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elderly sibling

(22 Posts)
gottabebetternow Fri 01-Jan-16 13:10:00

my dear elder sibling (76) has been enduring , serious illnesses including cancer.

She has been hospitalised since june, and is now in a nursing home many hours drive from me, her nearest sibling.

DSIS is childless, her DH in care with dementia.
Basically DSIS is alone and suffering deep emotional trauma and physical pain.
I have supported her throughout, at great cost to my well being, but will always do my best for her.

New Years Eve, was a total meltdown day for us both.

Finally, I was informed via her council finance department that due to funding criteria my sister will lose her (council) flat that has been her home for over 50 years.

I totally accept this as she is no longer able to walk/sit or care for herself in any way at all.

Her nursing home is perfect in every way, the nursing care, her meals, the staff, it can't be faulted in any way.

So, what is my question to you kind people?

How do I support my sister emotionally now that she knows conclusively that her DH will never return home, and she will never return home.

Due to her DH dementia they will never meet again.

That she will spend the remaining time of her life in the nursing home.

She has totally freaked out to the point of total denial, saying she will discharge herself today (of course she knows and agrees it is not possible,) but today, I even feel her physical pain, the intense sadness and loss.

I am sure in time the emotionally explosive situation yesterday will recede, but the truth is....my darling sister is totally alone....as I am so far away and a pensioner myself.

The nursing home is in cricklewood, north London, and takes me sometimes 3/4 hours to get there, then the same coming home.

How has anyone else handled this, I simply want my sister to feel she is loved, safe and secure.

pocketsaviour Fri 01-Jan-16 13:17:11

OP, I have no real advice, but couldn't let you go unanswered.

What a sad situation for all three of you, my heart really goes out to you.

Is your BiL's dementia at end stage or does he still have moments of clarity? Are they able to speak on the phone, or write letters?

gottabebetternow Fri 01-Jan-16 13:25:41

no
the last time my sister rang him, he became angry and told her not to ring him again, even was she on the beach, so she has that loss also to deal with.
we speak constantly all the time on the phone, but it's not the same as having a hug and arms around you.

She enjoys tv, which she watches day/night as she is unable to stand/sit.

I guess the fact is that mentally she is alive and vibrant, it's her body that has let her down.
I suppose I am looking for that magic wand that doesn't exist!

junebirthdaygirl Fri 01-Jan-16 13:37:35

That's very sad. You sound like a wonderful sister. She needs time to grieve and it's very understandable. Do the nurses and manager know what has happened so they can support her too. Is there any support worker chaplain or person like that she has a relationship with. This is not easy. You are doing your very best but you cannot change the situation. Look after yourself too.

JeanSeberg Fri 01-Jan-16 13:45:50

Would it be possible for her to move to a home closer to you?

deste Fri 01-Jan-16 13:47:41

Does she have a laptop or iPad so you can Facetime her. Very difficult situation, so sad.

loveyoutothemoon Fri 01-Jan-16 13:56:34

I don't think it would be a good idea to move her. Her home sounds perfect. Just see her as much as you can and the guilt should get easier in time.

Penfold007 Fri 01-Jan-16 13:57:03

76 is very young to be placed in a care home. Is there no way she could go home with a care package? She sounds as though she has capacity to make her own decisions and she doesn't have to agree to live in a care home if she doesn't want to.

loveyoutothemoon Fri 01-Jan-16 13:57:06

Facetime is a good idea.

loveyoutothemoon Fri 01-Jan-16 13:58:46

Sounds like care at home wouldn't be enough, even 3 or 4 visits a day. She needs round the clock care.

florentina1 Fri 01-Jan-16 14:26:32

Please contact the Red Cross or AGEUk. Both these organisation may be able to assist with arrangements for your sister to visit her husbands.

They have both helped my Stepfather.

gottabebetternow Fri 01-Jan-16 14:45:52

thank you all for the replies.

*I offered to buy her a ipad. but she has just about managed to learn to text and doesn't want one.

*I also ask her constantly to consider a transfer closer to me, but she feels it would be too traumatic for her, which I understand and accept.

*The staff/managers of the home are aware and are very kind and caring to her, especially as she is so vibrant mentally.

*There is no way she can go home, even with a care package as she frequently suffers intense pain/medication through the night.

Also she has no one to call upon at all close to her home.

*She has been rushed to hospital for resuscitation 3 times since june, and needs constant monitoring and nursing care.

*I can certainly ask if it is possible to visit my brother-in-law in his care home which is a distance away, but as any move for my sister needs to be by ambulance on a stretcher now.

So, to be honest I don't quite know what I am asking now!
I see her tiny body lying in her bed, knowing that her social interaction is with paid staff ....but no family....I just feel so sad for her.

N3wYear2016 Fri 01-Jan-16 15:06:07

Dear Gotta

I believe that I remember your previous posts on MN

Lets look at this from another point of view

Your sister and her husband although unable to return home or be together are hopefully in the BEST possible place that they can be at this time

eg
They are warm, clothed, clean, fed, medically looked after with have 24x7x365 care (this is a positive)

These decisions are not made lightly by the people involved, family or other outside agencies

Due to circumstances (not lightly decided) your sister will be unable to return home. This is the reality. This situation does occur to other families too.

I can only offer you my sympathy and best wishes

If you tried to move your sister nearer, I dont know how much "red tape" and cost would be involved

Look after yourself

You could try asking Age UK or Age Concern for help

MatildaTheCat Fri 01-Jan-16 15:15:05

My mil is in a nursing home due to physical frailty but is cognitively fine. It is really depressing because almost everyone else has dementia except those who are virtually bed bound.

She is lucky because as a family we are large in number and she also has friends who visit frequently.

If your dsis cannot be persuaded to move nearer to you then all you can do is phone as often as you can to chat. If she watches a lot of tv there's a topic that is easy to discuss. The news, your doings etc. I would try to call daily for 5-10 minutes if possible. She may also appreciate cards and letters. Are other family members calling? Mil loves hearing from the younger family members.

If the care home is one of a chain is there any possibility she might even do a visit to one nearer? Sunrise are fabulous and have several homes. If she refuses outright there really isn't much more you can do other than support from afar.

gottabebetternow Fri 01-Jan-16 15:20:44

Yes,

Statement Of Facts.

Positive and excellent quality care 24/7/365 .

No possibility to return home.

I understand this has always been the case when someone is too frail to care for themselves....even if they have family around who would help....

It's just that finally realising that the nursing home will be dear sisters home for the remainder of her life, felt like an emotional explosion.

She responded by shouting (the first time ever) that she would discharge herself.
Shouting......
Hating her cancer.
Hating her back ulcers.
Hating her leg pain.

She felt like all hope was taken from her.

She always believed that she would become stronger eventually and go home.

That was what has kept her focused and optimistic until now, that surely she would improve enough one day to go home.

Now she knows it won't happen.
Maybe in a short space of time she will accept that she is actually in a better/safe/secure environment now and appreciate what she has.
It's just hard finding the right words to say to reassure her...she is loved....

gottabebetternow Fri 01-Jan-16 15:30:45

Yes, being virtually bedbound, and unable to sit in a wheelchair for more than a few minutes, is one of the issues.

She feels trapped physically and mentally.

Sadly visits are limited to an average every 2 weeks as the journey is exhausting for me now, although I do call daily and we talk about everything under the sun, which stimulates her.

Another sister lives an equal distance visits maybe every 3/4 weeks.

It's just so hard leaving her lying in her bed, knowing we won't see each other for a long time.
Witnessing her loneliness is devastating.
I would love to bring her home, but realistically know I couldn't offer the high level of nursing care she needs.

Penfold007 Fri 01-Jan-16 15:37:41

OP I apologise I hadn't realised how disabling her medical condition is. I'm glad the nursing home staff are caring and supportive.

I can understand how having to come to term with the fact that this is going to be her final home must be very difficult for both of you.

Will you be able to be involved in the clearance of her flat and able to bring her a few reminders from her life?

MatildaTheCat Fri 01-Jan-16 16:02:21

OP, it sounds like quite a positive thing that she can and does verbalise her distress, though awful for you. Has she been assessed in a pain clinic to check her pain relief is optimal? And has she been assessed for depression because it's very common in the elderly and often overlooked.

Is she joining in with activities at her home? Ours has started a book club which mil enjoys. Maybe a local volunteer could read to her weekly? You mentioned an iPad...if she can text she might well be able to use one and if she has wifi you could FaceTime or Skype. She will probably be negative about this but I've learned that sometimes I need to go ahead and try things anyway. Do you have children or grandchildren who might call her as well? Cruel as it is she will appreciate that more than your calls as a novelty.

Horrible situation for you all. I hope my brothers will be as kind to me in later life not a chance.

Levantine Fri 01-Jan-16 17:00:05

I'm so sorry, this sounds very hard. I wish I had some concrete advice for you, but just wanted to offer some support

gottabebetternow Fri 01-Jan-16 17:14:46

yes, this was the very first time she has verbalised her distress to me, (through many years of serious illness)and it came as a shock, though I understood why she exploded after the reality after so long, that she would never be going home again.

If she asked me to, I would certainly collect her possessions once a date was set for the flat to be cleared.

As she is bedbound, apart from the occasional 10 minute wheelchair access to the dining room, when she is strong enough, she can't join in activities.
Although having said that, most are bedbound in a similar way.

So, it's mainly the tv/books/and resting that is her day.

I feel like I am having a tantrum...wanting something that I can't have...which is, I want kind visitors for her, who will engage in everyday conversation, make her smile!
She is so happy/smiling/laughing when I am there.

N3wYear2016 Fri 01-Jan-16 18:38:40

I think that your sister realising the truth at an early stage is better (I have known some families who have not been so truthful due to slightly different circumstances, but who have had relatives in care)

I can understand her frustration

I can understand your frustration

You want the best for her

Perhaps you can contact a church or charity who can provide a befriending service who can visit in person once a week ? (usually CRB checked)

Some charities offer regular befriending over the phone

There are lovely people out there if you can find them (perhaps someone who has previously volunteered at a hospice)

Fannini Fri 01-Jan-16 18:51:42

Age Uk offer a befriending service and a telephone befriending service, maybe you could check out their website for more details. I'm really sorry for you both, you do sound like a lovely sister though and I'm sure she cherishes your phone calls, and understands that it is difficult for you to visit more often. Only human for you both to feel frustration / strong emotions and nothing wrong with a bit of a vent IMO. Hope you find some help.

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