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Coping with a loved one's progressive condition - Carers UK Forum

Coping with a loved one's progressive condition

Share information, support and advice on all aspects of caring.
Hi everyone.
Thanks for taking the time to read this. I'm an only child living about 70 miles away from my parents who are in their mid 60s. They are socially isolated (no family nearby, and no friends to speak of). They have carers coming in twice a day, which I insisted on even though they hate it.

Sadly, my mother had a fall about 4 years ago and has suffered numerous health problems since then. She is generally doing ok, but no longer has the stamina she once had and still has relatively frequent hospital visits.

My Dad was recently diagnosed with a progressive neurological condition. He has had problems with his walking for 3 or 4 years, but they thought a double knee replacement would solve this issue. Sadly it hasn't, and since about February this year he has rapidly deteriorated to the point he can hardly walk at all. We are all finding it difficult to accept - we are a very close family of 3 and despite not living close by, I am home every weekend and do what I can to help. My Dad doesn't leave the house now unless I am home to take him out in a wheelchair (which he hates).

I am really struggling and find myself getting angry and shouting at my Dad when he doesn't use a frame when walking (he is having regular falls now), which I know is so wrong, but I just can't control my sadness/anger/frustration.

I know I need to be strong for my parents, but I just feel like such a failure. I've always read people are meant to troop on regardless and are almost praised for it. But in this case, I'm realising that my Dad isn't going to get better. In fact, he is going to get a lot worse and there is nothing we can do to stop it. My Dad had always been so strong and independent, and he is obviously really struggling with how quickly things have changed.

There are actually times when I've felt like it would be easier for me to die than witness someone I love so much going through this and deteriorating. I know that's a selfish and horrible thing to even think, but I'm being truthful.

I guess my question is - how do you even begin to carry on with life and take joy in it when you see someone declining? I want to be the best support I can for my parents, but it's so hard. I have tried speaking to a counsellor but she just said I need to take time for myself, which I didn't find very helpful. I would be so grateful for any advice. Thank you for reading.
Hi Nadia,

It is, as you say, very difficult to watch a much loved relative or partner struggle, and I'm sure I don't know what the answer is; I too get angry with my mum/life/the world.

I think that's part of the reason that caring is so difficult - it can be a strain physically, but I find lately that mentally it's just as hard.
I guess I would say that whilst inside, I don't cope, on the outside I try to do my best, which is all anyone can do.
I'm hoping that members may post with tips and hints, but suspect that lots of us will feel much the same as you are currently feeling..
Take care x
Perhaps you can console yourself with the fact that at least your dad was able to live long enough to have a life. My 31 year old son is stuck in Intensive care after having a tracheostomy and he also has the progrrssive muscle wasting condition DMD - a muscle wasting condition for which there is no treatment and no cure and is fatal. He has lost countless friends over the years some of them not even reaching their twenties. Basically how we cope is we have two choices - we get on with it or we give up. Giving up helps no one, especially the one with the progressive terminal condition (my own condition is also progressive - I have the same condition as my son which is acting more slowly on me than on him.) You live day by day and you don't think about the future. If you find yourself doing so STOP! It doesn't help. The way we look at it is once our son is gone then we will deal with all the mental health stuff until then its stuffed into a drum with a tight lid and its never opened! You cope because you have to.

Eun
Hi Nadia, welcome. You used the words about "trooping on regardless". I believe these words are used by non carers, because the more you troop on the more it justifies them doing less, or nothing. Trooping on is not the answer I'm afraid. I've had TEN different relatives who needed substantial care in the last 40 years. From my (often bitter) experiences, I'd say stop trying to be Superwoman, and start yelling for help. Have they both had an assessment from Social Services, have you had a Carers Assessment? If they refuse, that's up to them. In fact, everything is up to THEM, not you, to sort out. If they choose not to have assessments or they refuse the help they are offered, that is up to them. We are all responsible for our own happiness. They would probably like you to give up everything, move in with them, and care for them 24/7 until they both die. Do NOT under any circumstances move in with them.
I was told years ago, when my son's disabilities were first apparent, to "toughen up". You need to do the same. On your own you will never be able to meet their needs. Don't even try. Think of your role now as being Care Organiser, not provider.
Help them find out what benefits they are eligible for, show them how to shop online, make sure they have occupational therapy assessments, all the aids and adaptations they need, but don't get involved with hands on care.
Is their home suitable for a wheel chair user? If not, they can either move or have the home adapted. If you felt able to share what the nature of his illness is, there might be others who are also caring for someone with the same complaint.
Finally, get cross with the illness, not the person. Just make sure dad knows that if he falls and breaks a leg, and has to move into a home, that's HIS responsibility. The choice is his. If he falls, always make sure an ambulance is called. This will alert the GP that something is going downhill.
I had counselling after 3 parents died in quick succession and the remaining parent, my mum, was going downhill fast. I was told to stop being so hard on myself. To be really pleased that I was around to give the care I could (mum lived alone and had carers going in 3 times a day) so I did what they didn't. Always jobs waiting for me! Most of all, I was told that it was OK to say "No" to anything I didn't want to do. I wasn't a biddable little girl any more, I was a disabled 60 year old with a son with severe learning difficulties! This really helped me. The counsellor helped me set my priorities. My son had to come first. Mum second.
I hope hearing about my experiences have helped in some way. Come back to the forum as often as you want, we are here to support each other.
I guess my question is - how do you even begin to carry on with life and take joy in it when you see someone declining?
Hi Nadia
I echo BBs sound advice about building a role as Care Cordinator and then yes you can actually get at least some joy. For example currently my 93 year old Mum is in a residential Home where all her practical needs are taken care of. This is a very different situation from a year ago where she was living alone, struggling and falling. Yes it's sad to see her decline but we have grown so much closer and after years of being very tight lipped and prim and proper she's opening up and we have a right giggle when I visit. I am enjoying this stage.
With your parents, who at mid 60 are relatively young, If you can get the right care in place, you too can get some quality time with them.
Ps some of that care can come from you, if you wish, but no one person could cope with one caree 24/7 let alone 2.
Pps it's ok to be angry at dads disease and at mums frailty but try to be angry at the cause, not the person
Xx MrsA
Hi Nadia
You must accept that none of this is your fault , neither can you fix it for your parents. I am their age (maybe a little older) and I don't like not being as young and fit as I used to be either.
If Mum and Dad are still mentally quite capable then they have to face their own problems and do their best to co-operate with any help available without putting it all on you. Are the carers privately funded and are they sourced through Social Services? Even if your parents have enough money to be responsible for paying for their care, it's still a good idea to get Social services involved. SS open doors to people like Occupational Therapist who will provide lots of aids to help Dad. Grab rails, shower seats, toilet rails, ramps and so on. Do they both get Attendance Allowance?
You have recognised that the situation is only going to get worse. Quite right. But have they? Some future planning is needed here and you need to be realistic and look at your own future too. Can you see yourself moving back to their home and caring full time? Might be for a very long time indeed. Is that what you want? My Mum died 11 days ago. She would have been 100 years old today. No Sight, no mobility, hoists and wheelchair, carers many times a day and recently a nursing home. Long, hard road. It really doesn't help when people say how well you are doing. Not practically at any rate.
It's so, so easy to fall into the pit of 'I love them, I can't abandon them, I must give up everything to care for them' BUT do understand that you are giving up your own life to do that and it's very hard. It might come to that in the end but as they are yet relatively young please do look into alternative solutions.
AS BB says, organise their Care, help them find a way forward but think twice and twice again before you assume the burden of their complete care. That's not selfish -it's sense. They must help themselves too.
Please look into Power of Attorney. Important.
Elaine
Definitely put sorting out Power of Attorney at the top of your list. You can only grant a POA when you have mental capacity, otherwise going to the Court of Protection is a costly and lengthy business.
Hi Nadia
I definitely agree with the advice of getting power of attorney sorted.
Sadly I have had to go down the court of protection route. It definitely is costly and time consuming. Very intrusive and it's going to have added cost of £350 per year for the court to check I'm using the money in my husband's account to their satisfaction! We are not rich by any stretch of the imagination. I had no choice in this matter as my husband's dementia was very rapid.
I'm so sorry to hear of your situation.
Hi everyone, I would just like to say a huge thank you for all of the wonderful replies people have taken the time to write. I really appreciate people taking the time to help.

Someone made the point that my parents are responsible for their own lives and whilst that is true, I do feel that perhaps they unwittingly pin their happiness on me in the sense that they are always so happy to see me. They are both practically housebound and there are times when I feel that they are pretty much just waiting to die. That depresses me so much, especially as they are still relatively young. My partner's grandparents are in their 90s and more healthy/active.

I have discussed with them the prospect of me giving up my career and moving home but they both flat out refused. They have worked so hard to help me through my studies and are ridiculously proud of my career. If I lived closer it would be easier, but I'm 70 miles away. I come home every weekend, but when I'm not with them I feel In an almost constant state of anxiety that the phone is going to ring to say something bad has happened.

I know it sounds very bleak but right now all I can see ahead of me is months and years of watching them decline which is both devastating and terrifying. I desperately want to be strong for them, and be the best support I can, but at this moment in time (as selfish and awful as it sounds) it feels as though my own grief about the situation is preventing from really helping.
Eun wrote:Perhaps you can console yourself with the fact that at least your dad was able to live long enough to have a life. My 31 year old son is stuck in Intensive care after having a tracheostomy and he also has the progrrssive muscle wasting condition DMD - a muscle wasting condition for which there is no treatment and no cure and is fatal. He has lost countless friends over the years some of them not even reaching their twenties. Basically how we cope is we have two choices - we get on with it or we give up. Giving up helps no one, especially the one with the progressive terminal condition (my own condition is also progressive - I have the same condition as my son which is acting more slowly on me than on him.) You live day by day and you don't think about the future. If you find yourself doing so STOP! It doesn't help. The way we look at it is once our son is gone then we will deal with all the mental health stuff until then its stuffed into a drum with a tight lid and its never opened! You cope because you have to.

Eun
Eun - thanks for taking the time to respond and I am so sorry to hear about your son also your own condition. It sounds like you have a great outlook on what must be a really difficult situation for you and your family. I can only hope that I do somehow manage to cope as you are. I wish you and your family well x