Archive for January, 2010

My Dad has been giving heroic effort in taking care of Mom for the past few years.  It’s medal worthy, the sacrifices caregivers make in their personal lives to ensure the comfort of their kin with Alzheimers.  Dad is having a very difficult time adjusting to this new reality wherein his partner of 62 years no longer shares the same space.  As I feared, Dad needs guidance and care as much as Mom, and more importantly he needs even more emotional reinforcement since he’s still got all his “marbles”.  In my research on how I can help more, I came upon a terrific “playbook” written by Frank Boyles, Athletic Director Emeritus at the Univesity of Arkansas.  His wife has Alzheimers and he wrote a simple guidebook for caregivers.  You can download it for free at www.alzheimersplaybook.com for some pertinent and very useful information.  I recommend it for all families and PSW’s (personal service workers) who have exposure to this insidious disease.  Here’s a few pointers I’m gonna print for Dad.

– get away from the house

– go out for a walk

– meet friends for lunch

– go to a prayer meeting

– listen to music

– work in your garden

– read a book

– take a nap

– keep your sense of humor

– take one day at a time

– pat yourself on the back for the good job you are doing

– get enough rest and eat right

– make time for the things you like to do

– talk about  how you feel with others

– listen to your friends

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Had lunch with Mom today. Chicken soup, hot beef sandwich, peas and strawberries w/cream for dessert. Coffee and milk. Not once did I lift a spoon to help her. I did slice the beef, it was a tad tough. But she managed to eat most of her food, and on her own. Some very odd behaviour though. Used a teaspoon to drink her coffee. It was not hot. I let it slide. Hell, the main thing is that she is eating. Still not happy being in the nursing home. But we’ve made it through week one. I tested her vision and her eyesight is even more compromised than I thought. She can barely make out the large font headlines of a newspaper, and was guessing even at those. When we sat at the window, looking out on a bright sunny day, she commented that it was wet outside. So is that a perception issue or just another foggy memory surfacing? Whatever it is, it surely reinforces that Mom does need constant care. Dad, to his credit, stayed away today. The daily visits from kin can be a negative thing at this early stage. And that’s why I wonder if I did the right thing in bringing more photos today. I set up a scrolling LCD picture frame by her bedside with about 200 photos of various family stuff. Does that just make her adjustment more difficult or does it make her room homier? I suppose it’s a six of one/half a dozen of the other kind of scenario. It will give some conversation topics to her visitors. Hopefully they will come, even if only for a half hour.  It’s a difficult thing I know, to socialize with the Alzheimer sufferer, but the more time I spend with Mom, the more I see how important that social contact is.  Even though she had negative comments about the group activity in the home, I put that down to her general pessimism.  I don’t recall her once in the past year, being able to put away an entire meal without assistance.  That is definitely progress.  So we keep slogging on. Heading into week no. 2.

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Patience with patients.  It’s got a nice ring to it.  That’s one word that really captures what the Alzheimer’s patient needs.  Patience.  I’ll be sitting with my Mom, chatting with her (well mostly me chatting, conversation is difficult for her, trying to maintain a focus) and she’ll ask “Noh, when is that Hilary (me) coming?”  I draw a deep breath and remind her gently that I’m right here with her.  You have to shelve all your normal responses when confronted with such basic errors and continually remind yourself that the person you are with has lost quite a bit of connection.  As much as I like to think we can rebuild those connections, I am also realistic in acknowledging the likelihood of “real” improvement is marginal.  My Mom is 92 years old and father time is finally catching up with her.  She’s never again going to be directing any gymnastics/calisthenics classes like she did, even into her 70’s.  She’s blind in one eye and vision is fading in the other.  Her hearing is still OK, thank God for that.  But to watch her trying to clench and unclench her hands is a sad sight indeed, knowing her history and what marvellous physical activities she was capable of.  If she got more visitors that would help.  Seeing only Dad every day just reminds her of the separation, so for those of you who know her and live nearby, drop in and see her.  Help Mom rebuild her connections.

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Dad went to visit Mom today, as he does daily. Had lunch with her and said she ate well. That was one of my observations from the weekend. So what can account for that? Is it the fact her appetite has improved, or is it the food, or is it the attention of the staff? Or perhaps some combination of all three? The food is quite good, in fact I plan to join her for lunch this Thursday. There can be no denying that eating more and better food is a good thing. That’s almost academic. But nevertheless a significant improvement. As long as Mom maintains her appetite it can only lead to better things. More strength. More energy. More life. There is no denying she is a long way from accepting this new living arrangement. She went to get her coat when Dad was leaving, wanting to join him on his way out. But when the staff member offered to take her back to her room, she did take her arm and go. I try to remain objective and not read too much into the situation.  It’s heart warming to know that Dad is just 5 minutes away from the nursing home. You can visit as often as you like, but that’s gotta be such an emotional blow for him, knowing that they are just visits. Day five. This is so, so hard.

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From Berlin we had to go 53 km to the south, to a small town called Baruth in Mark. We turned to the local military commander who directed us to a house that bore the sign “Estonians’ gathering spot”. There we found colleagues who had fled our homeland earlier. It was the 11th of October, mid day, and we were to stay at this house until October 14. In those three days, we were visited several times by numerous army and SS representatives, among them Estonian SS commander “Obersturmbannfuhrer” Sandberger. We had to complete several questionnaires covering a multitude of topics. On the 13th of October, the local military organized a nice dinner for us in one of the local restaurants. We gathered on the 14th of October at the train station, and our guide/officer sent us on our way to Berlin. Upon arrival in Berlin, we traveled via the city line (subway, not streetcar) to the edge of the city, near lake Wannsee. A local constabulary was headquartered there (Reichssicherheitshauptamt). We were greeted there by another SS sturmbannfuhrer Lumm. He gave a short welcome speech. We were all interrogated separately and then advised that each of us would receive a ten day pass to arrange our family affairs. We were all issued travel documents to the destination where our family members were or would be residing, mine of course to Vienna. I sent a telegram to my wife and later that day boarded a train at the Anhalter station. My travel partner was a fellow Estonian. We decided to take the long route through Stettin and Posen (Poznan). The conductor and other train employees complained to no end about our “detour”, but the trip ended happily and we arrived, after a lengthy stay in Breslau, on the 15th of October in Vienna at Franz-Joseph station. My wife was at the station to greet us. She was staying with the couple we had originally contacted, but since they had just one room, which they also used as their kitchen, a longer stay at their place was out of the question. The next day, 16 October, we celebrated my birthday with them and then began a search for a new residence for my wife. We wasted three days trying to get information at city hall and various other bureaucracies, to no avail. I then got approval from the local commander to use a stranger’s house for the balance of our 10 days. At the end of the ten days, I managed an extension of a further ten days for my wife, and returned to Berlin. I informed my section commander that I had found it impossible to find a residence in Vienna for my wife, and surprisingly, I was given special permission to relocate her to Berlin! Berlin had large sections which were empty, following evacuation of the residents. It was still a target of aerial bombardment. I received another 3 day leave, and a return ticket to Berlin. By the 29th of October, we both arrived via separate paths, back to Berlin. At first we lodged in another stranger’s house, where also some colleagues were staying. I then decided to try to locate a home for my wife in Baruth. That ideal little town had stayed in my memory, and I liked it very much. She traveled there one morning, and arrived back in Berlin the same evening. Finally success! She had found a room in the house of the local forest chief. One less problem to handle! Soon we men were advised that we were being sent to Sudeedimaale to Marienbad where we would be in a small town of Tepli. We left on the 2nd of November and at the same time my wife left for Baruth. Upon arriving at Tepli in the morning of the 3rd of November, we were directed to the camp near the entrance to town, where men of many nationalities were congregating – men from the Russian POW camps who had been “liberated” only to be conscripted into the German army. We stayed there until November 16th, killing time primarily by playing cards and walking around; no jobs were assigned to us. On the 15th of November the SS commander Lumm arrived, and made clear what responsibilities were to be assigned. I was assigned to East Prussia to Hohenstein, reporting to the chief commander. That meant leaving Berlin on the 30th of November. I had until the 30th to spend freely with the only stipulation that I had to find a uniform. I was given travel documents to leave Berlin and then on to Hohenstein. On the 16th of November I left for Berlin and from there directly to Baruth where my wife was staying. My wife had settled in, quite comfortably, in the house of the area forest overseer. She was treated very well there. My days there were ideal; weather was beautiful, warm and sunny. We spent our time hiking in the forests. But each day my mind drifted closer to Berlin, since sourcing out uniforms occupied a large part of each day. By the 30th of November, I was ready to leave for Hohenstein, outfitted from head to toe in my new German army officer’s uniform. I arrived there on the morning of December 1st. The chief commander lived in an estate house near the town. I telephoned there, and a horse drawn carriage was sent to the train station to pick me up. The chief commander major Unglaube met me on arrival. I stayed there until the 3rd of December, whereupon I was sent to Konigsberg (today Kaliningrad) near Pronittenunder the command of “Meldikommando”. This chief also lived in a large estate house, named “Meyken bei Pronitten”. The chief was a German, lieutenant captain: in his household were car drivers, cook, housekeeper, stable hands and other farm hands – ex Russian POW camp detainees; mostly Russians. Our translator was a German Estonian with whom I could with great pleasure chat in my mother tongue! Part of our unit was comprised of ex Russian officers, who had also been conscripted into serving in the German army. They also wore German uniforms according to their previous rank, and were given responsibilities in the nearby POW camps. I was given responsibility over this group and reported directly to the commander. My fluency in the Russian language meant that I was given to directing the men, and the commander more or less occupied himself with purchasing responsibilities and in overseeing our activity. Since the number of POW’s at this time had been reduced considerably, we did not have a huge workload. There was lots of free time, and it was again spent playing cards, strolling in the nearby woods and in organizing parties. There was plenty of booze at our disposal!

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Mom’s been in the nursing home now for 4 days.  I spent several hours with her yesterday, went for a walk in the park, did tai chi sitting down in chairs, since the vast majority of residents are in wheel chairs.  Yet the instructor or master was able to get everybody (except for those who were fast asleep!) to engage.  Arms up, breathe in, arms down, breathe out.  Clench the fists, unclench.  Breathe.  Legs up, legs down and so on.  Very simple movements, but all designed to improve the hand/eye co-ordination, to get their minds to focus and relax.  And walking back to Mom’s room, there was a noticeable spring in her step.  She looked and felt revitalized.   Our pace was not the time dragging, foot shuffling, toddler steps of the hour prior.  But she lifted her feet, she was making a very conscious effort to walk and not shuffle.   It felt good.  So to the lady who posted the comment about the inadequacy of group homes, I must disagree.  I do appreciate your comments, keep them coming, but perhaps we are just fortunate in that Mom is in a setting where the staff do show respect for residents, where there is deliberate and intelligent thought to what should occupy their day.  Sure there are set meal times and all residents have their assigned tables.  That’s a good thing!  Otherwise it would be chaos trying to feed 50 seniors, all in various stages of incapacity.  And not once did I see a display of impatience or anger on the part of staff.  One lady was very disabled, wheelchair bound, food dribbling down her chin, had to be wiped regularly, spoon fed, yet when the tables were cleared, the staff made a point of asking her if they could take away her fork and knife and clear her dishes.  It would have been so easy and gone without notice had they just removed the cutlery, yet they accorded her the courtesy and respect as would any waiter in a fine dining establishment. 

Mom’s got some stuff on the walls of her room now that might help her get over the resistance.  A “seina vaip” (textile art) from home, lots of pictures, a wall plaque from her days as director of a children’s summer camp, stuff that will hopefully help her to see that this is a new home, but not a prison.  Don’t get me wrong, it’s still going to be a long journey to get to a comfort zone.  But the tears were absent when I said goodbye this time, she did still want to leave with me, but after we hugged and kissed at the front door, she accepted the staff person’s elbow to go back to the dining hall to finish her meal.  Frankly, my worry now is more about how Dad can handle this transition.  Is he up to it?  Good night Mom.

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More thoughts on aging

The brain is an elastic instrument, capable of remarkable regeneration if only we give it the opportunity.  There has been an explosion in brain research confirming that even very old brains can find new pathways between synapses that were previously thought to be atrophied.  So I’m going to ensure that my Mom’s caregivers understand this and work with her to ensure she finds more awake time, more minutes in every day to expand those connections.  The whole language of retirement living, long term care, nursing home issues must be changed.  Instead of viewing it like a prison sentence, it should be presented as opportunity.  Too many times I’ve heard comments like; “Oh, it happens to everyone.  I put my mom in a home and it was for the best. ”  But why should there even be any tears at the onset?  It is an opportunity.  Give it some time, see if the mental acuity improves.  The objective of caring for the elderly, for all people in fact, should be the maintenance of and the encouragement of happiness.  If the resident is not happy, then what will make them happy?  If it is something that can be regularly maintained, be it home care physio with RN involvement, then everybody’s happiness should be enhanced.  You’re in a nursing home to experience some different ideas, things to do.  Tai chi to involve your muscles and brain.  Field trips to enhance your spatial and worldly view.  Social games to build human relations.  Let’s work on building and rebuilding the synapses.  And if they have entirely atrophied, which is possible, then let the brain find new directions for those electrons to carry messages.  Our target must be to encourage life, not to avoid death.  Prolong life as long as it is free of pain and tears.  Be Happy!

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I just talked to Mom.  Asked her if I had awakened her.  She said no.  She sounded OK, tired but OK.  I reassured her that we would never force her to stay somewhere if she was not happy.  But to give it a try for three weeks, see if the rehab and tai chi and better diet help her to not sleep as much.  We want her to be around, I miss chatting with her.  And even if it’s only for a few minutes now, Dad and we and everybody would be so happy since that could be at Dad’s too!  Dad has no issue with getting more ineractive assistance at home, as long as you can be happy.  But if sleeping is what you need and crave to be happy, then let’s do that at home, with Dad.  But try three weeks.  And if for some awful circumstance Dad were to pass on in the near future, then you can stay with me.  But of paramount concern to everybody is your happiness.  So let’s try three and see.  I think I shall sleep better tonight.  Good night Mom.

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I helped my dad yesterday to place mom in a nursing home. If you’ve gone through this you know what a gut wrenching decision it is. After 62 years of marriage, dad basically signed over responsibility for his wife to a group of strangers. Albeit a very talented, sympathetic and qualified group, but still strangers. And mom still has enough wits about her to recognize what we are doing. That’s the hardest part. She would never willingly agree to such a move, who would? Sitting with her and trying to explain what we were doing was too surreal. I grasped for justifications that would make sense to her. But nothing you say can make it seem anything other than abandonment. Sitting with your crying mother in a long term care facility room that would become her new home, looking at the institutional pale yellow walls devoid of decorations and photos that she might associate with warmth, I was so glad I had grabbed several framed family photos. We arranged these around her bed, hopeful that somehow her limited vision would still give her opportunity to handle these mementos of her life. It’s going to be a very difficult few weeks. But the pain I feel cannot come close to what my dad is enduring. He’s the one in the empty house, sleeping in a bed by himself for probably the first time in his married life. Dad has to leave mom at the nursing home when he leaves following visits. Watching the tears streaming down her face, her hands reaching out to him. “Why are you going, don’t leave me here.”

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What’s a spirtle you ask?  I’m not even sure I got the spelling right.  Watching a food show, the hosts were running thru a host (sorry) of gadgets.  All manner of gizmos for the modern kitchen.  Slow cooker’s (digital no less) with built in thermometers.  Sexy red mixers.  Kitchen aids galore.  And then our gracious host picks up what looks like a wooden dowel that’s been sanded round on both ends.  This, ladies and gentlemen, is the 15th century spirtle!  Use it to stir your pot of porridge so those gummy lumps don’t set and ruin your breakfast.  It’s more “ergonomic”  than a spoon.  This food expert could tout the benefits of this wooden dowel, while on the counter right next to the pot of porridge, lay a wooden spoon.  Now I’m no expert in culinary matters, but it did strike me as somewhat odd that we should be putting out our hard earned money for a round stick!  Did it not occur to this announcer, that simply inverting the good old wooden spoon would accomplish the same task?  Was it simply another obscene example of the consumerism that drives us to stress levels beyond good health, or was it just a case of not seeing the forest for the trees?  In any event, now you know what a spirtle is.

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