Another day, another fresh hell

So today was ALMOST a good day. My sweet sister-in-law took over today with the folks, taking mom to see dad in his new place. I guess they had a lovely afternoon, but as she was trying to leave Mom in her apartment at the memory care, mom got extremely upset and begged to go home with her. So my sil called me to ask if I thought that was a good idea. My husband, my HERO, got in the car and went over there to calm Mom down. This is just dreadful.

Tough Decisions

Here's an open letter to my family:

I would like to arrange a tour of Hope Memory care when Matt and Steph are in town next week. I was thinking perhaps Thursday (10/26)  late afternoon, so Dave could come by after work? Maybe 5? or 6? I think that Tammy would meet us whenever. I want you to see the place and hear her "pitch."

I know we all agree that the ultimate goal is to have mom and dad live together forever. We have a tough decision to make in the next 30 days - whether to move Dad back to Delmar or to move Mom to Hope Memory Care. There are pluses and minuses on both sides. Here are a few:

Delmar Positives:

•  It is beautiful, and mom and dad have adjusted to life there. 
• The new activities director is young and energetic, and trying to increase the amount of stimulation the residents have there. 
• Many of the staff members are caring and competent. We love Donna and Tiffany. They are awesome.
• If  M&D stay in memory care as they started out, it is less expensive than Hope. 
• They do have Medicaid rooms in skilled nursing, but I have been told from many sources that they don't extend that privilege to dementia patients. This means that as they use up all their resources, they would sign over the pension to Delmar Gardens and get a room until death. I will be checking.
• It is closer to both us and Dave & Casey.

Delmar Negatives:

• I'm not sure they have a true "age in place" philosophy - meaning, they are committed to allowing both Mom and Dad live there until death. THIS IS VERY IMPORTANT. I am going to request a meeting with Kelly or Jennifer (the head honchos) to see if they can give a written commitment to that. If not, we could be waiting for the other shoe to drop and be scrambling for a place to put them. I'm also not sure they can guarantee a place for either of them in skilled nursing, next in line below memory care.
• If Dad moves to skilled nursing at Delmar or we have to hire additional sitters (as Delmar would have required for Dad to return right now), costs will go up astronomically. Ad to that the fact there would be LESS care than they get now for much more money. It would not be safe or affordable. I don't think this a viable option.
• Per the hospital's request, Delmar did assess Dad  to see if he could return as he was being kicked out of the hospital, and their requirement was to send him to the mental hospital for a "geri psyche" (geriatric psychiatric) assessment. He would have been hospitalized 5-7 more days, and they would put him on more meds to "regulate" his moods since he had been trying to get out of bed and had been in restraints. Restraints are not allowed in Assisted Living. Now I am not against mental health meds, but I don't think Dad needed that. The doctor told me he had a UTI, and that could have been why he was trying to get out of bed. Makes sense to me - if you've ever had one (as I have), you feel like you have to pee all the time. Misery.
• Donna, who runs the memory unit at Delmar, told me many times since Dad's hospitalization that Dad's size is a problem. She said she can't run the risk of her staff members hurting their backs to handle him.  She told me that if he fell, they would call 911. That means the paramedics come out and lift him up. I've been told that they won't do that forever. Doesn't seem like a solution. Up until now, Dad has been able to make it to the bathroom with great difficulty (as you know back at the house he did too). Now he can't toilet alone. And they leave them alone a lot at Delmar.
• The way the memory care unit is designed, there's a lot of walking at Delmar. Yes, there are people in wheelchairs, but the policy is they need to ambulate themselves. And they need to be able to transfer from chair to toilet and back. Dad cannot do that alone at this time. I hope this skill will return, but just don't know.

Hope Memory Care Positives

• The entire building is devoted to memory care. Unlike Delmar, they divide the population by their levels of dementia. Dad is currently in the only area that had an opening - an area called "Wandering Brook." People there are "wanderers." They wander all around the unit. They know this is not where Dad needs to be, but that is where the bed was, and we had a bind. The insurance was going to stop paying for Dad's care, and rehab had rejected him since he had been needing restraints. I will be forever grateful to Hope for their willingness to take Dad IMMEDIATELY with little questions asked. Today, Mom and I toured the "Sunny Surf" section - where Mom and Dad belong. I wish you had seen Mom. She spoke with every resident, introducing herself and chatting. It was lovely to see.
• Mom and Dad CAN age in place at Hope. As long as they are not on a trach or feeding tube, they can stay until death.
• Dad's size is no big deal to the staff at Hope. They told me they have a man there who weighs 100 pounds more than Dad. Wheelchairs are also not a factor. I have witnessed them help him toilet, with the thought that Delmar would not be able or willing to do that.
• All activities at Hope are for the Hope residents, unlike Delmar, where many of the activities are limited to the IL and AL residents. They have outings too, something not open to Delmar memory care residents.
• The entire building is one level - no elevators. It is very accessible throughout.

Hope Memory Care Negatives

• It does not have the amenities of Delmar Gardens, which I have heard described as a "cruise ship on land." No beautiful grounds, swimming pools, putting greens, beautiful dining rooms (although Mom and Dad only eat there with us).
• Yes, there was a urine smell in Wandering Brook, and yes someone had just peed on the carpet (which is going to be replaced soon). But that is not where M&D will be staying, and I was there for 4 hours today and noticed no smell.
• It is more expensive than Delmar's current plan we have. However, if they go back to Delmar, the prices will probably increase a lot, and the price at Hope could be actually cheaper.
• It's a new adjustment for M&D. I don't like that either, but I think they will adjust the same away as long as they are together.

I just want you to know that I went over to Hope to sit with Dad through breakfast, and Bill picked up Mom and brought her over to visit Dad and see the place. They were sitting together holding hands, and we left for a few minutes to pick up some supplies (Dollar General is right next door). We walked back in, and Mom greeted us with, "So am I moving in here? Because we just want to be together." She really liked the place, and I am confident she would fit right in. And Dad is good as long as she is with him. He told me before I went to Indiana, "I don't know what I would do without my wife."

Unexpected Zappos Encounter

I'm typing this with tears in my eyes. Back story: I ordered a pair of LARGE slippers for Dad from Zappos. His feet are swollen with  lymphedema and the only shoes we can get on his feet are his tennis shoes which are barely closing. So a friend recommended this brand (Old Friend) and I tried a pair of 15 wides but they were too small. I love the Zappos company - the nicest friendlist people, so instead of returning via internet I called to talk to someone. The lady that answered - Ellie - was obviously from a different country by her accent. We had some miscommunication because she thought I said I was returning these shoes for my daughter.  She said something like, "I'm sorry these didn't work for your daughter" and I got a bit prickly and said, "They are for my 86 year old father - yeah that would be a funny story to tell your coworkers about a daughter with size 16 shoes!" Anyway, she proceeded to tell me - very nicely - that she envied me that I had my father in my life. Her father has not spoken to her since she got pregnant and had to drop out of college. He told her she was his failure. I was shocked. I asked, "How old is your child now?" Her answer: "Twenty-one." I was so embarrassed and humbled by my initial reaction. The trite statement is so true that you NEVER know what someone is going through.

Sandwich Generation - Dubious Distinction Finally Earned

Many of my friends have been in this "wonderful" club known as the Sandwich Generation for many years. I have heard about it, but knew I was not fully a member . . . until recently. Because we baby boomers are parents, grandparents, and sometimes called to "parent" our own parents, we are sandwiched between the generations. Well, I'm finally there. My two parents, aged well into their 8th decade, have become my responsibility. Yes, this role is shared with my brother, his wife, and my husband, and yes, they live in an Assisted Living facility who also care for them, but I am now the conductor of this complex symphony. And it is not easy, or for the faint of heart. 

Yesterday was one of many firsts that I could have lived without. My father had on no underwear beneath his pants. I had to locate a pair of Depends, sit him on the bed, have him remove his pants, assist him with putting on underwear, well....you can imagine the rest. We did it again today, so now it's not as shocking to him or to me. 

Having two parents who have dementia at the same time is an added challenge. They both have different sets of problems, and it is really a challenge to take care of both. For example, my Dad has a physical problem called lymphedema with his legs. The treatment requires us to take him every day for at least a week to have his legs wrapped. They need to stay wrapped 24/7 for a week. We took mom along because I think she would worry where Dad was if we took him and left her at the facility. But she was getting more and more quiet and concerned about what was happening. I know she's more confused than ever. To try to help her feel better, I'm going to take her swimming this afternoon. Back to Dad's physical issues: he received his first of at least 7 leg wrappings yesterday afternoon. We took him back to the facility afterwards, returned them to their apartment (they are locked in a memory care unit), and reminded him to keep his legs elevated, do his exercises, etc., and that my brother would see them tonight. Which he and my sister-in-law did, and all was well. Well, we showed up the next day at 6:15 am to pick them up to take back to the clinic, to be greeted with the wrappings in a heap on the floor! He did not remember removing them.  More tomorrow - I've got to go to the store and buy him a belt (his pants are falling down), and some pants with elastic waists. Then I'm taking mom swimming. It's a good thing I'm retired!