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His First Year
May: Deliberate blindness
Other family members will not want to see what is happening, to see the decline – while the care-giver is becoming all too aware of the reality of the situation because they live with it every day. Furthermore, there is a well known phenomenon where an Alzheimer's patient can put on a façade of normalcy for a short period in a social situation. And the Alzheimer's patient will still remember being a fully competent adult well enough that they will want to assert their independence, even though allowing that at this stage would be neglecting to provide proper care. This can put a care-giver at odds with the rest of the family or friends of the patient, and builds resentment the care-provider feels towards the patient.
Beyond that, “May” is the month where the various stresses and strains start to manifest, having an impact on routines and alerting care-givers as to what may be in store in the future. Relationships undergo new and different types of strain, having an effect on all levels, generating inter-personal stress between husband and wife, between siblings, with co-workers and business associates. Some of those impacts and fractures will surprise you – they are often unexpected, and can come from areas that the care-givers had assumed were "stable" foundations and walls that could be relied upon for support. Particularly those who haven't been in a care-giving role for someone with dementia will just not have the tools to understand what the care-giver is going through. This contributes to misunderstanding and isolation.
Almost all affected areas will take time to heal. If they can ever heal. But you can't worry about that now – you're in the thick of things.
One thing which isn't mentioned elsewhere in this memoir is the problems which care-giving presented to Martha Jr's business. She had been in a long term architectural partnership that was well established and respected. But her time in her office, and her ability to focus on the work clients needed doing, started to suffer – yes, Jim was the primary care-provider, but there was still much which required Martha Jr's time and attention. She had the Power of Attorney, and was the only one who could sign the necessary forms for medical treatments and so forth. Plus, Jim needed some respite upon occasion to conduct his own business or just get away from the house for a bit. Further, Martha Jr was 'on call' overnight half the time – which will exhaust anyone after a while.
So, Martha Jr's energy and enthusiasm for her work dropped off, and she spent less time in the office. Her partner had cared for her own mother through hospice for cancer, and was sympathetic for a while. But since caring for Martha Sr was a matter of years, rather than months, there was tension and resentment about Martha Jr no longer pulling her share of the load. Eventually this led to the breakup of the partnership.
(Email excerpt, Martha Jr to the family. 2/16/06)
Just a quick note. We've had the construction guy here for the last week working on the bathroom remodel. We've got a ways to go on it – right now there are bare walls and no fixtures.
This has apparently discombobulated Mom [Martha Sr] quite a bit because she is exhibiting some rather strange behaviors. Some of it may also be related to her friend Neva having died last week. At any rate, she has become more difficult and we find we must monitor her more closely. Because of her increasing 'forgetfulness' about not getting up without assistance, we had moved last week to having 'safety straps' (like loose, lightweight seatbelts) in her chairs as well as across the bed from rail to rail. This is to help her remember to call one of us if she wants to get up. The chair straps were just loosely buckled around her so that she would need to call someone.
But today we had to tighten them some. No less than three times did she try to get out of them without one of us around. The first time, she succeeded. I was outside helping the fellow who was delivering fence parts. (Jim was away at a support group meeting.) I had told her where I would be for just a bit, but when she heard the truck (she was in the chair in the front room) she 'just got curious' and had to get up to look. Apparently she wriggled out under the strap (she hasn't been able to unbuckle them) and stood up to look out the window. When she couldn't see anything from there, she moved along the couch to the other window. When I came back inside, she was sitting on the floor at the far end of the couch, having fallen. She wasn't hurt, fortunately, at least not seriously. Very contrite, 'this will make me remember not to do that.' (Suuuure it will.) That was about 11:00. At noon, she had lunch in the kitchen and, as I was about to get her up to go lie down afterward, about 1:00, we noticed she had apparently scraped her wrist when she fell and it was bleeding a little. Jim had just gotten home. So he was still in the kitchen doing other things while I was looking for the bandage stuff (which I didn't pack away very intelligently when we cleared out the bathroom). Before I got back, and with Jim standing right there, Mom tried to push herself away from the table so she could get up to go lie down. She had already forgotten I was looking for a bandage, or anything else. We got her wrist cleaned up and took her in to lie down. About 2:30 (the usual time Mom calls to get up) Jim heard her fussing with the clasp on the bed strap and went in to see what she was doing. Well she was 'just trying to get this undone so I can get up.'
I keep thinking that she can learn, in the way a child can, but she just can't. She can't remember the 'rules' long enough to abide by them. Every time her behavior slips a little further, we have to ramp the vigilance up a little more. It can be very scary to come upon her trying to stand up, because if she were to fall and seriously hurt herself while under our care, it would be our fault. I'm sure it seems 'mean' to her, but what else can we do?
Just wanted to keep you informed of what's happening.
Love to all -
(John’s diary. 2/5/04)
Kathi's having trouble dealing with my impending absence – it's really hard for her to "manage" Georgia. We contacted the National Alzheimer's Org at the house, & scheduled for them to call back early this week.
Still have to take care of several items...
Regarding writing, I need to take stock of my growing stock of concepts and excerpts, and begin the serious work of putting them together in a coherent form. I want to develop and complete the stories – esp. since I do believe I can make a good living as a successful writer. Unfortunately, my office at the house is compromised by Georgia's rummaging. She claims not to touch anything, but can't recall her actions – and things move and disappear. She's high-functioning enough to that since we're living in her house, her space, we have to tolerate the rummaging, and are unable to do much to protect our "stuff."
Errands for today: Library (Thomas Crane in Quincy), a hat, and perhaps a safe (or two). We also need to investigate home security systems & phone recorders. Our big concerns at this point are that someone will realize that Georgia is a susceptible "mark," and sell her a product or service that she really shouldn't have.
We saw my parents last night. Dad was very concerned about the situation with Georgia, & wanted to know how he could help. He gave us the name of a lawyer who may be able to advise us re: the house, elder care, and financial matters.
Comment from John: Two important items come to mind here:
1. Georgia was always used to learning and doing things on her own, so when she saw ads on the TV for a computer learning tutor, she ordered it. Yes, she still had control of her credit cards – and knew how to use 'em.
The software was too difficult for her, which disappointed her greatly; she'd wanted to have the little victory of learning how to use Kathi's computer, and not being able to figure it out was devastating for her.
2. Always the fan of old movies, Georgia's eyes lit up with the repeated barrage of offers for collections of CDs and tapes for various old movies. She managed to order a complete collection of Shirley Temple VHS tapes without either of us noticing.
She never watched a single one of them.
(John’s diary. 2/25/04)
Last few days busy, and productive (at least in terms of the client's implementation). Kathi's been "managing" Georgia, albeit with some difficulty. Alzheimer's Disease is definitely one of the most difficult to deal with.
(John’s diary. 3/7/04)
– Villa Rosa
Home (since Sat. AM) after a prolonged trip to see a client in New Jersey for their go-live. Hadn't expected to be gone the entire week. Kathi was unhappy, trying to manage Georgia by herself, but Kelly & Cheryl both helped out. Kathi, Cheryl and I took Georgia here Monday night – it was the first time Georgia met Cheryl – as a prelude to Cheryl taking Georgia out to dinner on Wed, which was Kathi's "late" night. We already knew I'd be away Wed.; I was planning to leave at 3-4 am Tues. (made it out by 4:30)
Today was a bit frustrating. I'd planned to stay home with the dogs and get some things done – lots of catching up to do – and lost a significant chunk of time when I had to run down to Allerton House (where Marge resides). I'd gone to a bookstore to get the Large Print magazine we like to leave with Marge. Georgia got impatient and insisted that she and Kathi leave immediately, which turned out to be less than 5 minutes before I returned. I'd told Marge that we would get the subscription for her, and Georgia said she'd pay for it (not that she'd remember), so – since I'd forgotten to take care of it – I felt it only right that I pick up the current newsstand version. I was angry when I got home & found that Kathi had been unable to "manage" Georgia until I returned. Drove down & dropped off the mag, saying "Thanks for wasting my time" to Kathi. Georgia asked if I brought the dogs. I told her – a bit harshly – that I'd left them home, because I'd had work to do and hadn't planned on attending save for the fact that they couldn't wait for me to return. I apologized to Marge for not submitting the subscription yet & promised to take care of it when I returned home. Kath reminded Georgia that she'd wanted to leave, not wait. I left.
I'm sure it bothered Kathi – I know she's trying, and under a bit of pressure to take on & excel as wife and daughter. I'll have to try and help her – alleviate the stress – and make some of it up to her. She does have to learn a bit more about being more "the adult daughter" and managing her mom rather than just being a "daughter/enabler."
*Serendipitous Moment: Kathi just called. I apologized for being a bit hard on her – she understood, though I'm not sure if she let the stress go or not. They're on the way here now – I ordered another Tang & Tonic for myself, a Cape Codder for Kathi and a 7-Up for Georgia.
While speaking to Kathi, I suggest she take Georgia out somewhere after we have lunch, so I can still have some "quiet time" at the house without distraction. I think they'll hit Job Lot or WalMart. (I'll suggest both, or just WalMart.)
(Email excerpt, Jim to Martha Jr's sister. 8/7/04)
I’ve been thinking about a comment you made last night, and thought that I should drop you an email. It’s about Em’s most recent visit.
First, let me stress that I’m glad that she came, and had the opportunity to spend some time with Martha Sr. It certainly brightens Martha Sr’s life to have her family around her, and that’s something we all rejoice in. Em is welcome with open arms whenever she wants to come visit, both because we love her and enjoy her company, and for the joy it brings Martha Sr to have her here.
I know Em felt some anger about how Martha Jr and I interact with Martha Sr, as you indicated in your comment. I don’t know the details, nor do I wish to, since Em didn’t discuss the matter with us. But while she was here, her disapproval was palpable upon occasion, and sometimes so strong as to be hurtful. I attributed it then, as well as now, to transference – it is not an easy thing to see a loved one declining in physical and mental abilities, and that frustration and anger has to vent somewhere. I doubt that she was even aware of how it effected her at the time.
But it was there nonetheless, and as I said, sometimes so strong as to be hurtful. Both Martha Jr and I felt it, even discussed it, and I’m sorry if there was stress between us and Em in response. Yet that was a natural reaction, a certain resentment we felt. It’s one thing to be here on a visit as a vacation, and to dote on Martha Sr, another altogether to be caring for someone around the clock, week in and week out. Em was free to come and go as she pleased, didn’t have the responsibility for being on-call, yet disapproved of us in our routine and care of Martha Sr. It chaffed. I think that was probably what led to Martha Jr’s friction with Em.
As I know you have seen for yourself, we’re doing our level best to care for Martha Sr, manage her affairs, keep up the house and grounds, and still make time to see to our own careers as best we can. While we consider the opportunity to care for her to be a great gift, it is nonetheless demanding. Your coming out to visit and help care for her, to give us a respite now and again, is a real godsend, and I cannot thank you enough for your kindness in doing so.
Well, like I said, I just thought that I should drop you an email, let you know my observations on the matter.
(John’s diary. 4/4/04)
Georgia's been OK. Subtly worsening. On Friday, while I was working upstairs and it was cold and misty outside, she decided to walk up to the store to get bananas. She hadn't seen (possibly hadn't even looked for) bananas already in the hanging basket.
When I realized she was gone, I went up to the Fruit Center – surmising that was her target. I notified a Milton police officer, providing a description, and we checked the store. A cashier recalled seeing her just minutes before. I caught up to her as she headed home, then swung back to let the Milton officer know that I'd caught up. Georgia was a bit mortified, and still speaks of the event even though she oft forgets other questions or incidents right away.
I called and told Kathi about the incident – she was at work – and she cried. It's a tough disease – on everyone. I was able to reach Rosemary, the "tutor," who was able to come watch Georgia until about 2:45. That enabled me to go to the Warwick office. I brought the dogs with me.
Georgia enjoyed the company, but after she had time to reflect (and I think realize that she was being "babysat"), she told Kathi that she didn't want Rosemary to come by anymore. We'll still bring her in – hopefully, Georgia will accept that.
(Email excerpt, Martha Jr to her sister. 8/18/05)
We need to talk some more about the issues of people visiting here. I know Mom [Martha Sr] has always had an "open house" policy of sorts, that we could all just call and say "I'm coming" and have a place to stay. But since we've moved in that really doesn't work any more. Even besides the fact that we don't have six bedrooms any more. And it especially doesn't work if someone calls Mom and tells her they're coming without talking to us as well because, as you know, Mom won't remember long enough to tell us. We need some consideration in the planning stages.
As you know, we are about at the limits of our abilities to cope with taking care of Mom 24/7. (I hate that term, but it does work.) Your visit gave us a welcome opportunity to get away and relax a little (thank you VERY MUCH). But when we're here, with any visitor, we still end up doing all the things that are necessary to keep the place going. Since Jim is home all day, he tends to bear the brunt of the 'house elf' chores, especially since his tolerance for clutter/mess is much lower than mine. Your help with Mom, keeping her occupied, etc., was very welcome, but Jim still felt a lot like a servant. (As he put it, he feels like he's running a hotel or conference center.) When other family members come, they never seem to take any responsibility for caring for Mom, so we don't even have that help. Here's something that Jim wrote to a good friend:->
“My resentment level is really high, and something has to change or it's going to hurt my relationship with the rest of the family and even my wife. I think Martha Jr is going to discuss it with her sister Susan, start there. Because while it is good for Susan to come visit and help out with her mom, I still wind up having to play housekeeper for another person. With other family members, we don't even have the benefit of them being on-call or dependably around so I can get away or do something I want to do without distraction or being tethered here. I've about reached my upper limit on putting up with it.”
As you can tell, he's pretty fried. It is indicative, I think, of how stressed he is being the day-to-day carer for Mom. I asked him this morning if it would help if we got someone in to clean regularly again, and while he indicated that it might help a little, it would also be an intrusion into his private space again, and he never likes that, so it probably wouldn't help in the end.
That is one of the biggest problems, I think. He is a VERY private person and, for him, home is his refuge. It is supposed to be the place where he can get away from daily stressors but, in this case, it has *become* the major stressor. When he starts feeling like he's being asked to do even more, he starts to resent it. Another quote:
“Well, part of the problem here is that much of the rest of the family (Susan has a much more realistic idea of the current situation) thinks of Martha Sr as being in full capacity, able to invite them to come and stay, play host...be her caring, nurturing self...when in truth it's me and Martha Jr who are the support staff, on top of being responsible full-time for caring for Martha Sr herself.”
Now, I don't want to discourage anyone from coming to visit Mom, especially not you, but we need to keep track of the fact that it is our house, too, and any additional person here means more work for us. Mom always wants to revert to the 'gracious hostess' mode, which is as it should be, except she can't actually *do* any of it so we end up doing it. And Mom has a bad habit of forgetting that Jim is actually her son-in-law and treats him rather like a servant, especially when someone else is here.
I don't know what the best resolution is, but I know we need to figure out how to make our lives less stressful. We want to continue to care for Mom as long as possible, and I don't believe it is yet time to consider another living arrangement for her. It might help when people visit, if they're not going to take some of the responsibility from us, that they stay somewhere else (like maybe with John) and just visit. That sounds a bit harsh, and I don't mean it to, but that's one option. Do you have any ideas?
Comment from Kathi: We couldn't invite anyone in for the longest time because of the "Mom messes." Until it dawned on us to lock John's office door, she would go in there and shuffle through everything. Ditto with my desk, her desk, all of her books and papers, everything downstairs in the basement. The reason why I'm always on the state's lost property list is because she'd lose/tear up/who knows what with my paychecks. I'm still getting notifications from them...and to think back then that I was usually too stressed out to even realize I'd had them.
(Email excerpt, Martha Jr to her sister. 5/26/06)
Just checking in
Yesterday when I got home, I could hear Jim in the front room talking with Mom [Martha Sr]. I was putting my stuff down, so I couldn't listen to what they were saying, but Jim told me that she had called for me ("Martha?") – not remembering who might be home. When he got in there, she was futzing with the seatbelt in the chair, saying she needed to find out how to undo it so she could get up and go to the bathroom. They had the conversation (for about the 4,323rd time) about how she always needs someone to walk with her wherever she goes, and she denied she had ever heard of that.
After she finished in the bathroom, I took her back to the living room and got her settled in her chair, then I sat down and asked her what was going on. She said that she was provoked with Jim for telling her that she had to have someone walk with her. I told her that we'd been doing that for more than two years, and that we had discussed the necessity of it with her many times, but she was *sure* this was all news to her. So I explained again why it is necessary (because her balance is so bad, and her strength not good either, so that – even with the walker – she isn't stable enough to go by herself) and that we wanted her to be safe. I told her she is welcome to go anywhere and do anything she wants, but she just always needs someone alongside. 'But what if no one is here?' 'Someone is *always* here. ALWAYS.' She wasn't very convinced. I told her that I understood that her memory was getting worse so that she didn't remember things like this as well as she had, and that because of that she needs to trust us, that we aren't just being mean.
Comment from Kathi: reminds me when my mom's spinal stenosis got bad enough that she literally couldn't walk but kept insisting she could. She'd stand up and ask me why her legs were bothering her. When I told her it was actually her back and not her legs, she was totally dumbfounded.
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