Feeling frustrated

[DMac]

Hi,

I look after my cognitively-impaired mum-in-law and dad-in-law (77 and 82). I'm fairly new to my caring role, and just need to offload a bit, as I'm feeling frustrated today. Having spent an intense 3 months or so arranging as much as I can for them, lately I seem to have come to a hiatus.

Earlier this week, I attended a local carers' help group. It was really useful to hear from people who have trodden this path before me. I was given lots of good advice, but I also heard myself responding to a lot of the advice with "I've sent in the form/ request (whatever), it's in the pipeline, I'm waiting to hear"! This sums up where I'm at right now, and I can't help feeling that I'm missing something, or there is someone I should be chasing up!

Right now, the things "in the pipeline" are:
* MIL's appointment with the local psychiatric hospital, to get a formal diagnosis - she already gets Donezepil via a private diagnosis, but we feel we need an NHS diagnosis, to access the support she needs
* Attendance allowance claims for both of them
* Carer's allowance for me
* Decision from DVLA about MIL's driving - meanwhile her car is sitting disabled in her driveway
* Social Services care assessment for MIL and for me. They did visit DIL recently, but as they are self-funding, SS don't seem to be interested, and they didn't send a care plan or anything like that for my DIL. They did, however, make a referral to Occupational Therapy for him - another appointment "in the pipeline".

Also, recently I changed DIL's carers, as they weren't cleaning him properly in his catheter site. This was discovered by the district nurses, following a routine catheter change (this happens every 3 months). I phoned the DN to ask if they would be willing to do an interim check, to see if the new carers are doing a better job? But they said no, they would only respond if he was showing signs of an actual infection. So I'm wondering, where is the quality control over carers?

I'm also feeling frustrated with my siblings-in-law. This evening, we have a family meeting with my husband's 3 siblings. My sister-in-law does a sterling job for DIL's night time care. My 2 BILs are also involved to some extent, but live some distance away, so don't see the issues my SIL and I see more closely. I sometimes feel that the 2 BILs don't appreciate how difficult life is for MIL and DIL nowadays. I visit them roughly every other day with dinner/ shopping or whatever, run errands for them, and take them to appointments or whatever is needed.(I'd go mad if I was with them every day!), so I see more of the daily mishaps. I worry now that my visits, though regular, are not enough. They are both so very vulnerable in so many ways. MIL doesn't understand money any more, so my husband (who has POA) gives her small amounts of cash to spend in local shops. MIL doesn't cook any more, but she sometimes tries to, and I see her switching on the hob and then placing her hands near the hot plate and I just shudder....so I'm wondering if now is the time to make plans for a live-in carer for them both? (Not sure they are ready for a care home yet.) I know that there will be some resistance to this idea from the siblings, not least because of financial considerations. But I also think they don't really want to admit that MIL has deteriorated so much. Even my SIL, who does see them every day, seems determined to persevere with 'training' MIL to cook pre-prepared meals in the microwave. These meals need to be cooked from frozen, but MIL cannot read the instructions and will defrost them first. She then complains that the vegetables are not nice.

Sorry, I've ranted on a lot here. I'm not sure what response I'd like to hear (!), but I'm sure there must be someone out there who has felt as I'm feeling today. I would love to hear your thoughts.

Thank you for reading this.

 

[AndreaP]

It is so difficult when people disagree As if dealing with dementia isn't bad enough things are made harder when family members disagree. My brother and I were like this. I remember when 3 months ago the CH rang to say they would have a place shortly for our mum. He was not pleased and sided with mum that she should stay at home. What I think he was mad about was that mum would have to be told she was going and he did not want to deal with the fall out.

So it was left to me to do the hard stuff. Now she's there he believes it was the right move - he welcomes not having to do so much.

Off the subject really but everyone thinks they know best, that's my point. I think those doing the day to day stuff should be the ones who get the final say. And I think money is a big factor with a lot of people, my brother included. Preserving the status quo is often favoured because it's easier to do nothing than implement change when it might well meet with resistance.

 

[DMac]

It is so difficult when people disagree As if dealing with dementia isn't bad enough things are made harder when family members disagree. My brother and I were like this. I remember when 3 months ago the CH rang to say they would have a place shortly for our mum. He was not pleased and sided with mum that she should stay at home. What I think he was mad about was that mum would have to be told she was going and he did not want to deal with the fall out.

So it was left to me to do the hard stuff. Now she's there he believes it was the right move - he welcomes not having to do so much.

Off the subject really but everyone thinks they know best, that's my point. I think those doing the day to day stuff should be the ones who get the final say. And I think money is a big factor with a lot of people, my brother included. Preserving the status quo is often favoured because it's easier to do nothing than implement change when it might well meet with resistance.

You are so right, Andrea. It is the resistance and denial that make this damn illness so difficult to deal with. Not just from siblings, but from MIL as well... though I get that her 'denial' is in fact an inability to think logically any more...."If I don't take a driving assessment, no-one will find out that my driving isn't up to scratch, so I can carry on driving"

You are also right about money being a big factor. One of my BILs, who is "CONSIDERABLY richer than YOW" (!), would be horrified at the very idea of scrimping in any other area of his or his family's life. And yet I know he will resist any plan that involves paying for his parents' care, because subconsciously, he's aware it will reduce his potential inheritance pot. Sad to say it, but there it is. I can say it here, but I wouldn't dare say it to his face.

I know it's an issue with him because some time ago, his wife attempted to hide MIL and DIL's assets, in a vain attempt to qualify for financial assistance. I won't go into details, but suffice to say that my husband thankfully put a stop to all of that. I'm trying to put this unpleasantness behind me, and I try to be civil to him and his wife. But it's fair to say that there is not much love lost, especially between his wife and me, and we hardly speak to each other these days.

One thing this dementia business does for sure, it tests the strength of relationships. I just hope we all get through this without falling out with each other any more, because we need each other more than ever now. I'm very mindful of this, and try to be fair and factual with my siblings-in-law. But I'm only human, with my own set of values and beliefs, and won't stand by if I think someone is acting immorally (regarding financial 'manipulations') or irresponsibly (ignoring MIL and DIL's needs). Like you say Andrea, those who are closest should have the last say. As an in-law, I feel I can only advise, but thankfully I have the ear of my husband, the eldest of the clan (and one of 2 with PoA).

Wish me luck with tonight's meeting!

 

[Regina64]

You are doing a fantastic job

Hi DMac,
You are doing a fantastic job. Organizing all the official things, looking after them, getting the rest of the family involved. Attending carer'e group.. you are doing all the right things.
But still it is hard. I care only for one person. And I think doing all those things it the least problem.
The biggest issue for me is frustration, being alone in the actual care situation, feeling caged.
Ranting out to someone is in itself helpful.
Contacting a forum is even better, because you might get answers from people who know what you are talking about.
I am sorry that I have no great advice for you. But I know the frustration and the in-law family feeling.
Wishing you lots of strength.

 

[DMac]

Hi DMac,
You are doing a fantastic job. Organizing all the official things, looking after them, getting the rest of the family involved. Attending carer'e group.. you are doing all the right things.
But still it is hard. I care only for one person. And I think doing all those things it the least problem.
The biggest issue for me is frustration, being alone in the actual care situation, feeling caged.
Ranting out to someone is in itself helpful.
Contacting a forum is even better, because you might get answers from people who know what you are talking about.
I am sorry that I have no great advice for you. But I know the frustration and the in-law family feeling.
Wishing you lots of strength.

Thank you Regina64, it does help to hear I'm doing the right things...and yes, ranting does help a bit!

I hope you find someone to turn to as well. I've read your other post, and your situation sounds intolerable to me. Please, do speak to your GP. You should not have to put up with what appears to be bullying behaviour from your MIL, although in her mind, she may be acting perfectly rationally.

Take care. xxx

 

[canary]

I think that sorting out the paperwork and dealing with officialdom is the hardest bit and is certainly extremely frustrating. I agree, you are doing all the right things and sorting things like AA, Carers Allowance and DVLA will come to an end.
xx

 

[AndreaP]

Yep Dmac you hit the nail on the head. With my brother it was all about the inheritance. He likes the fact that mum is no longer a responsibility but hates that it costs so much to keep her there. Calls them thieving b****** because there will be less for him when the estate is wound up.

Beggars belief doesn't it? He has plenty of money himself which he never spends mind you.

 

[DMac]

Progress!

I think that sorting out the paperwork and dealing with officialdom is the hardest bit and is certainly extremely frustrating. I agree, you are doing all the right things and sorting things like AA, Carers Allowance and DVLA will come to an end.
xx

Well what a difference a week makes....suddenly, the logjam has shifted. First DIL's AA was approved. Then my claim for carers' allowance was approved. Then we had a visit from a council inspector and received assurance that their claim for council tax band reduction due to change of living arrangements (DIL is physically disabled as well) is going to be approved.

All on the same day!

The only fly in the ointment is that, after a 6 week wait, the DVLA wrote to say that they have writen to MIL's GP about her fitness to drive... and expect to get a reply within 6 weeks. 6 MORE WEEKS!!!

BUT it gets better.... today, we found out MIL's AA claim has also been approved. AND her appointment with the local mental health clinic has FINALLY come through. As if that wasn't enough, DIL announced today that he wants to sell the car, as there is no point it sitting there on the drive if no-one was going to use it. MIL's reaction was priceless... she just said, "Well, he seems to have made up his mind, so that's that then." Bless her, I do believe that after nearly 2 months since her car was 'broken' (i.e. disabled by me), she has forgotten how much she needed her car for those essential trips to the doctor, to the shops, to visit her brother some 20 miles away, all those essential journeys she was making So, after weeks of agonising how best to tell her to stop driving, she just.....gives up.....

All on the same day!

On balance, today was a good day!

 

[canary]

Oh wow, a very good day, Id say

Get on and sell the car PDQ before she changes her mind

 

[DMac]

Car now being sold!

Oh wow, a very good day, Id say

Get on and sell the car PDQ before she changes her mind

Thank you Canary - I'm pleased to report that my brother-in-law drove the car away last night. He has found a buyer already, and the whole deal should be completed by the end of the week!

Now that's a result!

 

[DMac]

Conflict with siblings over care arrangements

I worry now that my visits, though regular, are not enough. They are both so very vulnerable in so many ways.

My worries were magnified today. In the interests of doing some advance research, I visited 2 care homes today. The CH managers BOTH said to me, when I described current caring arrangements, that these are inadequate. INADEQUATE! Both said that they should be getting 4x preferably agency visits per day, minimum, to ensure they are both eating, drinking, and DIL in particular is being kept clean after toilet visits. Also, no-one knows what happens in the night-time.

I have sent an e-mail to my siblings-in-law, to relay the concerns raised by the CH manager, as they were put to me. My sister-in-law has replied, and is dead set against changing current arrangements. This in spite of the fact that it is just HER doing the nighttime routine, and there is risk of no cover if she is ill. One BIL's wife has previously openly criticised me for over-caring, saying that my MIL and DIL must be the most pampered pensioners in our county. So my latest e-mail outburst will probably be treated with the contempt it deserves and I probably won't get a reply. Well, if cleaning poo away is pampering, then maybe she has a point.

I think our current arrangements are too fragile and leave too many gaps during the day. But I would be interested to know what TPers think. Should I continue my efforts to persuade siblings-in-law to install more (agency) care for them? Or should I step away now, and wait for the inevitable crisis to happen?

 

[canary]

IMO, I dont think your brothers and their wives have any idea what is involved, so I would ignore them.
I would suggest that you get hold of Adult Services (formally SS) for a needs assessment. They are unlikely to suggest anything more than carers in 4 times a day, TBH, and you may feel that you need more (no night-time cover etc), but perhaps having someone official saying this will give you more clout and you can use it as a basis for getting more help.

 

[Kevinl]

I'm with canary, get an assessment done then when it's in black on white on a government letterhead they may go along with the extra visits.
I don't know if they'll be self funding for the extra visits, if so it may be the other siblings just want to "preserve their inheritance" and spend as little as possible on care and let you and the rest of the hands on team do it for free, other explanations are available, I just can't think what they are
K

 

[DMac]

I'm with canary, get an assessment done then when it's in black on white on a government letterhead they may go along with the extra visits.
I don't know if they'll be self funding for the extra visits, if so it may be the other siblings just want to "preserve their inheritance" and spend as little as possible on care and let you and the rest of the hands on team do it for free, other explanations are available, I just can't think what they are
K

Thank you Canary and Kevinl. I did try to get an assessment of their needs and mine from SS. This was about 3 months ago now. I have been up-front and explained that my in-laws are self-funding, and here is where I think the difficulty lies. I requested help through the SS central number, and also the locality team which my DIL had been under before. When I chased the locality team, they used words which, in effect, meant "You're self funding, you're on your own, go ahead and make your own arrangements". So far, neither MIL nor I have received an assessment.

DIL, however, did receive a visit from SS. I think this is because he was on their radar following his op for bowel cancer nearly 2 years ago. At that point, SS could not do enough for him. He came out of hospital with a 6 week reablement package in place. It was as a result of this that we came to his present caring arrangements. The very nice SW asked us a few questions, made a referral to OT for additional aids for DIL, and spoke to my SIL. Here is where I think things have gone awry. The SW was HIGHLY COMPLIMENTARY about our caring family and the arrangements we have in place. My SIL has taken this to mean that everything is in place as it should be. And why not - they are the care professionals after all, not my SIL! The SW did say to me that they would probably 'sign off' my DIL again (as they did some 6 months after his bowel cancer op). We did not receive a revised care plan for DIL. So that seems to be that, then.

Re: your comment about "preserving inheritance", I do believe there is a subconscious element of this underpinning my SIL's thinking. I also think one of my BILs and his wife are overly influenced by this, as the wife tried at one time to 'hide' their share portfolio . in an attempt to get financial support from SS. Thankfully, my husband stopped all that. This is the same wife, incidentally, who patronises me with her views on my "over" caring. This same BIL also thinks he knows all the answers about financial planning, because he has a high-flying job in a financial company, so thinks that contacting a specialist financial adviser would be a waste of time.

Siblings, eh?

 

[Pickles53]

Thank you Canary and Kevinl. I did try to get an assessment of their needs and mine from SS. This was about 3 months ago now. I have been up-front and explained that my in-laws are self-funding, and here is where I think the difficulty lies. I requested help through the SS central number, and also the locality team which my DIL had been under before. When I chased the locality team, they used words which, in effect, meant "You're self funding, you're on your own, go ahead and make your own arrangements". So far, neither MIL nor I have received an assessment.
:

I got that kind of response just over a year ago, but I thought that the new Care Act makes it mandatory that SS must provide an assessment of needs? Also the arrangements you had may have been fine at the time, but as circumstances change then care plans and support need to change too.

 

[DMac]

I got that kind of response just over a year ago, but I thought that the new Care Act makes it mandatory that SS must provide an assessment of needs? Also the arrangements you had may have been fine at the time, but as circumstances change then care plans and support need to change too.

I think you are right, Pickles. The key seems to be aware of changes and report these to Adult Social Care. Should there be a next time I contact them, I will be sure not to cover up the coping and managing that has been going on. They say, don't they, that a managed need is still a need? Also, from reading other posts on this forum, I'm now aware of the need to stress that these are vulnerable adults.

In the meantime, the siblings will be meeting soon to discuss whether/ how to increase the care package. I will put my views forward, but as I'm only an in-law, I feel I can only advise. It's up to them to make the decisions.

Thank you for your comments.