Hi, I just registered today to vent out some really heavy emotions. My aunt, now 45, was diagnosed with RRMS in 2000, however, none of us knew about it until after she experience a severe relapse in January 2013 which put her in hospital for a week. Prior to the attack, she was having balance issues and vertigo (since November 2012) but I personally think she was experiencing symptoms all the way from summer. When the nurse at the hospital told us it was her M.S, we were shocked (I did not know what it was back then, I had only heard of it a few times).
My aunt said that she didnât want anyone to worry about her or treat her like she was ill so she decided not to tell us when she was dxâd in 2000.
My aunt, where do I start? She is honestly the most amazing aunt anyone could possibly have. She does not have kids of her own but she has treated all my cousins and I like as if we were her own children. I have so many beautiful memories, she is honestly the definition of the word âcoolâ. She would spoil us all and was everybodyâs rock. She was completely independent but because she isnât married (divorced 2 times) she lives with my grandma because she doesnât want to move out and leave her all by herself.
So anyway, my grandma and my aunt have lived next door to us ever since I was about 4 years old (I am now 19). After her severe relapse in Jan 2013, my aunts health has slowly gone from bad to worse. At first she was just having mobility issues which only included some dizziness whilst walking. By summer 2013, my aunt seemed to have gotten a little better and was finding it easier to walk, her mental state had changed a little. Not drastic, but just a little to the point where we noticed. She seemed to be doing pretty well until September 2013 which is when began using a cane, after a month, she began falling over a lot whilst trying to walk. She fell a few times on our street and my mother and I would have to run outside and help her up (my aunt always laughed) as my mother and grandma would tell her off. I miss those times.
Anyway by April 2014, my aunt could no longer walk more than 20 metres and by June, she was wheelchair bound and could only stand and walk a few steps before her legs gave in. She was always stubborn and always fought against her M.S, even when she couldnât walk, she would somehow find a way to walk. She would hold the wall and walk and she fell so many times yet she just carried on trying. I also forgot to mention that by now, her cognitive issues were increasing, her left eye was slightly blurry and her speech was a little slow. She also had one of those hospital beds with the reclining mattress placed in the living room where she has been sleeping ever since June 2014.
Now this is where my heart just aches, her health began deteriorating further since then (just when I thought she was getting better) and she can no longer walk. She has incontinence and bowel problems which means she has to wear adult diapers (since August 2014) her speech is now very slurred and her voice is very weak/tired and she has memory problems and sometimes canât even recognise us. Sheâll have to stare at us for a few seconds until she realises and shouts our names in delight. she still has use of her arms and hands but I donât think theyâre that strong anymore. She no longer uses her smartphone (she loved her phone) and refers to her home landline as the âblack phoneâ which she now uses to speak to her nurse whenever she calls.
Sheâs been like this since November and itâs heartbreaking and I feel like I canât take it. I just wish this was a sick dream that would end. Weâre all sad for her but I am having an extremely hard time coping. my grandma is her carer and she feeds her, clothes her and she used to shower her twice a week (they have a shower in the garden) which is directly outside the living room). My aunt has gained a lot of weight and cannot sit upright, so whenever my grandma has to get her out of bed and into the wheelchair, she calls my dad over and they both pick her up and put her into the wheelchair. My aunt is in a lot of pain, especially when she has to sit upright, she groans and it breaks my heart. I donât know whether itâs just muscle weakness in her back or whether itâs the nerves in her spine. This past month, due to the fact that getting my aunt out of bed is too difficult for my grandma, she now only showers her once ever two/three weeks so my aunt has started to smell. Itâs so heart-aching and upsetting I donât know how to cope.
I went to see her on Sunday and seeing her just laying helpless on the bed, staring up at her ceiling (even though the tv was on) made me tear up. I know sheâs in pain, how severe? I do not know but I know she suffers each day and she seems to have become so weak. When she breathes, it sounds similar to the way someone breaths when they are asleep (deep breaths) she also has swallowing issues (not so bad now) but she does seem to cough and choke sometimes when my grandma feeds her. She just looks soâŚdifferent and by different I mean a very bad different. I canât bare to see her like this, sheâs now disabled. Iâm not sure on her mental
health but sheâs obviously depressed but acts like she isnât so WE donât feel sorry for her, so WE donât feel sad. She hates talking about her M.S and weâve offered so much advice lately after researching daily. I suggested a change in her diet (OMS diet) and she just doesnât respond to it. She nods and when she does that nod I know that deep-down she doesnât agree. A few times, she cries and calls out âmumâ and then when my grandma hurries up to her she says âtake me home. I want to go homeâ, and my grandma has to convince her that she is at home. Sheâs done this twice when me and my cousins have been round and my grandma has to point towards us and say âlook, all your wonderful nieces and nephews are here. youâre homeâ. On Sunday it was painful to watch because my grandma was out for half an hour and I was with my aunt and as soon as my grandma returned, my aunt called her and then started crying. A few seconds before she cried, she looked like she wanted to say something but couldnât get her words out and then she cried and said âI want to go homeâ. I felt like I was being stabbed, it is so so so so terribly hard to see the person you love in such a miserable and poor state. She asked me to recline her mattress and so whilst I held the button that controls the position of the mattress, my aunt grabbed hold of the small handle-bar above her bed. A few seconds after, she grabbed hold of it again and then again after that. I canât imagine how much fatigue and pain she is in. Does she feel like this all the time??? What kind of life does she have? She wakes up and lies on her bed all day. Sheâs probably in her wheelchair for 20 minutes a week.
social services called to ask about my aunt and they had no idea that she has gotten this bad (since summer 2014). They will be coming over on Thursday and fill a form out with us which will allow them to make further changes to my auntâs and grandmaâs home. My aunt really needs a hoist to help her out of bed and changes to their bathroom as well.
Iâve watched my aunt decline slowly from being a strong, self-reliant independent woman to being bedridden with cognitive issues, slurred speech, very poor sight in one eye, memory issues, bowel problems and incontinence. Iâve been feeling absolutely depressed since January. On Sunday about half an hour before I left, my aunt was falling asleep and I noticed that she was snoring very loud and would stop breathing for a few seconds which would lead to coughing and choking in her sleep which would wake her up. Iâd run towards her bed and ask her if she wanted me to recline her mattress a little and she nodded. Even after, she continued to choke after a few minutes (I am convinced this is sleep apnea). Thankfully, a few minutes later, my grandma, my mum and my mumâs sister arrived (who in fact has a disabled child who cannot walk) and when she saw my aunt choking she immediately instructed that we turn my aunt on her side. once we had done so, my aunt said she felt better and my grandma said that my aunt has been sleeping on her back for ages and snores very loud. From now on, my grandma makes sure my aunt sleeps on her side. Iâve read that sleep apnea worsens fatigue in m.s so could this be why she is SO bad right now?
lastly, whilst my aunt was trying to sleep on Sunday, I noticed her leg. It moved twice, im not sure if this was a spasm but it moved (kind of looked like she wanted to bend her leg) I immediately said "did you just move your leg by yourself?) and she tiredly went âhmmmâ. I donât knew whether this was a spasm or whether she generally tried to move her leg. My grandma also said that sometimes sheâd come down in the morning and see my aunt sleeping on her side. something gave her the strength to turn herself over during the night.
Before I left, I looked at my aunt and the image of how tired, weak and vulnerable she looked still flashes through my mind and breaks me. I feel like she doesnât have long left and itâs really scary and it hurts. I feel guilty with everything I do. Whether itâs walking, eating, using my phone, using my laptop, showering, driving. Since Sunday Iâve been crying up to 5 times a day and my aunt is always on my mind. Iâm on Ms forums, readings peopleâs experiences all day long in hope that they help me or give me hope. I feel demotivated at uni and angry at the world, I have type 1 diabetes myself (dxâd on new year 2013) and I havenât taken good care of my health for two weeks. Iâve stopped going to the gym because the guilt is too much and Iâm crying while typing this. How can nature be so evil? How can a disease be this bad? Why does my aunt have to go through this? I really need some help, I feel miserable and hurt and I just want her to be better again. I want my aunt back!!! I canât see her go through this! I canât take the pain. I know my aunt is in pain and I canât imagine how depressed she feels just laying on that bad. she even said âIâm just sick of sleepingâ. I feel like she doesnât want to live anymore. Iâm trying all I can to help but I canât, and I feel helpless.