by Bob Hoffmann
by Bob Hoffmann
Epilogue - April 8, 2000
1998 Entries - March 15 | May 16 | June 26 | July - the final month | August 1st, 10:15 PM
1996 - Journal Entries | 1997 - Journal Entries
As I had predicted, I am falling behind on this journal as my work load increases. My sleep has been in spurts recently as I am getting up two or three times with Shirley at night now. This normally means a nap mid afternoon, sitting on the couch with her, to catch up. Her physical strength continues to decline, and I can no longer walk her even a couple steps. She bends at the waist, requiring me to hold most of her weight when I try to stand her up, or transfer her to and from the wheel chair. While standing, she has begun to buckle her legs which adds to the weight to be held. This and other changes have required that I obtain some additional help which I have done through the hospice program.
In January, after noticing some additional weight loss to about 110 pounds (20 pounds below her peak a year and a half ago), and seeing more resistance to eating even the pureed foods, I called and discussed her condition with her doctor. We discussed various possibilities and how hospice might be able to help. The doctor volunteered to contact one of the local groups for a pre-admission assessment. That was held a few days later, and the conclusion was that Shirley qualified based on the entrance criteria for dementia victims. They reviewed the results with Shirley's doctor who then agreed to sign the order.
We have been living in the upstairs master bedroom for several months now and it has been working well. The additional furniture that I moved there has made it comfortable for the volunteers and family that come to visit. During the day, I move Shirley between the Love Seat and the recliner to give her a variety of sitting positions. Also, I frequently take her with me in the wheel chair to my computer room where I let her sit beside me for periods up to an hour while I work. She seems to enjoy that and normally sleeps quietly most of the time. The doors on my bathroom, bedroom, and office are becoming scuffed up from moving the wheel chair through. I have considered removing the doors temporarily, but have put that off, just trying to be more careful for now.
Hospice has provided solutions to several problems that I was having. Most immediate, they provided me with a back support belt as the lifting was beginning to take its toll. Within a week I could tell the difference, and the back strain I was feeling went away. I also began practicing better lifting posture, with less twisting which was a problem I was having before. They also provided a different chair for the shower. This was a plastic tube "potty" chair on wheels that lock. After several tries I managed to get it through the shower door and positioned up against the "lip" that we must always step over going into the shower. Now I can transfer her directly to the chair, without having to walk or maneuver her over the lip as before. That maneuvering was becoming near impossible and had about brought her shower days to an end, as I could no longer lift her across the lip and she could no longer help. Once on the chair, it is easy to move her around in the shower so it has bought us some additional time without having to resort to bed bathes every day.
Hospice also brought out a 3 motor hospital bed and set it up for us with an air mattress pad. I place Shirley in this bed during the morning hours so I can raise her head up into a more comfortable resting position. During the night, I place her in the adjoining queen bed with me so she can still experience the closeness that she is used to. She has begun having more frequent problems with congestion at night and frequently will wake me up while choking, requiring me to sit her up for a few minutes so she can clear her throat. This may mean that I will have to start placing her in the hospital bed at night so I can keep her upper body slightly elevated which I think will help alleviate the problem. Once I begin doing this, I will push the beds together and raise the hospital bed to the same level as the queen so that we can still sleep close at night. In this way I can still hear her stirring easily.
The hospital bed has side bars just on the upper end. While Shirley was in the bed one morning, she managed to turn herself and slide out of the bed down to her knees hanging from the side bar with her upper body. I think the shifting of the air in the mattress may have contributed to this, as she buckled her legs allowing her lower body to go over the edge. The heavy covers which were tight around her were all that protected her from falling completely out. Since then I have read warnings provided by hospice about patients being stuck between the bars and the bed and being injured. I plan to ask for additional side bars to be installed on the lower part of the bed and use a long body pillow to fill the gap and block her from moving against the rails on the side that is away from the queen bed. Of course the rails will be lowered on the side shoved next to the queen bed and the wheels will be locked.
Hospice being involved has given me someone with which to share care responsibilities and problem solve. One of the primary advantages for me, is the 24 hour emergency backup coverage. If I am ill or would have to go to the hospital, hospice will take care of her, either at home or by moving her to the hospice house. They will also provide me respite for up to 5 days at a time the same way, which I am considering trying on a weekend in April or May. Currently one of the hospice skilled care nurses (LPN) comes on Saturday for two hours and gives Shirley a sponge bath and dresses her for me. She also does an overall assessment and makes sure that I have supplies that I need. This is the first step for me in relinquishing some of these duties. I am finding that getting out of even one routine a week helps rejuvenate me. A hospice volunteer has started coming on Monday morning for two hours allowing me one more opportunity to get out to exercise. I now have coverage for most week days and hope to get back into my walking regimen as soon as the weather permits.
Shirley's doctor came to our house over the noon hour one day and examined her. I was concerned about her left shoulder and arm that now hang freely. The muscle tone is gone now and there is nothing to hold it tight in the socket. When the arm is moved the shoulder makes a grinding noise so must be positioned and handled very carefully. This is a normal progression of the disease but we suspect that it has affected her left side more quickly due to an old injury causing her shoulder to be dislocated. She does not seem distressed, so I decided not to start any pain medication as I do not want to suppress the small bit of personality and awareness that she still displays. We also discussed the difficulty she has in swallowing as she is resisting eating as much as she had been a month or so ago. When she decides she has enough sometimes, she will show her teeth tightly locked together. It is hard for me to not bust out laughing when she does that. The doctor prescribed TEDS stockings to help with the circulation in Shirley's legs as the left leg has been slightly swollen with poor color after sitting for a short period of time. Her legs frequently stiffen sticking straight out and are difficult to bend, adding to the difficulty of transferring her at times. To prevent them from twisting when I stand her up for transfer, I spread her feet apart and place my foot between. The doctor left telling us that she will be glad to come out anytime that we think we need her. Although she is designated by hospice as Shirley's primary physician, hospice also has its own physician on call 24 hours a day for situations that require it.
I finally did purchase a plastic transport sled of the type used by winter campers, for emergency purposes to move Shirley downstairs quickly. The sled would allow me to slowly slide her down the carpet on the stairs if there were a fire or a tornado. With 24 hour backup coverage from hospice, I could also get some help from them within a short period of time.
The array of volunteers that come weekly continues to be the mainstay of my ability to care for Shirley at home. Shirley still seems to show an awareness of her environment, and to enjoy having the volunteers come sit with her. One brings spices and perfumes and passes them under her nose while rubbing her back. Others read to her or rub her feet. She enjoys just hearing others in the room talking it seems. A barber from the salon at Penney's stops by on her way home when I call and gives her a haircut. All this contributes to a quality of life for Shirley that is about as good as can be provided at this stage.
Shirley has continued to weaken during this period. She is very difficult to lift or transfer now, offering no help at all in the move requiring the lifting and and transferring of the full weight. Her fragile body makes this more difficult as extreme care must be taken in the move. She no longer smiles or shows recognition and frequently shows signs of distress. We have had to discontinue the showers as I am no longer able to lift her far enough for the transfer to the shower chair. Adjustments had to be made once again in the care plan.
After she had slid out of the hospital bed last period, I requested that full side rails be installed and these seem to be working well. There are reports of accidents as some patients have become trapped between the rails, but I found that packing a pillow between the side rail and the bed prevents any chance of that happening. I am still moving her to the large bed so she can sleep with me at night, and using the hospital bed in the mornings after breakfast. Her head is elevated and the bed is raised, making it easier for the volunteers that like to work with her when they come. Also she is given a bed bath every day and the higher elevation makes this work much easier.
The hospice nurse comes 5 times a week now to bathe her, dress her, and feed her lunch. This has taken an enormous load from me and I can feel the difference... volunteers come in the morning on some of those days, so I can get out and do some walking or shopping, and come home and she is all taken care of and sitting sleeping in a chair. The nurse brought an inflatable basin that fits under Shirley's head so she can wash her hair. This seems to work very well and she feels better after having her hair washed. We use baby shampoo to avoid burning her eyes now. The nurse and I have taken her to the bathtub and using a transfer bench managed to seat her in the tub and give her a good sudsy shower with the two of us working together. We were all three wet at the end and it is doubtful that Shirley benefits substantially over the bed bath. I know the moving is somewhat traumatic for her at this point. The nurse does a very good job of washing and rubbing her with lotion as part of the normal bathing procedure. The two days she does not come, I make a poor substitute, but do my best and try not to soak her, me and the bed.
Because she seems to be in distress more often, as a result of her left arm atrophy, I have begun giving her Advil every day. Two in the morning and two in the evening. This seems to help, and we have noticed that since taking the Advil she seems to be more aware. Since Advil contains IBUPROFEN which is known to stimulate the brain, this could be the reason. But even with the medication, she still shows signs of distress and we may need to keep her in bed more and look for other medications. Hospice has provided some prescription Tylenol suppositories that I keep on hand in the refrigerator, but they are most beneficial in treating temperatures. So far the Advil has handled the temperature spikes she occasionally takes to 101 in the mornings.
Shirley still eats and takes liquids that have been thickened, but eats significantly less than she did 3 or 4 months ago when we started hospice. We have reduced the quantities but try to make sure (persist) that she finishes the juices. Her ability to swallow does not seem to have gotten worse, but she is losing her desire to eat and the effort that it takes for her seems great. She will frequently just try to snooze off with her head hanging down and will not allow me to lift it for another bite. Then she will give up and take a big deep breath and take one more bite. She sleeps most of the time now, and especially after being bathed or having a meal which seems to take all of her energy.
I have been concerned about brushing her teeth. Now that I can no longer stand her up against the sink to brush them, I have gone to using toothettes (at the hospice nurse suggestion). toothettes are a bit of sponge on a stick. Previously I had found that using toothpaste to brush her teeth just prior to going to bed, increased the risk of saliva buildup in the mouth and her choking while she was in a bed. So with the toothettes I began using mouthwash diluted with water, and will scrub her teeth with the toothette and swab out her mouth. Most of the time she will not let me get behind her teeth doing this. Then I will take her soft bristle tooth brush and dip it in the mouthwash and brush her teeth gently. This seems to be keeping her gums healthy, but her teeth have turned to a light gray color. I also use the toothettes to swab out her mouth or front gums when she wakes at night to keep her mouth from drying out. Using the toothettes and mouthwash frequently has also helped her breath. I buy the large bottles of Lavoris with the red cinnamon flavor. Using just the toothettes to clean and massage the gums will help to prevent the gums from breaking down and creating other problems. One more thing I learned from hospice.
There continues to be an increase in general stiffness. We try to exercise Shirley's limbs at least once a day. Her legs are kept tight together when she sleeps so I now place a pillow between her knees to prevent pressure spots from turning into bed sores. She seldom moves when she sleeps, so some periodic position change is important. When I first get her up in the morning, her legs stiffen straight out and feet cross and shake. The stiffening is a frequent reaction anytime that you touch her leg or attempt to lift her, making each move more difficult. Her left arm and shoulder appear "welded" to her body when she first gets up. I slowly free the shoulder so that I can move her arm away from the body. When I sit her in a chair, I always prop it away from her body. As she continues to become more rigid, which is the progression of this disease, caring for her will become more difficult.
We are now in the fourth month of hospice. There has been a continued noticeable decline. Without their help it would have been difficult to continue at home. Every home caregiver needs to be aware of hospice services and seek their support as early as possible when entering the late stages of this disease.
Shirley's Mom and Sister came for a weekend visit during this period. Her mother was disappointed that there was no longer any recognition or response to her presence. It had been almost a year since the last visit. Shirley continues to have an awareness that is difficult to explain sometimes. I sense that she still understands much that is said and responds in a small way to those that come frequently to care for her (volunteers, nurse). It is easy to speak as if she were not here.. I am guilty of that . But I am sure she still derives some sense of comfort and well being from hearing those around her.
There have been many changes the last six months.. Last November, we were still living in the entire house, and I was able to help her up and down the stairs... now she can no longer even help in the transfer from bed to the wheelchair, so I am lifting her total weight which is about 100 pounds now. I can no longer get her into the shower or put her on the toilet. She can no longer have a bowel movement without assistance.. She still eats some pureed foods that have had thickener added to them, but mainly likes the juices.. intake is about half of what it was 5 or 6 months back. Her left shoulder and arm have atrophied to the point where it hangs useless, with the shoulder muscle gone and bone on bone when it moves in the socket, making her very fragile to handle, move. Her head hangs to her chest, and she resists raising it which we need to do to feed her. At this stage she is very susceptible to aspiration resulting in pneumonia, compacted bowels, and other infections that would be life threatening. There is very little quality of life except for her to sit next to me (like now) so I can stroke her head or rub her knee while she sits quietly.. I still place her in bed with me at night so we can be close. This is the way it ends and I can only imagine what the next several months will bring.
I am moving her to the Hospice house over memorial day weekend.. this will be the first respite away from her since this started (diagnosis 3 years ago). She still has an awareness of things, and I feel understands much more than we might know.. I have been giving her Advil daily for the shoulder pain, and that seems to have heightened her awareness (also observed by the nurse). I have begun speaking to her more when we are sitting.. some volunteers have started reading to her.. we have shut off the TV and play music instead... Enya seems to relax her (or maybe it just does me)... I am concerned that she will be aware of the move to the hospice house and in particular may be afraid of the nights... she many times will not go to sleep until I come to bed.. The nurse that cares for her will meet us at the house and perform her routine.. one of the volunteers that has come for the last year or so, will go on Saturday and Sunday and feed her the evening meal... the house holds a maximum of 9 patients and is located in a house 5 miles from town in the middle of a woods where deer roam freely.. at present they have only 3 patients.. this is about as good as it gets so I am going to try it.... My two kids and I will drive to Illinois for the weekend and visit their cousins, aunts and uncles, and Shirley's mom.. I will eat a lot of food that does not come out of a can or plastic bag for a change.. May even see a movie... drink a beer.
Recently I have thought more about what I will do in the future. I cannot imagine a world without Shirley.. or what I would do in such a world. I plan to stay here close to the kids for some period... I am fixing up my house.. I think they will need me and vice versa.. it is amazing that even with Shirley in her current shape, the kids have adapted and drop by and give her a hug, tell me their troubles, and life goes on... Losing her even at this point will be tremendous loss for them... neither are married yet, so there will be many things they will need/want to share in the future... that she will not be here to share with them.. So I guess at least part of my job is to be here until they have become better established and more confident in their own lives.
June 25, 1998
It is beginning to sound like a broken record, but Shirley continues to weaken, lifting even her good arm and hand less often... not moving at night or stretching her legs. Her weight loss is becoming evident, even without being able to accurately weigh her. She is showing the weight loss visibly and also is easier to lift and move. I would estimate her weight to be about 85 pounds or less. Feeding grows more difficult as she is showing no interest and locks her teeth and lips tight much of the time. I believe these periods are becoming more traumatic for her, especially after a ten day period just completed where I was having to feed her 3 teaspoons of an antibiotic mixed with fruit, and having to be persistent to get her to complete the full amount. She has developed a reflex reaction to lock her teeth and lips anytime you just stroke her head as she thinks you are going to try to feed her something. This happened when Niki stopped by this last time and just placed her hand around her neck to give her a hug.
We have been focusing on getting liquids into her body as she returned from her stay at the hospice house slightly dehydrated, and seemed to have developed some form of a UTI that we have been trying to treat. We tried 10 days of amoxicillum which had always worked before, but when that did not work, went to another antibiotic that hit a broader spectrum of bacteria. The latter seemed to work but was very difficult to administer orally in the quantities required. I think with her reduced intake, she is going to be more susceptible to this sort of thing from now on. With the difficulty and trauma I feel she experienced from forcefully administering the quantities that were required this time, I am not sure that I will be willing to do that again.
In her weakened state, transferring her to and from the wheelchair has continued to become more difficult. I did not like to lift her from her upper body or with the transfer belts commonly used because she has become so fragile. I finally took an old pair of cutoff Levi's that I had, and slipped them over her sweat pants, and now we grip those to lift her to and from the wheelchair, without causing her so much distress. They are also useful to grip to just shift her around in the chair to get her positioned. This works so well, we cannot imagine why others have not thought to try it. This has been a big help to me as well as the nurse that comes to bathe her.
The break away over the Memorial day weekend was nice, but I found that I was quite tired the first two days, decompressing from caregiving duties, and it was not until the third day that I got up feeling refreshed and that was the day we drove back home. I left her in the hospice house another day, and just visited her during meals and at night. This gave me some time to do some running around and get the lawn mowed and house restocked before bringing her home. The handicapped van transport service worked very well. The driver had no problem in taking her up and down the stairs (to the second floor) in the wheelchair. Then they just pushed her up the ramp and into the front passenger area where they firmly strapped the chair in tightly, and placed a full chest safety harness around her. She did not seem disturbed by any of this and rode peacefully out to the house. She adjusted well to the house not showing any particular concern about being there. The nurses were all dedicated and did their best in attempting to feed her meals (in one case spending 2 and 1/2 hours trying). The feeding is a difficult task even when you do it every day. As I mentioned above, she did seem a bit dehydrated from the experience.
I do plan another trip away in early July and will leave Shirley at the hospice house over the weekend again. And there continues to be lots of support from volunteers, so I manage to get out and even a few tasks done around the house. Shirley seems content at best these days.
July - the final month (added 10/2/98)
This entry was added to fill in the period that turned out to be the final month. We (my children and I) flew to Seattle for a 4th of July family reunion. It was a once in a lifetime opportunity for the whole Hoffmann family to get together and there were many cousins that we had not seen for many years. I felt it was important, particularly at this time, for my children to make this connection. We would fly out on Friday, July 3rd, and return on Sunday, July 5th. It meant that Shirley would be moved back to the hospice house for that period of respite.
Although Shirley continued to weaken, I felt she would be alright for this period. I called and scheduled a local handicap transport service to move her to the house on Thursday afternoon. This time the hospice house would be full and so she had to be placed in one of the last available rooms on the lower level, further away from the nurses station. There were other critical patients on that floor, and the guideline calls for a check every 20 minutes, but it still bothered me to have her located so far away. At this point, she was not making audible sounds, and appeared to be sleeping most of the time. I met the duty nurses and the social worker and remained the rest of the afternoon, helping with the feeding. Several of the volunteers and the social worker indicated that they would look in on her while I was gone. As last time, I returned early in the morning to talk with the night shift and also meet the morning shift coming on. Shirley had not been changed yet that morning and it had obviously been some time. I changed her myself before I left for the airport.
With the flying and all day at the reunion, we returned on Sunday evening quite tired. I went directly to the hospice house from the airport. Her hallway was quieter, as the man in the next room that had been on some sort of machine had died over the weekend. She was deep in sleep when I came in and was difficult to wake. She was wet and needed changing, and her mouth was "gummed" up as it appeared they had not brushed her teeth since I left (at the hospice they tend to only use sponge swabs to keep the mouth moistened). I found her toothbrush and scrubbed her teeth dipping the brush in mouthwash, and then changed her. Amidst all this she woke up and seemed to be aware that I was back. It was an hour before anyone came. The litter box for the resident cat had also been stationed against the wall outside her door and needed changing.... I went home to unpack and get some sleep.
I came out early the next morning (Monday) considering taking her home a day early as I had planned to leave her until Tuesday Morning. After changing her again and then feeding her, I decided to leave her there for the additional day so I could get some supplies and other shopping done. I returned for her meals and in the evening. The next morning the handicap van came and we took her home. Like last time, I dressed and placed her in her wheel chair, then she was wheeled into the van and latched tightly in the front passenger area. Once home, the operator helped take her up the stairs while still in the wheel chair, something he was quite experienced at doing. A very efficient procedure... Overall, I was a bit disappointed with hospice this time. It was clear that a full house of 8 patients (all terminal and some critical) needed more than just the two nurses that were assigned. I was happy to have her back home.
As days passed, and we continued to force a couple of ounces of nourishment and liquid into her several times a day, she continued to weaken. She was not moving her hands as much, and her head seemed to stay as I placed it on the pillow. I made sure that I moved her periodically. The hospice home care nurse that had been coming 5 times a week for two hours to bathe and feed her, now began coming 7 times a week, and later a second nurse was introduced to pick up two of the days from her. About this time I noticed she had gone over a week without a bowel movement, and we asked for the charge nurse to visit. She arrived with a visiting resident (doctor) from Mayo. Her examination identified a blockage which seemed to indicate an impacted bowel.... She indicated that it was probably untreatable at this point except by surgery which was ruled out at this stage. I asked her what that meant in terms of prognosis.... she said that some people can last up to two weeks with the condition..... I was choked up and could hardly talk. I said that we should get her doctor's assessment and she agreed and said she would arrange it. After they left, I sat down in the living room and just sobbed... after all this time, even knowing that the disease is terminal, having a time frame or an end established with it seemed to knock out my defenses.
Shirley's doctor (the internist she has been seeing for many years) came the next day over the noon hour. Her examination found the blockage but it did not appear to be swollen or distended yet. She said that it did not seem to be a complete blockage... yet... so she was not yet showing a high degree of discomfort from it. Her upbeat and positive attitude gave me some comfort, but she did not offer a prognosis... I contacted the hospice charge nurse again, and after discussing the results with her asked for a visit by the hospice physician as I expected he had much more applicable experience having seen many terminal situations like this. The nurse agreed and arranged the visit.
The hospice physician arrived and examined her, then we left the room to go sit and discuss. He agreed with the other doctor's assessment that the blockage was there, but not distended yet. He commented that he was quite surprised in seeing her overall condition at this point in the disease to be so good (skin condition, lack of bedsores, etc.). He commented that it was far better than it would have been in a nursing home, and in fact she would not have survived this long. I took all this as a compliment for the personalized care she had gotten at home, but was waiting for the "but".... He said seeing her condition, he thought it could turn into a marathon, with her continuing to worsen, yet with this level of care surviving for some time yet. He indicated that what I would see in that time is the skin deteriorating as she becomes dehydrated and finally tearing in spots.... he said that bones would weaken and may break even while she is lying in bed..... eventually the bowel blockage would enlarge and distend creating pain and internal infections.... He said even if we quit forcing nourishment and liquids into her, she could last two weeks. He wrote down his office, home and private beeper numbers on a piece a paper and told me to call him at any time. It was a good discussion but when they left I was perplexed....
This led me to the decision I had to make... By morning I began interpreting what the doctor had been telling me quite differently... through the care I was giving her, and continuing to force nourishment and liquids into her mouth, I was prolonging the end, and the result of that would be problems and pain that she had not yet had to endure. So the very personalized care she was getting had kept her in good condition up to this time and prevented her from experiencing many of the things that are common in a nursing home... yet continuing such care at this point was now going to prolong her decline such that she would almost certainly experience conditions that would cause pain and other distress.... I discussed this with each of my children and we all agreed.... that it was time to let her go...
The next morning at her feeding, I offered her some of her prepared drink... But when she refused by locking her teeth tight, I backed off.... then I tried it again, and after the same result I quit.. (previously I would have forced some into her cheek cavity, and eventually it would drain into her mouth and she would swallow it)... I told her that I was not going to make her eat or drink anymore if she did not want it.... she seemed to understand. When the home care nurse came at Noon to bathe and feed her, I gave her the same instructions. This was Saturday, July 26th.
After several more meal attempts, we quit offering her nourishment as it was clear she did not want it. I used toothettes and other swabs to moisten her lips and the inner part of her cheeks and mouth. I also continued to use her tooth brush dipped in mouthwash to brush her teeth once a day. This went on for several days while she seemed to continue to show some level of awareness. Without liquids being taken, I was surprised to find that she still seemed to be having a substantial daily "void", which my son told me is a symptom of kidney failure that occurs during this period, purging liquids from the system and speeding the dehydration. By mid week she was becoming less responsive. We contacted her family (Mother, sister.... ) and they planned for their arrivals over the weekend. Both my children had taken leave from work and were now at home with me.
By Thursday evening, she was limp and unresponsive. Her eyes would not shut, but were staring blankly ahead half open. We tried to keep them lubricated with artificial tears but even with that it appeared that the thin membrane covering one eye had torn loose. Her breathing was very shallow and could only be detected by observing her chest rising and falling slightly. Her extremities were starting to pale, turning bluish as circulation decreased. She reminded me of a fallen robin I had once seen that was near death, so still, but with the life remaining still observable in the rising of its soft breast.
On Friday the home care nurse showed apparent concern while visiting, but was non-committal.. Shortly after she left, the charge nurse called and suggested a visit by her and the social worker.... I agreed. Niki was with me when they arrived, and after the nurse examined her... and a long silence... she said that Shirley only had hours left to live... "Her family was not arriving until the next day".. I said... "and her sister not until Monday".... guess I thought that by saying that, it might change her mind..... Niki was visibly moved, as was I... the nurse asked if I wanted anyone from hospice to stay with us... the social worker or another nurse to come sit with us... I said no, as I felt if there was nothing more that they could do for her, this was something just for the family. The hospice had sent us several good booklets describing in detail what to expect during the final days, hours, and minutes, and had also discussed it with us, so we felt prepared from that stand point... The nurse and social worker left.... Niki and I went to opposite ends of the house and sat and sobbed, as once more the finality of this was thrust upon us.... then we called Shirley's sister and gave her that news... she volunteered to call her mother and brothers...
Arrangements were changed. Shirley's Mother and two brothers that lived in the same town in Illinois planned to leave immediately and arrive just after midnight. Her sister who lived in North Carolina moved her flight up to Saturday afternoon.... her younger brother in the military found flights that got him from Atlanta, Georgia, into Rochester at 10:00 Saturday night...
As time went by, Shirley remained stable with her light breathing, and seemed to be hanging on... we talked to her, telling her that her family would be arriving soon and to hang on... hours went by, and her mother and two brothers arrived.... we set up a vigil during the night, so someone would always be awake with her in case of a change... morning came and no change..... then in the afternoon her sister arrived and talked to her... her breathing began to get louder and more strained by the evening.... it seemed to grow in intensity and had a rattling sound that was discerning to those in the room... Rob told me he couldn't stand to see her like this anymore and suggested that we administer morphine to slow her breathing down... It was time for her younger brother to arrive and I suggested we wait the few minutes until he got here... administering morphine in her condition could stop her breathing altogether.... I did not feel she was in any pain at this point... her two brothers left for the airport to pick up her younger brother... other family went downstairs to wait for his arrival.... Niki stayed with Shirley as I left the room for a moment...
Niki called for us to come back... I ran up the stairs... her eyes had opened wide and one pupil had gotten very large.... Rob said he thought that a vessel may have broke.... he turned around and said "this is it...". Rob, Niki, and I held her as she struggled with her final breaths... It was over by the time that her brothers got back from the airport.
August 1st, 1998 10:15 PM
Shirley passed away last night, August 1, 1998, at 10:15 PM. Rob, Nicole and I were with her when she left us. She was at home with us. Her family arrived during the day from various parts of the country and were with us. She seemed to be waiting for them. Her mother, 3 brothers, and sister.
Shirley went quietly, at home, as we had wished. She did not show signs of pain or significant discomfort and was not administered or appear to require any morphine although we were prepared to give it. She had been in the Hospice program six months to the day. It was 3 years and 5 months since her initial diagnosis of Alzheimer's Disease. It was 4 years since we noticed symptoms significant enough to begin testing for cause.
We have lots of support but of course feel quite empty right now.
People write and ask about my life since Caregiving. Yes it is tough to make the adjustment back to a reasonably normal life. It is important to find a goal to focus on to get through the first year. You need to force yourself to get out and realize that there is life away from the home. I started with short day trips, and then several overnight trips. I returned to work 4 months after Shirley's death and found that stimulating and necessary to get my brain functioning again. My memory was not good (standard post depression symptoms) and is still recovering almost two years later. I cleaned out the closets and reorganized the house to make it mine, adapted to my new single life style. My home office wall is still covered with pictures of our family and Shirley and our life together, but there are no "memorials" elsewhere in the house. It was time to move on... The late spring of of 1999, I left on a 6 week solo camping adventure designed to create a break with the past and force me to focus on a new life. I captured the adventure on a new (and friendlier) web site at:
The second year of recovery can in many ways be tougher than the first, but others have told me that by the end of the second year (approaching for me now) life stabilizes and moves forward again. During this second year I have taken frequent vacations away from work, and focused on increasing my social interaction. My children continue to visit me, but less frequently, and we seem to require less support from each other than we did through the first year.
The message here is that there is life after caregiving...... Don't be afraid to move forward and find it.
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