On Friday May 21st my Mom passed away.  She closed her eyes and can now remember all that is dear to her.  She is finally at peace.

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Mom had a patch of dry skin on her shin about 1-1/2 months ago that must have been itchy, she scratched and somehow this blew up into a chronic wound and cellulitis that 3 rounds of antibiotics and topical antibiotic would clear up for a bit, then would come back.  It was decided on Monday that she would go into the hospital for IV antibiotics and for the infectious disease service to give their opinion on.

My brother and I traded off times of day and spent as much time as we could at the hospital, but we are both working full time, so there were times she was in her room watching TV.  They did provide a sitter who was watching the man next door to her and my mother, helping to take them to the bathroom with the IV pole, getting water, etc.

The hospital was a beautiful facility, but I've been so used to the home's staff just knowing how to deal with dementia it was kind of a rude awakening that the sitters and some of the nurses didn't seem to be too familiar with dementia.  On a certain level, mom does look fairly normal and I think they were misjudging her capabilities.  I'm not sure why, because she was agitated during a lot of the week and was in bed saying "mumma, mumma" so that definitely should indicate SOMETHING is up with her, but anyway....

By midweek I was really trying to be there for all meals - they do give you the ability to order what you want, but I was only able to do that once (timing issue).  The rest of the time they sent her whatever the basic meal was - ever try to eat spaghetti while propped up in bed?  I had to feed her that one.  The other meals I could get her out of bed and into a chair to eat properly.

Because she was so confused at times, it was really difficult to get her to use the toilet in the hospital.  When I would take her, I got her in the bathroom with no problem, but when I would try to help her sit down, I could only get her 3/4 of the way there and she would pop up again and say NO.  After 20 minutes or so, I could get her to sit down and she would go, but all of this fuss made her avoid saying she had to go to the bathroom and by the end of the week she was pretty much incontinent - lots of gown and sheet changing.

The cellulitis was a staph or strep bacteria, they used Unasyn and vancomycin all week and her leg looked so much better by discharge time.  Since lots of Canadian readers visit, I'll explain that Medicare and Medicaid in the U.S. have certain criteria that must be met during a hospital stay.  For some reason, they required that a demented person NOT NEED A SITTER for 24 hours and then would be allowed to be discharged.  ??????  does this make any sense?  For 12 hours, they used the sitter unofficially to keep an eye on mom and for the last 12 hours they had her in a semi-private room with a webcam on the TV facing her to monitor her. 
Another item I was kind of bothered with was the fact that my mother is on Medicaid (she is indigent) and the home made a big deal of having to do readmission paperwork and telling my brother they would let her keep her bed instead of moving her.  I have read the Medicaid rules for Michigan and they specifically state that if she goes to the hospital for 10 days or less, Medicaid will pay for her bed to be held - she was only gone 5 days.  I'm going to speak with someone about this, maybe I'm missing something here.

On discharge day, the infectious disease doc came to take one last look at the leg and filled out the paperwork for her to go back to the home.  I took her back and when we came in the front door, the lady who cleans her room hugged her and told her how glad she was to have her back.  She then went straight off to lunch, where everyone welcomed her back.  She was so happy to be back there in her familiar place!  That made me really happy, because I know she feels comfortable there and the staff know her so well.

My brother went to see her today and after she had visited him for a while she said she wanted to go into the living room and went.  I'll be going tomorrow.  I'm so glad this episode is over and I hope we don't have to repeat it!

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I had a post last week and when I went to publish it, it disappeared, so let's do it again.... I wanted to put up some pictures of the nursing home my mom lives in. We really feel lucky to have found such a great place - it is an old mansion on an estate that has been renovated to an 85-bed nursing home. Here is a picture of the home from the end of the driveway.

Here is the front porch, great for summer rocking!

 

Mom's room - cozy

I'd like to thank CHRIS and ANDREW AT PURE COBALT so I can put up pictures now!

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Those were brave words back then in early December. I was overly optimistic in booking the Maui trip. In the after-Christmas let-down period, it became obvious that there was no way that I could -- or should -- make this last big trip with Joan. She was becoming harder to manage with occasional outbursts of shouting and abuse of her Home Care caregivers. It became impossible to take her with me to my curling games. She would sit quietly and watch for about an hour. Then she would begin getting very agitated and shouting and I'd have to quit the game. And the manager of ElderCare asked me to withdraw Joan from her twice-weekly five-hour stays with them because of her incontinence problems. It meant I would now be caring for Joan full-time, all the time, 24/7. That prospect was depressing and it really started getting to me. By late January, I was seriously depressed and desperate for a way out. I was only sleeping a few hours a night and when I woke up, I would find my hair, my night shirt and the bed sheets soaked with perspiration. When I got up for breakfast, I was seriously dehydrated. Fortunately, Joan's doctor had made an appointment with the geriatric assessment center attached to the Misericordia Hospital. The appointment was for Feb. 1 and I began pinning huge hopes on it, hoping that they would find me a way out. When my daughter, Sarah, learned about the state I was in, she immediately booked a flight from Vancouver, postponing by a few days, a fun trip with her husband to Los Angeles. It was a huge relief having her ease some of the pressure on me. My brother, Garnet, was also a huge help. The four of us -- Joan, myself, Sarah and Garnet -- sat around a table with a geriatric physician and her assistant. I laid it out as strongly as I could that I had reached my rope's end. Garnet and Sarah backed me up on that. The doctor had been expecting to see a patient who MIGHT have dementia. But after gently probing Joan with a series of memory-related questions, she soon realized that Joan was a late-stage Alzheimer's victim. She also realized that unless someone else began caring for Joan BOTH of us might soon have to be hospitalized. She proposed a way out that involved us going straight across to the hospital's emergency centre. There would be a long wait but eventually Joan would be admitted to the hospital. Did we want that, she asked. Yes, I said, emphatically. It's now been nearly three months since Joan was admitted to the hospital. The first month was a big struggle for me. My doctor increased my medication for depression and I began seeing a mental health counsellor. She worked with my family doctor on my mental state and my sleeping problems. I hesitatingly said "yes" when the counsellor asked if I had any thoughts about suicide. I seemed very unlikely that I would ever again feel good about myself or develop any love of living again. Maybe I'm being overly optimistic but I HAVE climbed out of that deep, dark hole I was in. My medication has been reduced, I'm pretty well back to normal sleep patterns and I have resumed a wide range of activities that I had set aside whilde acting as a 24/7 caregiver. There have been other incredibly powerful and energy-giving changes in my lifestyle that I won't get into here. Just accept that I am again happy with myself and excited about what is to come in the last third of my life. Joan had caregivers with her round-the-clock for the first two months. Most of that time, she has been on a ward for long-term care of a wide variety of mostly geriatric problems. It's far from ideal for an Alzheimer's victim because few of the nursing aides have any real understanding of AZ patients' needs. I visit her every day for about 1.5 to two hours, do her laundry and arrange for her special needs such as having sessions with a hair dresser and a pedicurist. As I write this and think back to Feb. 1, I know Joan's condition has advanced quite a bit. I'm not always sure she knows who I am. I'm sure she doesn't recognize Paula, her best friend, when she visits every Friday, usually with another member of the 'birthday girls'. Her round-the-clock care by personal attendants was stopped about a month ago because she can't be assigned to an AZ care centre with that high level of care. I think, consequently, she has had at least two falls. She had an X-ray done that revealed a possible hair-line fracture of her hip. Until that fall, she would never sit for long, always getting up and slowly ambling along the ward hallways. They found they had to put her in a restraint chair so she would sit still long enough for her meals. Now she's in a chair of some kind all the time and isn't straining to get up and go somewhere. There has been no indication from the ward social worker or from the charge nurses that they have a place in mind for Joan. I have provided the requested three best places for her, in my opinion. But I've been told that when she is finally moved, it will almost certainly be to a different facility which may be much further away. And I've been told to expect to have to begin paying for Joan's room and board -- a charge of about $48 a day. After a lot of poking around with bureaucrats and an accountant, I have figured out a way to pay for it without quickly burning through all our savings...

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We wanted to keep Easter simple for my husband and not make mistakes like we did at Christmas in terms of him appreciating what it was all about. This time the idea was we had no expectations as to if he would have a glimmer of what Easter was all about. He had no idea what an Easter egg was. Which was just fine. I was happy the residence didn't over do Easter as they tend to really decorate the place for events like Thanksgiving, Halloween, Christmas, Valentine's and where I live, which is near Vancouver BC - the 2010 Winter Olympics. But I have to tell you one Olympics story. I was a torch bearer! And it was very neat that I could bring the torch into the res and many people got to hold it and have their pictures taken. SO many residents and staff did that there is no longer any soot left on the white shiny torch! And the residence brought six of them down in a bus to see me on my route. Yeah those rehab staff. On Good Friday where I live - we had this huge scary wind storm so I didn't take him outside that day. Instead I made tea in his room and we shared some fruit & cookies. I asked him what he might like me to bring him from home for Easter. He said, " a 70." Wasn't too sure what he meant. I pointed at a picture of him on his wall. He told me that was "the bread man." On Easter morning I took in a few chocolates and a hydrangea plant. Myself, my son Michael and his wife, Michelle, we sat outside on a porch in the sun (so nice!) We chatted softly. My husband loved his pieces of orange chocolate and a double starbucks latte. We didn't stay too too long as long visits tire him. We chatted with one of his best care-ades, Shauna who came out to join us and we told stories. I was kinda glad Easter came and went. Last Easter, when he and I visited my sister and her family on Vancouver Island for the special weekend he found everything so confusing and strange it was a "nightmare" and I had to bail out of their Easter plans and bring him back home on Easter morning. At least this year he was "safe" and there was zip pressure from me to expect him to understand what Easter was. Every day this week we've nibbled a little bit of his chocolate rabbit. Just a taste - as we now move nice & slow into April. I'm now doing our income tax! that will be another blog. Not now but in a few days or so.

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Hi all, I've decided I need to become more active on this site and I'm going to join the group and blog away! My mother was diagnosed officially in 2007, but really had been having progressive problems for the entire year before that and since 2002 had been losing things like her wallet, credit cards, forgetting to pay bills and making really poor financial decisions. I took care of her at home for 2-1/2 years with a little help from my brother, who took care of the financials and would take her overnight at times. In August 2009, she had to be placed in a nursing home, mostly due to the fact that her sleep cycle was just so disrupted she wouldn't sleep more than a few hours at a time. I would be up and down all night with her and also was working full-time (from home) on the afternoon shift, can we just say I was CRABBY? We were so lucky to find the nursing home we did. A friend of my sister-in-law recommended it to us, since her mother had lived there prior to her death. My sister-in-law and this lady went to tour the facility and many of the staff recognized the lady from 6 years before. Very, very low turnover of staff. The building itself is actually a mansion that was converted to a care facility. I'll post some pics at the end here. We put ourselves on the waiting list and 3 months later a Medicaid bed (oops! Forgot to mention we are in the U.S.) opened. My brother had to handle taking her the day she moved there - I just couldn't do it without totally falling apart. He explained to her that she would be staying there, helped put her things away, and then the staff took over. I visited the very next morning and when we both saw each other, both of us burst into tears. I think all we did was cry that day, but I was trying to talk about how beautiful the place was and all of the other positives, but it was hard. She stayed in her room a lot the first week and the staff gave her that time to grieve. The second week, they started to involve her in the routine of the nursing home and all the activities. Eventually she adjusted and we are almost 8 months into this. She seems settled, greatly enjoys the activities, loves the food, and I visit 4 times a week.

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Creating a special space with objects from home plus other items to give life to an institutional room that is so empty at first can be done. In my case it was done in stages as I slowly got used to the idea my husband's room - 2 East F 242 was now his home. One of the first things my son and I did was move in two bookcases to hold some of the books (out of many!) that would create an environment he was used to. We brought in books about critical thinking, art education, film history, philosophy, and books about some of his favourite artists. He can't read anymore but at least we created a sort of "set dec" of what he used to love to surround himself with. I hung on one wall a cork tack board to post postcards and pictures of our garden back home. The other half of the board is a white board where I write messages for him. Family news bytes. He doesn't read then but they turn into prompts for his care givers for conversation topics. Slowly, over a period of a few months I started to add large photo enlargements on two walls and bathroom door etc. Images of his past and present too. Pictures of us together and pictures of our three grown up children. Plus scenes of what his home used to be beside the Fraser River out on our porch and views into the small garden. Costco has the best photo dept. 12 x 18 enlargements for like $2.99. Near his big windows that look out towards a park next door (and into a parking lot) I hung vibrant mobiles of coloured ribbons and a fish. And a tin silver Mexican dove. They move in the breeze when i open his window. On the window ledge, which is really big sits a family photo album, sketch book, rummage basket, plastic green ferns, and two vases which these days holds blossom sprigs and tulips from our garden. On his bedside table there is always a Japanese red bowl filled with fruit. Apples, mandarin oranges and sometimes grapes. Over on the book case we have a CD Player and a pile of CDs so the care aides can turn on music at night. Beethoven. Mozart, Bach, Meditation kind of music as well. One thing he can respond to is MUSIC. He is too far gone to have a telephone or television in the room. I'm grateful music settles him down. On the bookcase also sits a stash of We also hung large blow ups of a book cover - a book he wrote, one of his paintings, and a family portrait. None of what is now in his room happened over night. It took me time to slowly introduce these elements. I think in a way what we have brought into his room has always been about - let's keep his room filled with life. A real spruce tree at Christmas! (that almost croaked cos of the heat, My 2 grandchildren visiting from Haida Gwaii loved to spray it daily.) Because my husband is so confined to a wheelchair and with limited mobility I have never been concerned about what he might start to play with. One very nice comment my son told me around Christmas time was the room and mostly my efforts to make it meaningful and alive- has made his visits with his Dad way more bearable. Sorry this has turned into a long blog. My message is have fun, Break the rules. Experiment. ( I have taken things home that didn't "work") Turn a space in a home into something as personal as you can to honour the life of someone you miss. As well as make a space where you feel comfortable and happy too. into his room is

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Looking back to a few years ago there were hints and clues at that time I wasn't aware of. I knew something wasn't quite right. The first clues were things like we had moved into a new house in 2006 and the move was very hard on my husband. Way harder than I ever imagined. There were signals he was not happy adjusting. All of the gadgets like how to operate a new oven puzzled him. And he had a challenging time figuring out how to use a different phone as well as a new digital television. Instructions for basic things to operate around the house suddenly turned into minor "nightmares." i caught myself mumbling and wondering what the heck was going on. Why did i have to repeat simple instructions and within minutes he would ask me again how things worked. That was when I told him I was worried and asked his permission if it was okay I went with him to our family doctor so I could say in front of him "things weren't quite right." Most of you I am sure were with someone you were worried about when some initial testing was done. And more testing with a specialist in dementia. And then hearing those words - "you have Alzheimer's." We were both stunned. My husband called the doctor a scoundrel. It took almost a year for us to get help. Maybe longer coz there was a lot of denial going on. But eventually he accepted things were not the same and we, the both of us, had to deal with what was going on. It wasn't easy. Our lives really did change and as I look back every day was a special day to savour. Since then I sure wish I had read the wonderful book GENTLECARE way sooner. This book was written by a woman here in B.C. - Moyra Jones. If you don't know about her work it is an awesome read and so very helpful. The book can be ordered online if you google it .

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My husband was a university teacher all his life and an author too. Reading and writing was a huge part of his life. It was very sad when he no longer had any interest to read, nor write anymore. When he was moved into a home at first he thought he was in a school and the little bit he shared with me was often sentences about how he was working on notes or had to go to a meeting. things like that. I am keeping a journal. Some of his one liners to me and my children are amazing. Last summer I asked him what he might like me to bring him from home. He asked me to bring him a "paragraph." Another day he looked at me and my sister and told us "the table of contents is missing." A few months ago I asked him how he was doing. He said, "less than minus." On Sunday night - nights are such a different time to visit than day time - it's very quiet as many of the resident shave been ticked in. always a great time to talk to the night care aides and LPN. On Sunday night he told me he was living in a house on the web site. Wow. I didn't think he even knew anymore what a web site is.

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Always so nice when it is sunny and warm when I visited my husband this morning. He's been in an extended care facility since last July. What happened was he went into a steep decline last June and ended up not being able to walk plus a huge loss in his cognitive abilities. Before that he was living at home with alzheimer's - slowing done a lot but still doing okay. Every day is different. In terms of how things are going with him. Sometimes he might only say one word. He goes through periods when he can't get his hands to work to feed himself. He has no idea where he is which is a blessing. My visits with him tend to be either in his room where I make him tea and we eat fruit and cookies together. If it's not too rainy or too cold - best visits (for me) he getting him outside into this lovely park next door. The park these days is filled with flowering magnolia trees, daffodils, hyacinths and banks of coloured heather clumps. Our favourite route is down a path, up a hill behind a water fall, then stop to look out over a small lake, down, past the rabbits which our dog Hugo likes to chase, around more paths through old trees and eventually back to his residence. Sometimes he falls asleep. Rarely does he talk. For Christmas I bought him one of those special lined capes for folks in wheelchairs. No more awful bending his arms in a winter coat that was slit up the back - which was still hard to get him into. The cape has made getting him outside so much easier! and if the care aids dressed him in thin pants then I just put a rug over his legs. Lately I tend to go "wow it's almost spring time." So far I have seen him there in the summer, autumn, and winter. In a funny way the seasons measure time that has passed both slowly and fast. He is slowly disappearing. Can't say enough about how good most of the staff are. Great rehab staff and nurses and the care aids. I had never been in a nursing home before until last summer so you can imagine what a foreign, and scary place it was. Social workers made it very clear it was my home too. Luckily I am retired and live close by so it is easy for me to mix up visit times and drop in when ever I feel like it. And they allow our dog Hugo inside. Hugo has become afavourite visitor - especially to those people who had dogs in their lives. My husbandis in a care facility where the residents with dementia are mixed in with everyone else. I wasn't too sure about that - but I am happy he is with people and their families who can still talk and are active. Way more stimulating. I'm glad I have discovered this web site. I want to share my journey with my husband. I hope to make a few entries every week about themes such as what we did in his room. What are the "rewards" when he can hardly communicate. How I handle stress of being a caregiver. My therapist's help. My worries. And the journal I do. I live in Richmond BC. and I am 66 years old.

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