Good morning lovely people! Wondering if anybody has advice or wisdom they might be willing to share! We are converting my husbands den and bathroom to a downstairs master as his time climbing laboriously up the stairs is nearing an end. It’s hard to anticipate what needs he may have with this rare condition so that makes it hard to design a comprehensive space. We will be installing a ceiling mounted lift system to help transport him to the toilet, shower and wheelchair. Aside from this I have no earthly idea what is coming down the pike! All thoughts, ideas and experiences so gratefully welcome!
Blessings,
Tonda
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Strawhalos
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Ask for a home hospice evaluation as well. Sounds like he would qualify at this point. Palliative care could be started if not home hospice. That would lead to hospice on review of the situation.
Thank you for the advice, it was so helpful. Social services will be contacting us to offer their input and professional advice! The lift system is offering an in home consultation as well. Again, I appreciate your suggestions!
It sounds like you have a good plan and that you’re on top of this regarding what needs to be done. I’m actually taking things slower because diagnosis’s change, decline may dwindle and financially I wouldn’t be able to complete a remodel at this time. You deserve an award! I imagine that if our master bedroom were upstairs that I would install a chair lift before converting an office. Maybe it’s not as involved as it sounds, but I usually wait until something is actually needed before a huge expenditure. I really don’t have the luxury, unfortunately.
You may feel like you’re not prepared and overwhelmed, which is understandable, but you’re doing all of the right things. I can’t think of anything that you haven’t already mentioned to add to your list.
Thank you dear girl. We actually had plans drawn up to install an elevator but should there be a fire or some electrical failure I’d hate for him to be stuck upstairs! Hence the ground floor accommodations. Gosh, there are so many things to consider! I am meeting with a social worker that RUVO put us in touch with that apparently can advise on these matters.
I hadn’t considered a fire! Good to get Ruvo involved. Please let us know what other ideas they might come up with.
I’m lucky that our master is on the main level. I have two beds pushed together to make one giant one. My bed is a twin, hubby’s is a queen. Both beds have remotes so that we can lounge and read or watch TV together. On rare occasions when hubby’s twitches are at bay I move over to his side of the bed for cuddles.
So far I’ve been fortunate because his progression is slow, or maybe I’m in denial. I bought an electric wheelchair that he can operate with one hand but then he ended up not really needing it. I’m afraid by the time he loses full ability to walk that he will not have the reasoning skills needed to operate it. So, I’m a bit shy about purchasing other items until they are needed. We were so spoiled before Covid-19, now it takes weeks to have things delivered.
Jeff has given good advice. It's best to prepare for all eventualities rather than have to revisit and alter things later down the line. Its so hard to have to contemplate the worst case scenario but preparation early on is the key. Downward turns can happen literally overnight with these neurological illnesses as happened with my husband. I thought we were doing OK as he could still get up the stairs, albeit very slowly. One day he was going up, he sank to his knees and that was the last time he did the stairs - all in the blink of an eye. I don't want to alarm you but sadly this can be the reality of this hideous disease.
Thank you, Hils💜. We too are finding that changes and limitations are occurring almost daily. I’m sorry about your husbands experience... it feels like one more piece of independence gets whittled away. I’d like my husband to be familiar with the new bedroom layout before we actually have to utilize it. He doesn’t adjust to change (even in his own home environment) due to this condition. I appreciate your input greatly.
Yes, I remember so well how any changes caused Rod so much agitation. In the end, even getting him out of the house was not worth the challenge because he just could not cope with a different environment. Rod lost the battle just three weeks after losing the use of his legs - I firmly believe he gave up then - he'd had more than enough. You are doing a great job Tonda and as I said before, getting things organised now will reap the rewards in the long run. I am sure you will be feeling very overwhelmed by everything but somehow you will get through each challenge as it presents itself. Don't ask me how we do it cos I am still trying to work out how I survived - probably because of the deep love I had (and still have) for my amazing husband coupled with a resilience that I didn't know I had.
Your love for your husband so touched me❤️. I’ve had many people ask me how I can do this. My response is: How can I not? It’s amazing to discover what we’re capable of isn’t it? I can’t imagine not making his life as joyful as I possibly can. This gentle giant always had and will always have my heart!
Yes indeed, we really are so much stronger than we think. If I could have been granted one wish it would be that Rod and I could have grown really old together, the material things in life would come nowhere near that. That was not to be so I will be content with the 46 years we had - how did I get that lucky? How lucky is your gentle giant to have you and you him. Cherish each day.
As others have said get all the advice and help you can and go for it. We adapted our room and it worked throughout the illness. My wife died last year and now I'm alone I've converted the room to a man's den. While my wife was ill I built up a stock of hand sanitizer which is coming in very useful in the current coronavirus crisis.
I found an Occupational Therapist to be the best to offer practical advice during my husband's illness. Hospice was able to arrange the OT visits for us.
Dear Tonda. I am sorry that I have not replied sooner. I had intended to do so. We converted Nigel's office/den into a wet room/drying and equipment storage room. We had wanted to make it into a bedroom too when it became obvious that Nigel could no longer safely use the stair lift, because of what we then thought was CBD. We were unaware that in the UK, which may not be the same as in the USA, there is a set distance between the water and any electric plugs that you may need in a bedroom. Nigel had an electric bed so the bedroom part was ruled out as our room was an inch too short. We had to eventually move into a bungalow (one storey home). Good luck with the conversion and with making things easier for your husband. Love AliBee.
Thank you AliBee❤️. Fortunately we have existing electrical and plumbing! We’re just trying to fully understand what our needs will be moving forward. My husband had another horrible fall this weekend. He can still walk but his hands are virtually no use to him so sadly his head breaks his falls! We laugh together at the road map of scars on his poor head! I should never have told him that scars make him sexier!🤣
It’s so scary when they fall. Funny about the sexy part 😂
My husband makes loud sighs, groans, grunts, whatever you want to call it, (really loud noises) while climbing in and out of bed. Except in the middle of the night! He thinks he can sneak out of bed to go to the bathroom by himself. Every night he tries so hard not to wake me and every night I have my built in super charged mom-dar hat on. I can be sound asleep and somehow I know instinctively that his barefooted feet are reaching for the carpet. My adrenaline goes into overdrive until he’s back in bed and tucked in.
I’m sorry about your husband’s weak hands. My husband’s right hand is often curled into a fist and he holds it as if it’s attached to his waistline. I can open it up and massage it but it’ll go right back into a fist shortly after.
Anyway, best of luck with the remodel! I’ll be curious to hear what the therapist suggests.
It is amazing how one is usually instantaeneously awake isn't it. I normally was but I was ill one time and did not wake and Nigel managed to get himself out of bed and he and his catheter, without the night bag which was still attached to the bed rail, were to be found sitting in his riser recliner quite happily when I realised he was not there. I don't know how he did it as he would normally have been grunting like your husband. Nigel grunted/groaned a lot so he was nicknamed 'growly bear'. One day our lovely carer told him that if he did not behave himself and stop being so noisy she would put him in his wheelchair outside the front with a Paddington hat and a jar of marmalade and a sign saying Free to a good home'. Nigel gave her one of his 'looks' and replied really clearly 'I would prefer honey'. Thank you for bringing back a nice memory xx Ali Bee
I love the sexier bit !! Nigel fell frequently so I bought 2 medium bean bags [1 for bedroom and hall] which, if I saw him going, I could immediately kick over to his anticipated landing point. It worked well a lot of the time. Did not work as well on carpet.
The other thing we had in the shower was a flat entrance to it so he could be wheeled in backwards and half height doors, which shut after he was in so that whoever was washing him could hold the shower and did not get completely soaked. Good luck xx
We had an extra garden facing room with a utility room downstairs. When Chris was dignosed I had the utility room converted into a wet room.
He could get about with my help until one day I realised the stairs were too much. He already had a hospital bed due to incontinence issues. We had it moved down stairs.
He was managing okay until he had a UTI and pneumonia. He had a week in hospital , refused a peg and was nursed at home with palliative care for 10 weeks when he died. It can all change so quickly.
But there will definitely be a time when he cannot manage stairs - although Chris always thought he could !!
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