One of the hardest things for me to do, as a caregiver, is to consistently stay with a physical therapy program of exercises for Mother...and for myself. The very nature of Alzheimer's Disease demands flexibility and a willingness to allow constant interruption of plans from such patients' caregivers--Alzheimer's flies in the face of any organized effort to perform one task on an every-day basis. It gets so discouraging that I give up trying to add one more regimen into our caregiving schedule--it is hard to fight someone continually on all fronts.
OBSTACLES: When I have tried to exercise both of us in earlier months, there is always something that shuts it down--either Mother throws a negative tirade, whining considerably about it that day, to the point where it discourages me so much that I give up--or one of us gets sick--or some other priority totally makes me forget what we were supposed to be doing--or, I am so fatigued from my own medical conditions that I simply cannot push and overcome all of the blockades that come our way.
1. Since I personally hate exercise, I have to play my own motivation games to do the task for both Mother and myself. My aversion comes after being sick and in bed most of my life with my metabolism running in an opposite direction from what most people experience. My baby book is a horror compilation of diseases, illnesses and too many immunizations, all of which weaken a person considerably during their developmental years. I was totally bedridden with kidney disease, glomerulonephritis for seven months at age 10-- at a time when most kids are learning to become more active--then again for five months two years later when I contracted it a second time. Blood pours through your kidney walls when you are in a critical onset stage. The disease is fatal if you do not have total bedrest, avoid protein and take an antibiotic all that time. You have such overwhelming fatigue that when left alone daily as a ten-year old, you have no desire to move from the bed anywhere in the house. Just getting up to use the bathroom required effort. Every sore throat races into strep throat which races down to the kidneys in those of us with genetic history--both Mother and her dad had kidney disease also but a different type. Thus, my growing up years were filled with "You have to stay in bed or you will die." To my subconscious, exercise is the enemy. And in my adult years, sure enough, every time I tried to exercise, starting slowly, I got injured or sick. There has been NO positive reinforcement. So, trying to do my own exercises plus Mother's is a huge mountain to overcome.
2. I tried variety, using my Physical Therapy exercises and Mother's list from professional rehab instructors we both had in the past. I pulled out my videotape of "Sit and Be Fit" but that was difficult for me to work the living room VCR which is very different from the one in my bedroom (my command center as caregiver with nurse's station and all records--my only haven for respite each day, per doctor's orders so I do not collapse under the caregiving strain.) To do the videotape, I had to drag chairs into a larger area and Mother got confused trying to figure out which foot, which arm--keeping up with others shown on the screen--while looking at the video nurse doing it "opposite" how she viewed it. Doing it alongside her with all of that constant interpreting by me going on...was exhausting. Mother knew she did not "match" those on the video, so she got mad because she felt like a failure. She wore me out so badly that I had no energy to try it day after day. I should try harder, though--it is an excellent, gentle but effective workout for seniors who have medical problems. Great soft voice with much encouragement by the nurse. I just need a helper to cue and operate the video, pausing or rewinding it as needed, drag and position the chairs so we are not in each other's way, get the exercise band, help Mother figure out how to use it each time, help us do the exercises then put the chairs back and keep us both motivated to repeat this on scheduled days! My original idea was to do a different type of exercise daily, so Mother and I would not get bored.
3. Then, I tried walking her outside, just up and down our ramp and around our backyard -- well, it worked twice but at other times, Mom began complaining about her knee or she hated being outside with no purpose, turning what should have been a lovely yard walk into a negative experience for me as well as for herself. At the time of this writing, it is winter, so that option is out. In addition, her orthopedic specialist has forbidden her to go outside at all, unless she is in a wheelchair because her right knee has such severe osteoarthritis that he is trying to save it so she can stand and not be totally wheelchair bound. He does want her mobile inside the house on a safe, flat floor surface. I had tried to walk her around and through the kitchen, to the back of the house, etc. Anything to get movement. We did it once, then I forgot. You have to realize that any exercise requires a ton of extra talking on my part so it is very exhausting when you have heart conditions...it takes tremendous strength of chest muscles just to talk, much less exercise and supervise at the same time while repeating the same thing over and over to counter an Alzheimer patient's arguing response or to politely answer them on a wild variety of topics that such walking seems to prompt them to share. It is hard to focus on exercise and not get distracted!
4. Time Limits: this goal of exercise is not a simple one. It requires an hour by the time we get set up, actually do it, then finish and reinstate Mother to her schedule. Then I go and collapse in my bedroom, too worn out to do anything else that morning, depending upon how she responded and how much she wore me down and my own medical status that morning. All of that effort for a simple "fifteen minutes" of exercise. There are many days where other priorities scream out--getting medical reports copied for a doctor's appointment that day, ordering meds, giving eighteen eye drop treatments per day when her corneal transplant threatens rejection, dealing with some other crisis of "cannot find" that is upsetting her, racing to get bills or bank deposits done in time, answering company phone calls and tracking things, opening deliveries and sorting items, filling pill cases or finding something that one of my clients needs that afternoon...the list is endless. I have long since given up ironing any of my clothing...I am just grateful to have them washed.
5. We even hired home "companions" or aides to help so I could "delegate" but today's younger Generation Y girls are not trained and I had to teach it all plus they were not alert enough to stop Mother in time from doing something the wrong way, which would make her knee hurt worse. I tried both agency-"trained" girls and privately-hired girls. I love teaching/training but I did hope they could remember it or at least look at my carefully-typed or handwritten notes in their special binders. I began hiring two years ago and I hung in there for one and a half years, to no avail. They hate following lists or instructions--they want to wing it, ignore what I have specified and just let Mother do it any way she wants. That attitude applies to housework tasks, also. They excel in pleasant conversation.
The agency also made it a nightmare because State law demands that their nurse supervisor come here twice/month to check on the patient's progress and make sure the girls were not injuring Mother by doing the exercises wrong, which is wise. However, it became a nonstop scheduling nightmare for me to squeeze both the aides and supervisor into home visits along with our doctor appointments and all else going on in our home and lives--it was not worth the $20 per hour that I was being charged and the scheduling desk continually sabotaged appointments and confused their girls being sent to us. We had the issue of their staff coming with colds and sore throats, they agreed to wear my surgical masks provided but the nurse couldn't even tie it properly so it hung loose, not protecting anyone. No one cared, all were too young, too insensitive to hardships they were causing to us and they could not take instruction or double-check carefully typed lists. The final blow was when one girl took the time to change her clothes for some party instead of finishing doing 5 simple things on a list while I was at the dentist one day. It was the straw that broke this camel's back. I finally called a halt to the continual parade of strangers and my having to supervise non-stop. I decided that I would have to do everything by myself if it was going to be done correctly and safely with less stress on me and on Mother.
6. Do By Self: to help us stay on track, I created a PT schedule on a giant white foam core art board from Dick Blick's art supply store with our list of "Exercises--Bed" and Exercises--Standing" written and color coded in two columns so I could do them alongside Mother without having to refer to a piece of paper each time to get the sequence and function correct. We used it twice. Illness hit, I had various medical complications as did Mother and I soon forgot all about it. After leaving that five-foot-high board up in our dining room for months, I finally gave up and looked at it one day, realizing it was not part of the "decor" and I stored it in my bedroom where I stare at it daily across the footboard of my bed.
However, Mother has been getting weaker and weaker in her legs these past two years while we roller-coasted all over the place, trying to find a regular exercise system for her. She sits on the couch way too much and I was alarmed the other day when Mother happened to mention, "My legs are so shaky." Wow...I did not want more muscle atrophy so I knew something had to be done and soon but if I could not get the job done, at least the way I had been approaching it, then I really needed others to help. Should I call our new doctor and ask for a Physical Therapist order? Sigh. I remembered those Medicare orders are only good for a few weeks and we would be asking strangers to come in during the height of the flu season. Not a good trade-off. I thought again about daycare facilities--at least she would have a reason to move around there but it would be a huge problem for my husband who would have to drive us, then leave work an hour early twice/week just to pick her up "before 6:00 PM." That schedule is only good for caregivers who stay at home, who can also drive, surely not for my husband who would have to be the one handling the transportation. What are the pros and cons? Risks -vs- Benefits?
7. Daycare?
Besides the above reasons, we cannot use daycare facilities for "socialization, variety and a reason to move around" because they cost $50 to $75 per day and it is "mandatory" that you attend two days per week. That is a huge chunk of money for someone on just Social Security. Also, there are the issues of their workers being young and careless, distracted by other residents and staff activities, which could allow Mother to fall and break a hip -- thus creating even more high stress, suffering, expense and demands upon Mother and upon us -- plus you never want to confine any elderly patient in a room where ten, twenty or thirty other patients have a variety of diseases and viruses. Mother's healthcare is exceedingly complicated and demands a 24/7 balance in all areas. I would go crazy with her in a daycare facility, not knowing what the workers did or neglected that day and why Mother was in a tailspin each evening. The slightest neglect of one of her daily regimens throws her system into chaos. In order to properly oversee it, I would have to sit near her each time she went...and that is counterproductive to my getting respite as a caregiver.
8. There are also "Senior Citizen" daycare places but no medical supervision is provided there and I would definitely have to attend with her. She may not be able to track in conversation with others who are more alert at those places, so that would discourage her greatly to feel left out. We really are limited to specialized Alzheimer caregiving facilities where activities are geared for her capabilities and limited memory. I would like to do that on occasion but they "demand" two days/week and most likely would kick me out sooner or later.
DO or DIE TOGETHER!
No daycare facilities... Mother and I are buddies--joined at the hip now. She is too fragile to be left alone without someone who has the same caregiving perspective. Her PT and social life, diabetic testing and foods every 3 hours, her medical care and observation/charting of her symptoms, negotiating with all medical personnel and insurance clerks and entertaining her each day...are all on my shoulders. I have to be all things to Mother and try to not collapse in the process. My goal is stay alive long enough to take care of her final resting place before I die. I cannot even picture a return to society anymore for myself. In fact, I picture her living well into her one hundred years of age; she is currently 87...as a caregiver, you get used to this 24/7 mindset of caregiving and your whole life revolves around your patient when you live with them. You leave the world behind and the world abandons you. That is the life of a true caregiver providing full services and very few people understand what is really needed.
Reasons to Stay in Our home: Mother is familiar with things at home so she does not trip. She likes her schedule run the way she wants it done each day and since she is blind in one eye, losing sight in the other little by litttle, she deserves to have some "control" over things each day. It is not too much for her to ask and she hates the idea of going out into a "group" situation. I hate groups, also, so I understand that feeling. "I am getting too old to start over again with new people." True.
Also, in our home, she is very close to her "own" bathroom...something she would never have at any facility, sharing one or two bathroom stalls with many other people and that would worry her to the point of panic each day, rightfully so. Her social life? We laugh together and I do what they tell caregivers to do with Alzheimer patients...engage them in much conversation to keep their memory as sharp as possible, so I push Mom little by little with earlier remembrances and trying to "solve" problems around the house. She loves to help with advice and often a long-forgotten memory will pop up just in time to help me! That always amazes me--God's special grace. "Engage them in conversation"? Oh my...we talk about all manner of things and I even use Mother for my own cathartic release of emotions when I encounter rude people on the phone with these companies and offices I have to deal with daily or people make life hard for me. Mother listens politely, is always sympathetic but has no clue what it all means. She is very affirming. We have a good co-dependence situation going on here...smile.
Her dietary needs? That would have been a major problem at daycare facilities...it was all explained to me and it was very different at three separate places. None would have been able to provide the diligence and staffing needed to prevent her blood sugar from soaring and thus her mood from flying into a fury of anger and discontent at everything before her. They also evict you from the program if you have "explosive diarrhea" and I had visions of careless workers letting her have diabetic "sweeteners," refusing to check her records that in her case, she cannot have even those types of artificial sweeteners, then having a fit because Mother would lose bathroom control. With Alzheimer's, she cannot feel certain bodily functions any more...temperature and all else is off...so she really needs one-on-one care and constant personal assessment. Plus, the elderly move so slow, so even if she could "feel" the need to go to the bathroom, she would never make it in time and would be humiliated beyond the ability to accept it. Staying at home gives her privacy and dignity...and a decent chance to race to the bathroom.
ADVOCATE: You see, I am not willing to just throw Mother out to the wolves and "let things fall where they may"--that abominable attitude is the height of a lazy spirit, ignorance, negligence, lack of compassion and sensitivity and it is just plain mean to force any elderly person to go through such uncertainties every day-- it hastens the death of many an older person as their blood pressure from stress is pushed over the maximum limits. Being old is a LOT of hard work...not fun...and my mother has been a champion at dealing with all of it. I am proud of her efforts to try and stay cheerful and she does whatever we ask (if no sugar is in her!) She has totally worked her schedule into our schedule so she is not in the way. That in itself is a lot to sacrifice for any older person and I have thanked her for how easy she has made it for us, in that regard. As one person told me, "Your mother has a sweet spirit." Smile...yes, she does IF not allowed near one smidgeon of sugar.
Either I have proof of excellent non-stop supervision so she does not fall in a strange place, where tripping over things other residents drop would be a major concern, or Mother does not go. The only reason we would put her in that caycare facility situation is if I was hospitalized myself and maybe it would take that crisis to force me to "trust others" who are already proving they are not worthy of such high prices nor of caring for my mother each day. Instead, I have daydreams of waking up with Mother suddenly in the next hospital bed by my side...no break from caregiving! Not good...not healing for me, that is for sure!
ONE OTHER IDEA:
Another option for more mobility would have been driving her to various fun places but I no longer drive due to partial seizures caused by driving plus it would be a huge chunk of time away from home and Mother has a strict medical schedule to keep and I have three businesses I am trying to build plus a ton of never-ending insurance paperwork for her needs and ours--orders to process to get all supplies and food delivered to our house, etc. We would have to drag all manner of supplies with us.
I have finally found a 24/7 transportation service that takes us with her wheelchair, for an extra price, so I am hoping to gain courage in the spring to try it out. Strangers driving us? That is frightening in itself. If there is an accident, we will both be thrown into even more medical scenarios that could push both of us over the edge.
CONCLUSION OF THE MATTER:
So, a caregiver has to really pace himself or herself and consider the consequences of all decisions in order to show mercy to the patient AND to keep things running as smoothly and quietly as possible--Alzheimer patients CANNOT tolerate upsets and sudden changes in a plan nor do they handle large group situations well--it is too confusing for them. Being backed into a corner of sudden demands, encountering unexpected incidents and losing their necessary structured daily schedule terrifies them. Terror and fear of failure causes them to go into a verbal attack mode against the caregiver and raises their blood pressure and those trying to calm them and restore order... to the dangerous level of stroke. Is putting her in such situations really worth it? What are the benefits -vs- the risks? Do I have support back-up should things go wrong? No. We have none of those amenities. That leaves me with doing Physical Therapy here at home.
Copyright by Dorothy Marie Kucera, Omaha, NE 1-30-08 Please do not use without my or my son's written permission.
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