - I'm too lazy for THAT.

So - what to do for Mom without moving her... I did the thing that would distract a little kid - I plied her with soda pop and junk food. I loaded her onto her walker/seat and took her out in the sunshine to have a cold drink, BBQ chips and watch the valley view. We talked for a while and as her voice grew stronger, I reminded her of my brothers health problems. I wanted to spare her this conversation so that she'll concentrate on herself but this situation pushed me into it.

For more than 10 years my brother lived at her home. While he was helpful at first, over the past 3 years, I've watched his behavior deteriorate to verbal abuse, impatience and down right meaness. He drinks more than ever and, as a heavy smoker, he can't walk across the yard without stopping to catch his breath. His health issues make it impossible for him to care about anyone else. After only a few days we see a huge sense of relief in him now that she's living elsewhere. I had to tell Mom that he can barely take care of himself now so helping her will just make him deteriorate faster. She seemed shocked but understood.

About this time, a high school classmate, Sue, strolled by with her elderly father, Jim, during a tour of the facility. He is considering a move from his home to a studio down the hall from MOM. After introductions, the elders found some common ground. MOM and DAD purchased their first Philco refridgerator from Jim just after WW2. Jim grew up in North Dakota, the same state as my Mom and Jim remembered making my dad a great deal on a 1940-something Hudson sedan. This is the reason I wanted Mom to remain in her home town instead of moving with me to S Indiana. These sort of connections give her a sense of belonging, of rootedness and comfort. It is just what she needed.

Now to help her find it again.... tomorrow and the next day and the next.... I hope to help her find them on her own because soon I must return to my own home and work. I got a list of other residents and tomorrow we'll go over it and wheel around to their room and look them up. God, I hope they can carry on a conversation!