Memorial Day at Mom's house was nice, she didn't mind returning to care center

Mom's been asking to see her little house and yard but we've been afraid to take her home.  We didn't want any sad crying scenes or to send her into a seizure if she became too upset.   We've tried to avoid excuses and honestly, it's been too cold or too wet for to take her home until this weekend.   My cousin came over, we picked flowers from her garden and made bouquets for family graves then went to get Mom. She sat in the car while we left flowers on graves.  She got to see each bouquet and know that roses grown in HER yard honored all those we loved. It meant a lot to her. We joked briefly that we placed more bouquets on graves than we had people coming for lunch - a sad statement...

After the cemetary we went to her house where my brothers and other family were waiting.  We had a nice lunch and all sat together at the table with Mom at the honored "head" spot.   She was very happy and ate a good healthy plate of food.  She was especially happy to have coffee and pie after supper - she doesn't get much pie at the nursing home.  

When talking with her before going to her house I used my mantra:  "it's not safe, the wheelchair is too big, the bathroom too small, the doorways to narrow, you can't be alone anymore..."  She can't argue with these..   Mid way through the day she had to use the bathroom so I helped her. I had a plan to do it and walked through it a couple of times the day before. My plan meant moving her from the wheelchair to a seat on a walker then onto the toilet.  We did the same routine backwards to get from the bathroom back into the wheelchair.  I was concerned since each transfer means a risk of falling.  It was SO much work and I was so worried she'd fall or that I'd drop her.  She tried to pull herself up to stand at the sink but could not. She ended up falling back onto the toilet and sitting there for a few minutes.   After getting her re-routed from toilet to walker to wheelchair she said, I guess you prooved your point, I can't use the bathroom.  She was calm, not too upset but just matter of fact. I didn't say I told you so, I just said, .."yup.  I wish it was different but your safety is our priority."

When it was time to go, I told her we'd have to deliver some supper to a nephew, look at his new house and then take her "back". I feared she'd become upset but she didn't. She was just fine and willing to go. It was a huge relief for us all.   This evening, a day later, she asked again, "How long do I have to be here?  Do I have to spend the rest of my life here?"  I applied the safety mantra again then changed the subject.  I have a feeling that I'll be using it weekly from here on. 
Mom says she wants to go home all the time, she makes me crzy nuts.   I am so sick of hearing Mom demand to go home.

Mom's regrets influence me now

For the past several years Mom has expressed regrets about things in her life.   Each time we're together for more than a couple of hours she comes around to talking about them.  She's told me so often that I can almost quote, word for word, what she'll say about each instance.   Th regrets aren't about physical things she didn't have, not about places she didn't visit nor things she didn't do for herself.  Her regrets are about things she did not do for others.  Her regrets are about the people in her circle of friends and family that she could not or did not help. 

She regrets her parents divorce even though she was an adult; she knows how lonely each was in their elderly years. She regrets not pushing grandmas doctor to treat arthritis pain in grandmas back. She regrets that she didn't do more for a sister-in-law with chronic and painful migraines.  She regrets that my cousin could not have moved in with them. She wishes she'd done more for her grandchildren, nieces and nephews.... and on and on....

To understand why she didn't act, you have to understand a bit about my Mom.  Unless she gets really mad, she is not a confrontational person and she tries to be very polite.  At the time these events were going on, she felt it was rude, nosy or outside of her comfort zone to question, to comment or to act. She left things alone - and that's often her biggest regret because she saw events take an emotional and physical tole on people around her.   She regrets not acting to ease their discomfort or pain.   She regrets not saying or doing things to make people around her feel loved and supported. 

It's a difficult situation for me to understand because I saw her do so much for others. I try to live "up" to her good example with family and friends.  I don't understand why she's so hard on herself so I tell her just that.   I begin each response to each regret with "You're too hard on yourself; you did what you could at the time."  Now that we've made hard decisions about Mom and her care - now that I am primarily the one making the decisions and telling her about them - I hear my husband and family repeating the same things to me and to each other.   While I regret that I don't see her more often; I regret that she's not in her own home; I regret that she's no longer agile and strong - I won't regret moving her some place where she's safe and where the helpers treat her with affection and respect.  And, I'll learn from her regrets to show love and support when I can.

Don't expect to control absolutely EVERYTHING...

Control; it's a very simple two syllable word. However, for me it also raises some complex situations these days. I want control. My mom doesn't want to give up control. I can't control doctors or aides. I need control to safe guard her finances, her health, her physical safety, her emotional well being and to very simply get things done in a timely fashion. Going through this with Mom has helped me to apply the old prayer: Lord grant me the strength to change the things I can, the patience to live with the things I cannot and the wisdom to know the difference. The wisdom is truly the hardest of all.

I've learned to wisely "position things", to "discuss", to finagle, to... well, maniupulate Mom and others to get things done. I don't like to use the word "manipulate" but that's what all of this positioning, discussing and finagling means - I must use my best manipulative behaviors and it's hard for me to do. Normally, I hate manipulators and I'm vulnerable to such people. I feel like a hypocrit but in this case I must feel okay with it. Sometimes it is wise to manipulate if it's for an unselfish and positive outcome. I use these skills so that Mom feels in control of the decisions concerning her life. I try to ensure that she feels heard; that she has some input over what happens - that it's HER decision or preference.

It's wise to understand when I CANNOT control something. I can't control the doctor's schedule, the type of toilet paper the ALF uses; how the ALF does laundry' whether my brothers visit or not. I can only control what I do in these instances. I am forced to ask myself whether I can do something about such situations. If I can do something, I will. If I cannot , then I wisely, give myself permission not to act, not to try and control. if Mom makes comments or asks for something I can't do anything about I try to talk it over with her and let her know I empathize. I ask what she thinks; what she wants and try to work on those if possible. Giving myself permission not to act, not to have control is really freeing and much less stressful.

I realized discussing control here in my blog was important after having lunch with a friend last week. Her elderly and frail in-laws just moved from their home to an apartment near her family. The intent of the move was completely honorable and she and her husband are doing all they can for his parents - more than many people might do. But, my friend must realize - for her own sanity - that she can't control absolutely everything. My friend complained that she sent a list of requests to the doctor with her mother in law. The list included many details, requests for tests and information; when the elderly in-laws came home, only 2/3 of the list was completed. My friend was upset. "Now I'll have to spend hours on the phone making these requests and pusing to getting it all done." The things left undone where basics like cholesterol checks, fecal smears for colon cancer and drug interactions. I thought - 2/3 of it was DONE?! Wow, I'd be happy with that!

She was so upset that I didn't dare say anything at this point but did try to take the heat off her in-laws by pointing out that the doctor might not be able to do the tests due to insurance restrictions. In this case, she wanted a whole lot of control. She wanted to know all of this information and wanted it all done by the new physician as a baseline for their care. It's an honorable intent but not necessarily possible. In a day or so, I'll send a card and write the poem about change and mention a word or two about control. I hope she'll get my message that we can't control everything all the time and to try that will only make YOU feel worse. If you're trying to control too much or too many people, think about whether you CAN do something that will have a positive outcome. If not, let it go. Your parent needs you to be positive and healthy as much as your spouse, your own kids and as much you do for yourself.

Doctor limits new ALF choices causing problems for me

After a week Mom's doctor finally called me to discuss her situation. He feels that her needs mean she is on the high end for assisted living but not ready for a nursing home. He recommended two small in-home assisted living facilities. I visited both and believe Mom will hate them both.

The first was brand new, open, beautiful, the ladies warm and friendly but the owner/manager/main care giver has a small dog that jumped on me, growled on me and she didn't seem to care! The owner/manager/care giver is also a very small woman and she's there alone most of the day. I fear that she cannot physically provide the help Mom needs. I worry that mom's too far gone to live in this ALF. I can only imagine how mom would feel about the dog. She has never liked animals in the house and given her vision problems a small animal walking near her feet would make her fearful of falling over it. The growling is a completely different matter. The owner said the dog "likes to talk to people"... It growled at me, in doggie speak that is a hostile action and it should not be tolerated around elderly residents. The other disadvantage of this ALF is that they do not accept medicaide.

The second home was smaller, felt warm but the room available is shared with a failing 92 year old. Mom would hate that and it has a nursing home feel. They are more flexible especially with meal times which Mom would appreciate. She could sleep and eat on her prefered schedule not the ALF schedule. This place is also willing to accept medicaide so Mom can stay put if we can't sell her place.

SO - today, I'm doing another dreaded and stressful task - taking Mom for another visit. My brother and I spoke to Mom about moving during a Saturday evening family supper. She said she does not want to move; that she finally feels like she's getting acquainted and visiting with others. She's met a few people who are long-time acquaintances but several of those meetings were possible ONLY because I visited and took her to the large living room and outside where others gather. Normally she will not ask someone to take her there or attempt to go on her own. I will take her to the facility without the dog. If she does not like it, I'll take her to the one WITH the dog and see what happens.

I must say that I feel stymied at each turn; I feel it's a no win situation. Our options for facilities seem so limited; that's due to several factors - Mom's condition, her stubborness, her doctors preferences and opinions, the rules and conditions of each ALF and her possible need for medicaide. Ugh.

Don't wait too long to move your parent

I fear we waited too long to move Mom. We worked hard for several years to keep her at home, until her arthritis made her too weak to do even the most basic things and she neglected to take her medication. We thought we did the honorable thing, working together to keep her at home. But, in the long run, it may have been a mistake.

At this point she is so weakened and crippled by arthritis, especially in one knee, that she can not walk from her room to public areas of the assisted living facility. She is unable to walk, unassisted to meet other residents and refuses to learn her way around. She is isolated and lonely. She feels more alone than ever before in her life and there is nothing we can do about it. We try to visit often, the care givers offer to help her walk but she is unwilling to call them.

This morning I visited Mom and she asked to go home again. I had a pretty bad migraine headache and was quite frustrated after hearing this daily for a week. She has also begun to accuse the aides of intentionally doing the opposite of what she asks which is NOT at all like my mother. I knelt on the floor then sat back on my heels in front of her recliner and broke into tears. Mom apologized and said "I'm sorry to be such a burden..." I told her that it's not a burden but that she must realize that she has severe limitations now and that we just can't take care of her at home. She craves conversation with people she's known for years; the problem is that many of them are dead. Those still living are demented or too deaf to communicate. She wants to share memories and laugh with people who shared her experiences but it is impossible.

Making her totally content is impossible so we must be thankful for moments when we can make her laugh or smile. It's hard for us - the family - to accept that we can't make every moment happy. At least we are going through it together and we're able to help her enjoy things SOME of the time...

Why not just move your mom to YOUR new town....

I live 2000 miles from my Mom and travel to see her about every 6 weeks. UGH! It's a scheduling and financial burden but I feel it's best for her. I can't tell you how many times well meaning friends suggested that I move mom closer to me and even implied that I'm a rotten daughter because I didn't do it! Needless to say, those folks are OFF the friends list.... Some friends can't understand why I travel so far so often to see my Mom. Here's my reason for leaving Mom in her home town:

Consider my Mom's condition: 88.5 years old, stiff and weakened from arthritis, and lived in the same house for 63 years. She retained friendships through school and church from the age of 12. She does not have the time to make new, deep friendships and experiences. She is NOT terribly forgetful or demented; she doesn't sleep the whole day away. She remains curious and intellectually aware. I live more than 6 states away from my home town where Mom still lives. It's a different geography, climate and a totally different type of people; they are not welcoming to strangers. Making connections is important to my Mom, it gives her a sense of "rooted-ness"; she could never make those connections if I move her to an ALF where I currently live.

Here's an example of the type of connections I mean: the maintenance supervisor at her ALF is the grandson of my Grandma's friend and neighbor, Mom met him years ago as a teenager. Another resident is the widow of a long-time neighbor and just recently two members of Mom's church congregation moved into her ALF. THESE are important connections that help her feel secure. These connections give her a sense of community within the ALF and thus help make it HOME. She'd never find these if I were to move her 2000 miles away. It's easier for me to travel to see HER rather than force her to live without this sense of connectedness. It's a relief to write about this here; those same snide people who made me feel like a rotten daughter would not take the time to listen to these good reasons. When it's their turn to fill this role, I hope I forget their attitudes and can offer some kind support and wise advice that benefits their parents .

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.

The decision is made.....Moving day April 15

I finally made the decision to move Mom to an assisted living facility and even set a date. Now come all of the lists that I need create to get things done and to deal with the emotions that we'll both feel. I have lists for the practical things to prepare and set up her apartment and also lists of the things we might feel and lists of strategies to handle the emotions. I'm not anal retentive or a control freak, it's just how I deal with things. I try to anticipate and then be prepared.

Last evening while gently telling her that the movers will arrive next Wednesday to take most of her things she was concerned about the long term. She's not prone to dramatics but bowed her head, talking and sighing at the same time, "Will I have to be there (big inhale) forever..?" She nearly moaned the word "forever"; it really made my heart heavy. No, I promised. And I mean that. If she hates it, I'll find another solution. I have no idea what that is but I'll find something.

As we get ready for next Wednesday, here is a list of my lists:
- things we need to do at her home so she feels okay leaving it
- things to take to the apartment, sentimental and practical items she needs to feel comfortable
- things to buy for her; that enable her to some things for herself (
- people to notify of the move

Now the questions:
- How does the new facility get her meds and how and when do I pay for it?
- Are they willing to use her existing pharmacy?
- Will they give her snacks with her meds to help her avoid heartburn?
- Can i spend the night in her room if she needs
- How do I make them all understand the symptoms of an approaching seizure?