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End of life : Caring at home

My husband has stage 4 lung cancer and there are not more treatment options available to him. He was discharged a week ago from our local Hospice where he was treated for a chest infection. He can't walk , barely stand and is very breathless . He was discharged with a full package of care , a hospital bed, commode, wheelchair etc which is all set up in our living room. As he qualified for fast track Continuing Health Care , we also have 2 carers coming in 3 times a day. To be honest they wash him in the morning and then go.. I can't think of anything else they can do to help and in many ways are a disruption if he is sleeping etc . Our home doesn't have a downstairs cloakroom so I am up and down with bottles/ bed pans to the bathroom . I have had 2 knee replacements and am waiting a hip replacement so this is not that easy. I am sleeping on the sofa because I am concerned about leaving him alone during the night. In addition he takes 32 tablets a day ..I sort them out ...but feel concerned about making a mistake . I worry that he's not safe to be honest. The Hospice said we would have "quality time" at home but that's definitely not the case. I understand ( although we were never told this ) that my husband could go into a Nursing home for the duration of his life using the care funding he has been given . Once, I would have thought this was a terrible idea , but now I'm wondering if this would be a better solution . He would be safe and well cared for and I could spend my days with him ( as I did at the Hospice) ..maybe then we would have some "quality time" I am on my own with no other family support . I would be grateful for any advice from someone who has been in a similar situation . Thank you for reading x

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Hi alice111,

Your post is very thought-provoking and I can see that you are having a very tough time and feeling overwhelmed at this new regime of care at home with your very sick husband.

There's no one right or wrong way, or right or wrong decision. The one that works best for both of you will be the right one.

I'd say don't do anything too hasty. Give yourself at least a short period of time to let your new circumstances become a real routine, and to give yourself time to tweak it, if you can, so that it works a little better for you, but then decide whether you are physically and mentally able to cope with it. With regard to worries with your husband's medication, this shouldn't be your worry alone and you should engage with his health professionals to find a better way of administering such a complicated drug regime. Pre-dispensed sets of medication are possible.

If it's too much of a burden, then of course it's not wrong to consider a residential nursing home, but as secrets22's post yesterday points out, the seriously ill do tend to do better at home when it's possible.

On the other hand you have to consider your own health and well-being, physically and mentally. Not being able to cope won't help your husband either.

So, not an easy or simple position to be in.

I think I'd say talk to your husband about the whole situation now, so there are no nasty last minute surprises for him if you decide on the nursing home route.

Whatever you ultimately decide, my thoughts are with you. It's such a tough time for you both and I send you both my very best wishes.

Do please let us know how it all pans out.

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Hi Callendersgal,

Thank you for all your good advice. At the end of the day, my husband's wishes will be paramount and if wants to stay at home that's what we will do. I'm sure you are right in that it's early days , I'm very tired and a bit overwhelmed by it all . I will give the situation some time to settle down a bit . I might see what Nursing homes are available who can take palliative care clients ...if there is nothing local, the decision may well be made for us .. x

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After such a lovely reply from Callendersgal, I just want to send hugs and love to you. What a sad situation to find yourself in and I hope you find the right solution for you both. Thinking of you. Xxxx

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Hello Alice, I second everything that Callendersgal has said in her caring post to you.

There is more help out there for you and please don't do anything hasty. It does take time to adjust to this new and difficult situation, not only the physical side to this but also to the emotional toll on you and he, knowing what the outcome will be.

The local Pharmacist can also help by providing his medication where possible in a 'dosset' box. Also if the Hospice nurse or District Nurse visits ask if they can draw up a medication chart that you can follow, which will help to alleviate some of your anxiety.

Ask your health professionals' for more support not only physical help but emotional support too. Don't be afraid to ask your GP and local hospice for more information.

There are Marie Currie nurses and Macmillan nurses who can attend at night to occasionally enable you to go to bed as normal knowing that he is well cared for.

Are there any of our members who can give more information to Alice please?

Please keep posting on here and let us know how you are both getting on.

Our thoughts are with you both at this difficult time.

MAS Nurse and Moderator.

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Thank you for the information and advice which is very welcome. I do feel a bit "out on a limb"...I do think we need more support for my husband to stay at home , especially as the situation will inevitably get worse. One thing that I think about is that the professionals all seem to want him to die at home ( anything to avoid a hospital admission it seems) but funnily enough, neither of us want that to happen .

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As he has been in the hospice they should have referred you to the district nurse, McMillan nurse and the Marie Curie nurses. You need this support so please ask for it and talk through your concerns. The Marie Curie nurses can provide night sitting so you can go to bed.

Having said this, it really sounds as if you are struggling with this and are frightened. If you really feel that you are not equal to the task then you can ask for him to be transferred back to the hospice or a nursing home. You shouldn’t be expected to continue with caring if you cannot manage.

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Thank you for your help Bella395, I wish I did feel more equal to the task . I really want him to be safe , clean and as happy as he can be . He's a very good patient so I am lucky in that respect . I just wish I was a better nurse x

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Hello,

As a nurse in a nursing home, I would like to reply to your situation. I would also like to respond to it as having been a former community nurse so I have first hand experience of going into many homes to see patients such as your husband and also to see the stress caused by such illnesses.

Firstly, I think it is quite unbelievable how you say you were not told about your husband being discharged from a hospice to a nursing home, in the first instance, despite funding being approved. It is a fallacy that people always want to go home for care and one that I come across regularly in my profession. The stress it puts on couples is immense and often not one which should be associated with a home environment because our homes are simply not built as places for medical care. Unless you are in a new build as I am which is built for more care at home. I do not always advocate for nursing and care at home because it clearly does not suit a lot of people, yourself included and is done as a money-saving tactic unless it has been specifically requested from either the patient or their relative(s). So, in your case, as long as you or your husband did not specifically say this, it should not have been assumed and the nursing home option should have been suggested. But, as your husband has been sent home under the above assumption and for the remainder of his life, I think, medically, it may be too late to move him (again) and I would err on caution in doing this. Furthermore, as he is quite advanced in his disease, he is not really a suitable candidate now for a nursing home although most would still take him in. I believe this should have been robustly discussed with you, but I guess that horse has now bolted and we are where we are.

I also do not understand how anybody is discharged from a hospice under 32 daily tablets! Of what benefit are these 32 tablets to someone with such a diagnosis? There is no room for improvement medically whatsoever, so what is the purpose of this, pharmacologically? This is simply unbelievable and one which I criticise doctors for upon discharge from the hospice. However, the pharmacy would be able to bubble pack them for your ease and safety unless there is liquid medication but at least some of the medication risk can be removed from you. So, something can be done about that immediately and you will need to contact the GP or oncologist to get this requested without delay.

Regarding the carers, they will be concerned for him as he will be a very weak man at present and they will want to do the minimum so as not to disturb him. Their purpose will be to provide toilet transfers and/or personal hygiene and I would make use of this for those reasons. I know we can't rely on clockwork dictation for going to the toilet, but when you are more in a routine with them and yourself, you may find that they help more than hinder. Remember, you are perfectly within your rights to ask them not to do something if he is asleep. That being said, I am not surprised he is asleep a) due to his disease b) being on 32 tablets which are bound to have very sedative effects and c) the fact that he will be weakening more and more each day. Keep with them though because it will take pressure off you at present, even if they are visits whereby you do not allow anything to happen because it is not needed at the time.

This is a very trying and psychologically draining time to be in and my thoughts are with you, as a nurse and as a carer myself to my physically disabled and severely cognitively impaired husband who had a car accident which caused a stroke. Like you, I have no family involvement at all. In my case, they choose the easy route of turning their backs so the disability does not mess up their own lives. Not sure if this is why you are alone in your position, but you're not alone on here and we are thinking of you and will help on this portal in any way we can. I have had really good response here in the past so stay with us and we'll help you through.

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When my husband desperately wanted to come home from hospital to die at home there was no doubt about what he wanted and that is what we did inspite of the hospital being very emphatice that it would be too much for me..What does your husband really want.? Uncertainty makes everything more difficult. The right thing is what you and he want bot what other people think you ought to want

We had no funding because MSA is always hard to get funding for. I paid for carers to come in pairs 4 times a day to hoist him in and out of bed so he could watch the Test Match, feed him and bath him. Also to keep the bedsores at bay by changing his position as he could not move himself

If they could do nothing, for instance when he was too ill to eat or asleep they used to clean the house and do the washing while I had some time to go out into the garden with a cuppa for a short respite. They were lovely and of course I was paying for them so they wated to help in anyway they could. See if there is anything else they can do to help.

FredaE

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Alice111,

I can sympathise with you in this difficult situation.

I’ve been there too when my husband had Stage 4 stomach cancer. I was very ill at the time my husband became ill and had been living in the lounge on a hospital bed for a year. At the time I was having private carers a few times a day, then I was able to do more things myself and we terminated the contract. My husband was admitted to hospital for a few times for various procedures but it was then suggested that he was moved to a hospice, my daughter had moved back home from London and was allowed to work from home, she suggested we have him home till the end.

After my husband came out of hospital we had carers in the house, but it was always difficult with timings etc. when people are so ill and quite often are asleep.

You need to look after both your husband and yourself, our house was geared up for mobility issues for me, so we just needed a hospital bed again in the lounge. My daughter helped administer the drugs but this is something that can be added to a care plan and the pharmacy can make up packs for you. Marie Curie and MacMillan can help too if you need some help too. We had a visit from Macmillan to assess my husband but sadly he passed away within 2 weeks of him coming home. My daughter and I were pleased that he was in his own home to end his days. It was also easier for us not having to visit the hospital which I found very tiring.

Don’t make any rash decisions cos you may make the wrong ones. It is very difficult having care with people in your house all the time. You can try and see if there are any residential nursing homes for palliative care but leave it on the back burner in case the home care doesn’t work, the carers May be able to do a few more things to make life a little bit easier.

Callendarsgal and MAS_Nurse have come up with some great suggestions.

Best wishes to you and your husband.

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Dear Alice, I respectfully reply that you have answered your questions yourself. I'm not a qualified nurse or similar but it would seem to me that using the Hospice would enable you both , to have the chance of better quality of life. As you stated you could continue to spend time with husband and some of the worry would be lifted from your shoulders.

Good luck and I hope whatever decision you make,will be the best for both of you. Do please keep in touch. Sending much love to you both in these difficult times.

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Alice I do hope things improve for you, your story is so sad. Please take note of some of the wonderful replies on this site x

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Hello Alice, it is quite a long time since I cared for my terminally ill husband , he was sent home with minimal care because his daughter was a nurse. I broke my upper arm and sadly he had to go back into hospital to protect my health. If you could get a nursing home place , please do not feel it is wrong if that is best for you and your husband take the offer. My Husband never made it to a nursing home he died the day before in an hospital ward. Every best wish what ever course you take, it is not easy to watch your loved one struggle and not be able to help.

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Dear Alice. Apologies for posting such a while after you originally told us about your sad situation. Being a carer is a very hard thing to do and extremely tiring, even at my age of 59! The comments everyone has made are all so helpful, and I am sure you will take comfort from the fact that you have so many who understand and are there to offer support. I care for my mom who is coming towards the end of her life, and I feel sad that I am no longer able to 'make things better', but am only able to make her comfy. It is intrusive having people in your home (I have 17 hours help per week), but you can ask to alter the care plan so they can assist you with other chores so you get a bit of respite yourself. I would definitely recommend Marie Curie or MacMillan to see if they could sit with your hubby through the night occasionally so you can get a good night's sleep. I am very lucky as mom sleeps most of the time, and have had never had any issues through the night. Thinking of you both and wishing you all the best.

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What a tough time. It's so complex, as others have said there is no right answer but just what is the best for you and your husband. I do feel that you need to take care of yourself first in order to care for your husband. All the best with your decision-making. xx

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You have to consider what is also best for your health to Listen to what your heart is telling you There would be trained staff on hand Your husband would receive round the clock care with trained staff if a emergency situation occured It's always hard to make such a big decision but your health sounds like it may be suffering to not only physically but mentally to With all the stress and worry you must be having One can only do as much as they are able and your husband will know you want to care for him at this time to make him as comfortable and pain free as possible He would not I think like to see you Ill also and knows you are doing what is best for him

My thoughts are with you at this time

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Thank you so much to all of you who have replied to my post . I really value the great advice offered . I would like to go through each response and reply individually...every one has really helped me . At the moment I am so tired that I'm not functioning that well so please bear with me. I have been offered 3 hours a week respite by the local hospice and I think I will use it by going to bed!! I am still in a dilemma because I am not convinced that I have all the skills to nurse my husband properly on my own ...I fear his health getting worse and him being in pain and not being able to get him the right care . I can see his discomfort increase daily ...I do think that at least in a Nursing Home he would benefit from 24 hour care ...but on the other hand I don't want him to feel betrayed . xxx

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Of course you don't have the skills to be nursing him and you shouldn't be doing this on your own. I can't get any clear idea from your posts about who is involved in his care at home but I am putting that down to your tiredness.

I find it difficult to believe that the hospice staff have not referred your husband to the district nursing service, McMillan and Marie Curie nurses. They should also have referred for Continuing Care funding so that he can have nursing care in his own home. I just don't understand why all this is not in place. If you have been left with so little support then quite frankly I think it is appalling. You say that the hospice has offered 3 hours a week respite care - is this in your own home?

The only thing I can say is that you will need to find the strength to tell the hospice staff that you are not coping and that you need to hand this situation over to them. If you cannot do this then perhaps you should ask a family member or friend to deal with it on your behalf.

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Hello again alice111

I just wanted to add, after reading your latest response, that you clearly love your husband very much, and where there is love, there is no sense of betrayal. If you ultimately decide on the nursing home route, your husband won't have a sense of abandonment. You are a partnership and I'm sure he loves and cares for you equally and would only want you to bear what you can.

I think it would be a wonderful idea to just rest during your short periods of respite and don't hold back from your husband all that you are thinking and feeling.

Very best wishes, once again.

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