Elderly mother - terminal diagnosis

[filchards]

My DM, 88, was diagnosed with a brain tumour in January. She's going downhill quite quickly, although nobody has said how long she has, or what the trajectory will be. My Dad can no longer cope with her at home, after a couple of falls. She's now in a nursing home. And under a palliative care team of a nearby hospice where she may end up (although the home does palliative care too).

She's not in too much pain it seems, but is uncomfortable. Has some mobility (using a frame or sticks). Trouble getting in and out of chairs and bed. Needs help with toilet and washing. She's a bit confused and struggles to find words but she's also reasonably lucid.

I don't live nearby but visited for a day this week to see her into the home. I really didn't like it all. The staff seem lovely but the building is shabby. Her room is ugly and pokey. And the common areas are scruffy. There's a little bit of outdoor space but it's just tarmac with a pond and some planters. No grass. There are a few trees. Near a main road so quite noisy. I feel heartbroken for her because she loved her little garden. Her sight is going (partly due to the tumour, partly due to macular degeneration) but she was/is still able to see colour and light/dark, and enjoyed watching and listening to the birds. There's no chance of that now and I'm so unhappy about it. I looked online at other nursing homes which were just so much nicer, but Dad went for this one because it's closest to home and he'd heard good reports about it.

I guess it's his decision but I really really hate the thought of the poor woman spending her final days in a place like that. She is also, apparently the fittest of all the residents (there are 36 of them) so some of them are probably really not very well at all so I'm not sure there's going to be much interaction. Dad will visit for most of every day but I wonder what the 2 of them are going to do. Sitting in a crappy little bedroom, worse than a student bedsit, 2 miles from their lovely house and garden. Seems absurd. I'm starting to wish things would just progress and she can go into the hospice - that's such an awful thing to think. But what quality of life is there now? And my poor Dad. They've been together since Mum was 17. 71 years. I don't know what on earth he's going to do without her.

Dad's taken some furniture there, and will take a speaker for her to get music on Spotify (I think she can just about still use her phone). There's a TV (although she doesn't see well). I'll ask about plants and photos etc.

What can I send her to do? She used to be very creative - always sewing, knitting, crocheting etc but due to arthritis in her hands, and poor sight, she's gradually lost all those abilities. I'm not sure she'd have the attention span for an audio book. I'm thinking about sensory things, but not sure what.

Any advice from people who have been in this situation gratefully received.

Your dad's company will be most important to her, so it makes sense he chose a home close to him And the staff being good is the next mist important and it seems to score highly on that too. I'd stop fretting about the lack of a garden and try to get as many visits on as you can.

@RedHelenB - thank you. Am I looking at this all wrong? I'm just like 'what a bloody dump and how bloody boring'. But I'm not 88 with a brain tumour.

Although I'm thinking of my Dad's discomfort and boredom too, but at least he goes home in the evening (to look at their home without her in it).

Please don't worry about the place being a bit shabby. Our DMIL went into a local home and it was definitely shabby but the staff we're wonderful and she obviously felt safe and trusted them.

Are you able to take in a couple of house plants for her room? Maybe a nice throw and some photos blown up and framed?

Will they let you put a bird feeder on her window if she's on the ground floor?

I know you are saying it's shabby , but I really think the main priority is caring staff and that will be why your dad heard good reviews . Yes it would be great if she was in a place with beautiful gardens and views and amazing staff but something has had to give and it's the surroundings in this instance . But I'm sure having attentive staff that actually enjoy looking after people will be the most important thing for her x

The most important things are not that it is shabby.

They are that she can spend loads of time with your Dad and the staff being caring.

She can't see that it's shabby or the room is small. She can appreciate that her husband can spend all day every day with her.

@SiouxsieSiouxStiletto - she's on the first floor unfortunately. Apparently this was an upgrade so goodness knows what the original room was like. She can see a tree from the window.

My sister (who also lives nearby) will probably have the place dripping in plants soon (and I'll check that with my Dad). I live some distance away and I don't know when I'll next be there - probably a couple of weeks. I think Dad has taken some of her favourite cushions.

I'm wondering about sensory things for the visually impaired but I don't know what. I've had a look online but can't see anything inspiring yet.

I'm thinking of scanning photos onto a memory stick and seeing if Dad can play them on a laptop when he visits. Will photos be a comfort, do you think? If they're big enough for her to see. Maybe with some background music.

I'm wondering about things to smell. She doesn't like perfume, but I'm wondering about some basic essential oils or something.

Please try to keep your feelings about the place to yourself rather than talking to your dad about that. It's hard enough for him to have made that decision without thinking he's made the wrong one. I'm so sorry your mum isn't well. It must be really tough for you. 💐

You can get bird feeders which stick on to windows.

@determinedtomakethiswork - I've been really, really careful with Dad. The 2 of us looked up places online (from our respective homes) and narrowed it down to this one, and one other. From the websites, we both preferred the other one (also a bit shabby, but nice big gardens) and I was a bit rude and jokey about the one she's ended up in, but we didn't talk in any detail about it. Then we both read the care reports and it was on that basis that Dad made the decision. It came out by far the best. So I can't really fault him for that. And I'm glad he's close - it means he can make 2 trips a day as it's only a 10 min cycle ride (yes, he's still riding a bike at the age of 86) rather than having to travel further or hang around all day. My sister is within walking distance too, so that's good (although I have issues with her but that's another story!)

She may not like perfume but does she have some toiletries that she loves?

When DMIL went into a home we made sure she had all of her favourites plus a few nice hair clips for her fringe.

And I think that yes, photos wood probably work. How about getting her a photo throw for her bed?

And you can always buy a ton of biscuits that she can scoff share with her visitors

@SiouxsieSiouxStiletto - she is very fussy about toiletries - hates anything with perfume. She has very sensitive skin and currently lots of sores because of side-effects from the steroids, so I don't want to interfere with whatever she's using for that.

I'm wondering though if a few drops of lavender on a hanky might be nice. Just to sniff. I was walking around my garden today, just sniffing things, and realise what a joy that is. Just to sniff things.

She doesn't do sweets or biscuits.

She's always been hard to buy for in good health, and now it's even harder!

A photo throw is an excellent idea - thank you.

I'm wondering though if a few drops of lavender on a hanky might be nice. Just to sniff. I was walking around my garden today, just sniffing things, and realise what a joy that is. Just to sniff things.

I've been in Hospital a few times and always appreciated a little bottle of lavender oil. Especially on my pillow do that you're not going to sleep with the "hospital smell". It's certainly worth a try.

If you want to get her a little gift have a look at Jelly Dropss*. You could serve them in a nice China bowl and they would help to keep her hydrated. Actually they would probably be good for your DF given the weather

I know what you mean about being difficult to buy for too. I have no idea what my DM actually likes...

My grandmother has a digital photo frame that is in slideshow mode so it (slowly) changes the photos. She also likes a high quality reed diffuser with scents like Lavender. Her room always smells gorgeous (but not strong or synthetic).

I would imagine that experiences would be far more meaningful to her than stuff. Can you call every day? Visit as often as you can and take her out?

Ah don't worry about shabby, staff are the thing that make or break a care home imo. My mum is in a care home and honestly it looks like an old Blackpool guest house but the staff are incredible and so caring.

Photo blanket is a good idea, I got my mum a dementia music player (your mum may well have the cognitive ability to use something more complicated), I put all her favourite music on it and we sometimes listen to it when I visit. Generally my mum dots about the place and chats to the residents who come out of their rooms (22 people live there and maybe 15 are out and about on a good day). My mum likes a magazine, not sure she can actually read any more but she likes looking through them nonetheless.

It might also be worth ringing the Macular Society to ask if they have any suggestions of things that she might like and I'd also speak to the Palliative Care Team.

If she has a smart phone or something similar, there is an RSPB app called birdsong radio that plays different types of birdsong soundtracks.

You can also get some lovely outdoorsy sound effects on YouTube, Spotify or the Calm up.

Aromatherapy Associates do an essential oil called Forest Therapy which might be worth looking into.

I'm back again.

I'm wondering if the care home would speak to me about my Mum: how she is and what they're doing to support her? I have so many questions and I don't want to stress my Dad out by asking all the time. I don't want him to think I'm not trusting him. I don't want it to get back to my Dad that I've been asking but, if I rang up the care home tomorrow, would they speak to me? I don't know how it works with patient confidentiality.

There are questions that I have that I don't want Dad to have to answer. I have no idea how long Mum has got or what the decline will be like. I know nobody will have clear answers, but I'd like some idea of what to expect so that I can prepare myself. Not only emotionally but also logistically - I don't know how often I should plan to visit, and for how long. Do I go away on holiday or not? I'm absolutely 100% capable of having these conversations, but it's not going happen with my Dad as he either doesn't really know or doesn't want to tell me.

How far are you away? Maybe you need to have another day there ( or more?) Does she have a DNR? Maybe you and your sis need to have a one to one with her doc? TBH the only thing she probably wants is visits and time with you.

If you have met the manager of the Home they may give you some details, but its really difficult over the phone as they can't really ascertain your identity., and it really is only supposed to be with the next of kin.
Unfortunately giving a time on how she has left or how she will be within herself is nigh on impossible. So questions about holidays aren't able to be answered, the home themselves may not know. Although what I will say is if the hospice is actively involved then it MAY not be too long. I would visit as often as you can though, for both your mum and your dad. The hospice staff would possibly be the most knowledgeable but again there is the problem of next of kin. Why not ask your dad if he would appreciate some help and have you also put down as a next of kin - you are perfectly able to have more than one

Asking what support they are giving should actually be ok, as should how she is doing - these are very generic and not anything necessarily private l hope this helps a wee bit xxx

What about setting up an Amazon echo or similar so you and your sister can chat to her easily. It's a bit of a fart to set up but once they are up and running they are great. You can set them up so you can 'drop in' and say hi without her having to do anything.
Needs Wi-Fi obviously.

Not sure about the lavender oil suggestion as all the old people I know don't seem to have ,I h of a sense of sell. Same thing with their hearing. Road noise wouldn't be an issue for them.

Did you consider live in care for your mum at home?

@Lovepeaceunderstanding - I think Dad looked at the idea of live-in care but rejected it on the basis of cost. Also probably would be weird for them having someone live in but life is v different now so need to change mindset.

I wanted to ask Dad about this again but Tel con yesterday with him wasn't going well as I think he can easily feel attacked if asked too many questions, however gently. He's proud, independent and stubborn.

I have no relationship with my sister, who is a complex person. So no help. My brother lives in Canada and I'm trying not to worry him. I reached out to my sister in law but she ignored me .

Times like this are so difficult and emotions run high. I think that we often try to control the scenario in our minds by trying to be practical and organise things to try to being some sense of rational order to it. It is our way of coping with these situations. We feel helpless and so we try to do something. We all look for something or somebody to blame and take our anger out on. I don't know if I have explained this very well - it's just my experience of being through the same on several occasions now. It is certainly not in any way critical of your posts. You have trying times ahead of you. Sending love and strength to you, your Dad and your Mum.