Our family needs your help. Our small 4 person 2 cat family is at our wits end with complicated medical & housing problems. I am becoming utterly exhausted due to the inability to properly care for everyone in our household at the moment. I just don’t know what we’re going to do if I can’t find someone to help us out.
I’m Jennifer Kellogg and the photo on the cover is my daughter Isabelle (Izzy) Day next to her beloved Grams. Colin Day is my amazing husband and Izzy’s super hero of a dad. Barb Kellogg is Izzy’s “Wonderful Grams”, as Izzy would say, as well as my mother that we’ve been living with for the last 14 years. I have a unique family as all 4 of us have been living day to day with completely different medical problems of which each medical problem has the ability to stunt the livelihood within a household all on its own.
Izzy being the youngest and most unique of us is a special needs kid that is 17 years old with a deletion of DNA. This deletion of DNA causes mental defects, cognitive defects, problems with gross motor skills, learning problems, heart arrhythmia, gastrointestinal problems, hearing loss, and she has an increased risk of skin cancer due to missing a certain part of her DNA. Izzy has been working with specialized teachers since she was three. She will never be able to catch up to her peers mainly because of her inability to comprehend simple concepts. Izzy is an extremely unique, sweet and lovable individual. She is fun and full of innocence. I couldn’t imagine her being any other way and I love every little bit of this kid. Izzy had been riding horses for horse therapy since she was 6 years old. Due to various circumstances she was unable to get much riding in the last year. Recently the trainer she’s had since she was 6 moved out of state and we haven’t been able to set up a new horse therapy program for her since COVID has become an issue here in Iowa. Izzy's been asking over and over when we can go ride somewhere again because she misses the horses so much too. She’s pretty much been stuck here at home since the week before spring break last year. Colin her super hero dad makes sure she gets some type of exercise every day though. Be it throwing rocks into the river (sometimes with a slingshot), going biking, hiking at the nature center, shooting baskets, or playing at the park (when they are open). I signed Izzy up for the international postcard club because I could see her getting a bit depressed and lonely due to staying home because of COVID. This kid was totally bouncing around like crazy when she started getting Postcards from people. It’s her new favorite thing. She‘s been showing off the postcards to her teachers while doing online schooling this year. Izzy has been a bit bummed that she can’t go to school for her senior year but with everyone at home being high risk we decided it was best to be safe rather than sorry. She has fabulous special needs teachers though that have been doing everything to help her out this year. One even brings by ice cream occasionally.
I am Jenny and I have Myotonic Dystrophy. Myotonic dystrophy (DM) is a multi-systemic inherited disease that affects at least 1 in 2,300 people or over 150,000 individuals in the US alone. Although often viewed as a muscle disease, individuals affected by DM may have skeletal muscle problems, heart function abnormalities, breathing difficulties, cataracts, issues with speech and swallowing (dysarthria and dysphagia), cognitive impairment, excessive daytime sleepiness, or diabetic symptoms. Myotonic dystrophy is one of the most variable and complicated disorders known. The systems affected, the severity of symptoms, and the age of onset of those symptoms vary greatly between individuals, even in the same family. In general, the younger an individual is when symptoms first appear, the more severe symptoms are likely to be. However, prognosis is as variable as the symptoms of this disease. I’ve had this all my life. I had to quit track in middle school because of it but I had no idea I was any different than other kids. I just thought I couldn’t hack it and was too weak to compete so I quit. I also have asthma and it makes life all sorts of difficult at times. Hypoglycemia also causes problems for me from time to time which is quite annoying. I have ACL injuries in both knee joints and the tendon in my foot is hurting so bad I can barely put weight on it just to walk. I also have a problem in my lower spine which causes problems laying down, sitting, or even standing for short periods of time. I used to hike, bike, fossil hunt, and be a very active individual. Unfortunately since it’s so painful to move at all I’ve become obese due to inactivity. Then a week ago I found out I have cataracts as well. Not a fun prospect for an artist. Due to all of these problems I’m now unable to hold a regular job. I was working as a bench jewelry for a good 15 years at various outlets and had been making beaded jewelry to sell on my own for several years. Unfortunately the motor skills and strength in my hands has degraded to a point that makes it extremely hard if not impossible to continue doing this at all anymore. I haven’t been able to work for years and it’s depressing that I can’t do the things I want to do anymore because of the Myotonia.
My husband Colin has heart problems and has had to have 2 stints put into one of the main arteries going from his heart. Usually they won’t put more than one stint in but he was a special case. A second artery will need stints added as well but they are waiting till it becomes worse before doing that surgery. He regularly has chest pains and usually ends up in the ER to get checked on 3-5 times a year. The last time we went they noticed his heart had atrial fibrillation which is why he’s been having so many regular problems. Colin used to play electric base as well as his upright base a lot but it’s hard for him now because the vibrations bother his chest. He wanted to become a pilot and even took many lessons. Unfortunately he’s unable to become a certified pilot because of his poor heart condition. Colin is a computer tech but due to constant repetitive motions he’s gotten tendinitis in his elbow and shoulder which causes a lot of pain from time to time as well as makes playing his upright base almost impossible at times. He used to play online games to wind down after work but yet again the constant repetitive motions makes the tendinitis worse so he had to quit that too.
My mom Barb has been hit with so many maladies throughout her life. She has been living with diabetes for longer than we’ve been living with her. She’s had multiple skin lesions removed due to cancerous cells. She has been plagued with gastrointestinal problems and has had tumorous polyps removed from the gastrointestinal tract. About two years ago she had her thyroid removed completely because it had cancerous growths within it. Then she went through a bout of radiation therapy that ravaged her internal systems. Not long after she finished her radiation treatments about a year ago she had a terrible fall. At that time we had no idea what happened or why her body declined so rapidly on her. She lost a lot of weight and we assumed it was due to a bad reaction from her radiation treatments. Throughout this last year moms body has gotten worse and worse. It looked like she might have been getting a bit better than all of a sudden she quickly took a turn for the worse. She went through months of doctor visits and taking every test they could think of to give her. In the mean time she began to lose her speech a bit and swallowing was becoming a real issue. Her constant choking at mealtime was beginning to really scare us. Then almost over night she was unable to speak anymore at all and could only sort of mumble or slur out what she was trying to say. Right after that was when she was officially diagnosed with ALS. ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Once she got her diagnosis her breathing became labored and she now needs a BiPap machined hooked up day and night in order to breath properly. She can barely stand and mobility is almost nill. Just flipping sides while sleeping is absolutely exhausting for her and she requires help just to do that. I am utterly astonished by how fast this hit her and it’s rate of progress as it breaks down her body.
I honestly don’t know who I’m afraid for more anymore. I suppose it would have to be mom at the moment because she’s going downhill at an astronomical rate right now. She was told when she was diagnosed that she only have 3 years left to live. Well we heard that before when a friend got ALS and he passed 3 months later. Mom just isn’t lookin real great right now and I have high doubts that she will hold out for 3 years. I’m trying to be optimistic yet watching moms condition downgrade so quickly makes it hard to keep that mindset going. ALS is a pretty frightening diagnosis. Mom was recently set up with hospice in order to make the rest of her life comfortable for her. Watching mom deal with ALS complications day to day is just tearing my heart to shreds. I try not to cry or fall into the abyss of hopelessness. However it’s truly hard not to do just that.
So far Hospice has set up a nurse to come once a week to give mom checkups. I have a number I can call for emergencies or if we need assistance. Once mom became unable to move around properly they got us a hospital bed and commode right away. They will also send someone to help her bathe once or twice a week.
Unfortunately our restroom isn’t set up well and is extremely dangerous so she’s unable to even enter it at all. The entrance is far too narrow so a walker or wheelchair are unable to fit. This is a real problem since she is now unable to use the toilet or even the shower to bathe. The commode hospice provided is their fix to this situation since they can’t remodel our home for us. Mom and her younger brother literally just paid almost $5000 to build a ramp on the front of our house. We’ll need it to take mom to the doctor office and I’m going downhill enough that I’m going to be needing it soon anyway too. So now that we’ve done that we don’t exactly have means to have work done on the only restroom our house has. Not only that but the cost to remodel the one small room would easily be 5 times the price of the ramp. I mean the walk in tub itself is like $7000 for one I would fit in and that doesn’t even cover the rest of the problems we have getting the restroom to work for people with disabilities. It’s just a complete, total, and utter nightmare. I feel nauseous just thinking about it. Moms already unable to use the restroom without assistance and now she can’t even walk into it at all even with someone trying to hold her. I’m not too bad yet but I have a seriously difficult time using the restroom as well due to my own disabilities interfering. I can do it but it’s not very easy at all not to mention just plain dangerous at times. I’ve come close to falling on multiple occasions as well and that just scares me.
Colin and I are also going to have to buy the house from mom because her future is so up in the air and the house isn’t entirely payed off yet. The last thing we need to deal with is being forced to move for any reason whatsoever as we are dealing with all these drastic health issues. This is already going to stretch us far beyond our means as it is. It’s hard enough just keeping up with all the medical bills we rack up every year because we all have so many health issues.
The hospital bed is nice but mom is constantly switching sides from one end to the other to alleviate pain and stiffness. She can’t physically roll over from one side to the other so instead she will flip her head to the opposite side of the bed. She goes back and forth constantly throughout the day and night. However she’s so weak and uncoordinated right now that I’m terrified she’s going to fall again trying to adjust herself or when she gets up to use the commode. Even when one of us is helping her it still scares me. I am physically unable to hold her. I can barely stand on my own anyway. So having one disable person assisting a more disable person is just looking for trouble. One or both of us are guaranteed to go down hard at some point. A broken bone would spell absolute catastrophe for either of us. My daughter Izzy tries to be super helpful and she truly does do a lot for mom as well as me however she can’t possibly be counted on to hold mom up if she were to fall while Izzy was helping her. Izzy can’t comprehend what is needed of her to help support a person as they stand or to stop a person from falling. She is very helpful but can only really do the things she’s able to understand and nothing more than that. Which is totally understandable considering her own disabilities. My husband Colin is the only one of us working right now and we are all completely dependent on him. He picks up where we all left off and does everything in the house we are unable to do. For a person with heart problems his entire life is entirely full of the most stressful situations that he has absolutely no control over. So where I am unable to assist mom during this time he is the one we all fall back on to do what we can’t. Colin helps mom the most around here as her body fails her. He was helping her into the restroom until even trying to help her in was becoming too dangerous. He is the only one strong enough to really assist her the most with mobility issues around here. He takes her to the doctor when she needs to go. He’s the one that’s always had to pick her up after she’s had a bad fall. Unfortunately that’s becoming more and more difficult for him because she’s unable to assist in getting up now due to muscle degeneration so it’s just him, gravity, and her. Colin does everything around here. He helps mom, he helps me, and he helps Izzy. All while working a full time job just to keep this household going.
Colin has an amazing boss though and they just figured a way that he can mostly work from home so that he can help mom out now when I’m unable to. So I usually stay up throughout the night and can assist mom during that time while also keeping an eye on her. Colin is going to help her during the day time so I can sleep however he’s going to do it while also working so he can’t keep an eye on her as much as I do. Izzy helps a tiny bit here and there but she has school and can’t be expected to do the harder things for her beloved grams. Hospice can only send a nurse out for checkups and when we need them for something. Hospice isn’t able to have someone here throughout the day to help out. We don’t have the money for a nursing home and I know that Medicaid will help with that but mom is dying from ALS and she doesn’t want to be alone without her family with her. She’s afraid of being alone without us and I want to keep her here so that she can be comfortable before she passes away. The nursing homes are full of COVID patients anyway and they aren’t letting in visitors. Even without this I would have a hard time visiting anyway because of my own issues. If she was forced to go to a nursing home she would certainly decline faster and she would most likely never see us again. Now we could get a nurse aid that can come to the house 2 or 3 times a day for an hour or two. That would help us out tremendously. Especially when I have bad days and am unable to do anything at all. With the weather getting colder she’s going to start needing even more assistance. I can only do so much physically and Colin needs to focus on work even when he helps as much as he can. Unfortunately Hospice can’t pay for a nursing aid. We would have to pay out of pocket and it costs about $46 an hour to have a nurse aid help out. If we had an aid come for 3 hours at various times a day it’ll cost us $4,140 a month. It would cost us $12,420 for 3 months. Which is ultimately $49,680 for one year. Moms pretty bad right now but she going to be needing more and more help as the ALS progresses. I’m having a very hard time wrapping my head around the cost of potential help. A nursing home was recommended because it’s cheaper but honestly she’s just going to decline faster if we put her in a nursing home environment. Her mentality is that if she goes in that’s the end and she would most likely let her body give out on her. Having seen it happen to several relatives sort of cements that mentality into a persons psyche. That’s not even with the extremely high risk of COVID there right now too. With her difficulties in breathing if she were to catch COVID or even the regular flu it’s basically guaranteed to make her pass away immediately. So if we can avoid that situation I think it would be best. I just want to lengthen moms time with us and make her as comfortable as we possibly can. I just don’t have the money required to make it a reality.
I don’t like asking for money and no one else here is happy that I’m doing it anyway. We just don’t have any other options at the moment. We need help. Now we are getting help from Hospice and they are absolutely wonderful but it just isn’t enough and they have no way to do anything about it. I’m already horrified that I put a goal of $75,000 for this. Yet when I look into remodeling the restroom as well as getting a short term nurse aid to come by regularly to help us the actual cost is going to go way beyond this request.
My mom had dedicated her life to writing grants with North Iowa Community Action Association in order to garner funds to assist low income families and those in need here in Iowa. My moms an absolute saint. She raised two kids on her own while working 3 jobs at the same time. Mom volunteered for habitat for humanity regularly. She worked with the United Way her whole life to help people. My mom always assisted those in need even if it meant giving them her own pocket money knowing it would never get paid back to her. I can’t even list all the things my mom has done for countless numbers of people all these years. My mom Barbara Kellogg always put others before herself and did everything in the world she possibly could to make life a little bit easier for those that were down on hard times. The roles have now switched and she’s the one that’s in need for a change. Even now she would never actually ask for help for herself when she absolutely needs it the most though. I just would like for this wonderful woman that sacrificed herself for others to be able to get a little something back for her efforts before she passes from this world. The better care she gets the longer we get to keep her with us. I feel lost trying to come up with solutions at the moment and I just can’t do it on my own because of all the health problems I’m facing as well. If you could help us out a little bit I would be truly grateful for any assistance you would be willing to give us in our time of need.
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