Wits end

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1

Hi all, new to joining the forum but I have been lurking for a while.

The wife and myself care for her father and mother, mother has PD and was diagnosed 22 yrs ago.

To fill you in with the complete story, we bought a bungalow in 2010 and immediately built on a self contained granny annex for my inlaws. F-in-law was undoing going treatment for bowel cancer at the time and m-in-l was doing ok with only mild symptoms, and that's where it started to go pear shape.

M-in-l has gone down hill rapidly from there with dementia, incontinence, depression, anxiety and a general feeling of being unwell.

Neither of them have read anything on the condition, joined groups or taking the slightest interest as to what they can expect. If we try to help they tell us they're under the specialist at the hospital and he'll inform them if there's something they need to know, but at their consultations neither of them ask questions.

Every time there's a new condition they act totally mystified as to what could possibly be wrong, if we try to advice them we're looked at in a very dismissive way and are strongly told that there's an appointment booked with the doctor in 2 months they'll ask him..

It's heartbreaking to see them doing so badly but are too stubborn to accept help from anyone or anything, we're totally at our wits end to know how to help. F-in-l is convinced if outside agencies come in they'll whisk her off to a mental institution as they did in the 1920's and he cant be convinced otherwise.

We're all in a totally impossible situation and cant see wood for the trees.

2

You do seem to be having a very difficult time, Bowie ,and have my sympathy.

As your Parents- in-law seem to respond only to folk in authority I wonder if you could identify your nearest Parkinsons Nurse?

The helpline above will give you contact info.

If you ask her to visit your  home and pass it off as something the hospital arranges on behalf of the doctor, that will give you all a chance to look at more medical aspects and get advice and be introduced to the role of the PD support worker and local group.

As for the care side, you can ring Adult Social Services and ask for an assessment for the older 2 and an assessment for you and your wife as carers. In my experience, they respond politely and treat you with respect and kindness.

This will give you all an opportunity to find out about help with care that can be arranged, with support for you as carers.

Do be strong and locate the help that is out there.

You don't have to take all the burden yourself.

My boss in a previous life when I became very stressed and overworked said to me, " I can't help you if you don't come to me and tell me what the problems are!"

Love

GG

3

Thanks GG, no sorry I can't call you GG........Goldengirl, thanks for your comments which are duly noted. The wife and I are aware of the help which is available but it's getting over to the olds to accept it.

After M-in-l's last fall, breaking a wrist and a thumb in two places as she has osteoarthritis also, we arranged for a occupational therapist to visit. On the day of the appointment they phoned to confirm and F-in-L cancalled it and said they were not welcome. This is the type of problem we have

 

4

Hi  Bowie

i work in social care and if you can encourage a ref to be made and speak to the social worker prior to the visit this may set the scene

it may be worth discussing with your dad that people are no longer put in homes etc.  there is something called the mental capacity act and basically people can take as many risks as they like fall on a regular basis as long as they have the capacity ie the understanding of the consequence of taking such risks

when I visit people the common theme is losing control and I think by discussing how the law is now etc this helps people feel a little more empowered.  I would feel the same ie keep services away and things will remain ok .    Unfortunately that not is the case BUT if you dad sort some advise In the form of a ref now he could think about it and make an informed choice.   This will help put the control back In His hand and alleviate his anxiety hopefully.  It's a shame but most of us don't want any support at this time and it is only when there is no choice ie carer breakdown, falls etc that services become involved 

try and be honest with him of how you feel,  sometimes a little bit of help may help him feel more in control

 

 

I am off work at the moment and have been on Parkinsons meds since October.  I have been off for three weeks.  Not  knowing what will happen in the future has made me very anxious.   Perhaps your parents feels similar

when I visit people I discuss options like shopping,  as long as they know they have choices that is the main thing.  Often putting a little bit of support will help people feel more confident and open to more in the future 

 

you may wish to look Lasting Power of Atorney for finances and care  if dad wishes to consider this

also attendance allowance is not means tested, may need to make ref to benefits assessment

take care x

 

5

Thanks KM

Again good points raised, thank you.

My F-in-L is the most arrogant, head strong, cantankerous, stubborn old git you could ever wish to meet. He point blank refuse to discuss her condition only to tell us as the problems arise and stone wall us if we try and make suggestions.

He contracted bowel cancer in 2010 and is now in remission, skin cancer in 2012 and is now in remission, 2014 he got Lymphoma and is now in remission. I saw him through his treatment from start to finish, infact between the two of them and their conditions I made 81 trips to the hospital last year. Now he wont mention anything cancer related as he thinks he has a full cure from everything (he's 89)

I am convinced if he stood back and allowed help to come his way M-in-L would be far better off and have a better quality of life, but he wont, and I think this is our biggest problem to overcome.

We both really appreciate all the suggestions offered

6

Hi Bowie,

As is usual with this site my entire thought-out post has disappeared.  In short:  you are under the recent Care Act to an assessment of needs, both information and practical, whether the cared for agree or not, and it is the responsibility of the County Council to arrange this though due to the gradual integration of health and social care arrangements will differ from county to county  Age UK should be able to point you in the right direction and they also have a wide range of comprehensive information leaflets themselves and be able to talk you through your situation which unfortunately is an all too common scenario

The assessment will help you to think through your options and make a plan even if in these  times of cuts, actual financial and practical help may be hard to access.

 

Do try the helpline above.  It is staffed with experts in social, nursing and welfare matters

7
hi bowie welcome not a big writer but a big hello
8

Hello, Bowie --

Eileenpatricia's advice (above) sounds excellent and might yield help.  One other thought:  since your father-in-law is so protective of his wife, I wonder if you could appeal to him by telling him what you wrote above, that HE is preventing his wife from getting a better quality of life?  (Truly, he is responsible for her decline.) He might be in such denial that that would be useless, but it's a thought.

I hope the helpline can add to Eileenpatricia's concrete ideas.  Best of luck!

J

9

Just a small follow up since my OP.

The wife over ruled her father and managed to get mum assessed by the dementia team at home who have prescribed a drug ( forgotten the name sorry) On the face of it there seems to be a small improvement, but we have been warned there will come a time when it's no longer effective which may be sooner rather than later.

On the whole a step in the right direction that he may just allow us to help more.

10

Excellent

iin my experience if people accept a little support and they find this helpful they will usually agree to further help. Small steps

the medication can be very effective, sometimes can upset the stomach initially

wishing you well

11

Ohh for the love of God give me strength.

We thought we were getting somewhere with the situation when help was accepted for addressing the dementia problem, and a great help the meds have been, with a noticeable difference.

We pressed on and talked them into trying to sort out the incontinence problem, which they agreed to and an appointment was made. Dad-in-law insisted on taking her himself and like fools we agreed.

he did indeed take her, then stayed in the waiting room, so he never talked to any of the team there, and with mums memory the way it is, we have no idea what they said or suggested, neither has she.

Why is it so hard for them to see we're not trying to take over their lives, but just to be there to help do the things they cant manage anymore, which should make things more comfortable for them.

12

Hello again kind people of the PD forum.

It has been a while since I last posted anything as life suddenly became very hectic with other family problems.

A lot has certainly happened in the last 9 mths with mum-in-law declining further still, as expected. She had 8 falls in as many weeks but fortunately without and serious injuries, cuts and bruises only. We tried to offer help to the old git about walking aids which he point blank refused as he said "It makes her look old" So we called in Occy health, who did make suggestions of the necessary equipment required, which was duly ordered. With the on-going support of their GP he convinced them it was time to get in outside agency staff to help, after a face to face confrontation with him the old git gave in and accepted 2 carers to come in in the morning to get her up, showered and dressed. This went on for a week then unfortunately in a moment of unsupervision the old dear had a fall. She was taken to A&E as she had a blow to the head and a gashed elbow which needed attention, she also complained of a sore back which was suggested she may have fractured a rib. We were sent home with some pain killers and told to keep an eye on her.

5 days after the fall my wife happen to be in their apartment when the old dear had a mild heart attack and a mild stroke. She was blue lighted into A&E and from the time of the stroke to receiving medical attention was a just under 45 mins. She was admitted to a high dependancy ward after almost a full night in recuss. Since then she has had a collapsed lung, x-ray showing 7 broken ribs 3 detached, a chest drain, 2 gastric bleeds 1 upper 1 lower, pneumonia, uti and a skin infection. 

To everyones amazement she started to pull through most of the issues she had, considering we had 3 calls to get there quick she survived. Her Parkie meds were administered in patch form (which are brilliant as they avoid the peaks and troughs between normal medication times) and with in a week the chest drain was out, the power syringe drive was out and all the canulers also gone. She was like a new woman or at least how she was mentally 10 years ago.

Today however and we've now had a set back, she has contracted aspiration pneumonia and gone down hill quite quickly. The medical team say she'll need a feeding peg, but they're not sure if the inability to swallow is stroke related or Parkinsons related. They want to preform more tests but she's not conscious enough to assist them, they have said the next 3 days could be critical.

The old git (while I can't knock his spirit ) has convinced himself she'll still be home with in the week, even when he was told she is on a DNAR he said it is only precautionary.

Sorry to whinge and go on a bit, but it was nice to get it all off my chest (no pun intended)

 

 

13

Bowie, you have my amazed admiration!  Even listing all you've been through is a trial in itself!  You have a generosity I could never equal and must have superhuman control of your temper.  I don't suppose the "old git" will ever realise how lucky he was to have a son-in-law like you. 

Best wishes for future dealings with your in-laws!

J

14

Why thank you J for your kinds words, very much appreciated. The wife and I have put ourselves in this situation thinking we were doing what was best for them, and now we have to just get on with it. It is hard at times when the old git squats with clenched fists screaming at us there's nothing he needs or wants from us and yet usually with-in 48hrs one of us are attending to one of their emergency care needs ( falls, busted varicose veins, illness, cancer treatments, doctors appointments, hospital appointments, hearing and eye tests etc etc etc to name but a few)

( I wont mention the fact my own father, 88, is also in and out of nursing homes and hospital, and a lot of my time is obviously taken up with mum and dads care as well, and if that wasn't enough my youngest grandchild, 14mths, not wishing to be left out of the attention decided it would be a good idea to be admitted to hospital with suspected meningitis, it wasnt, ) 

15

So often in a marriage, it seems that one set of parents is easy to get along with, while the other is impossible to satisfy.  My husband came from a dysfunctional family (everything from child abuse to mental illness) and told me shortly after we were married that one thing he would never agree to was taking his parents in to live with us.  His mother always had to be the center of attention, was always right about everything, and gave advice freely.  His father had a nasty mean streak in his personality and was quick to quarrel.  We used to see them two or three times a year; it was all my husband could tolerate.  Meanwhile, my parents lived in the same town we did and never asked for anything.  They were grateful for our visits and waited to be invited to our house.  It was like night and day.  Although we helped my widowed mother in her old age, we never did live with any of the parents.  And I was relieved of the responsibility of visiting my in-laws when, sadly, my husband pre-deceased both of them.

I'll never forget their response the night I called his parents to tell them their son had passed away.  You'd have thought I was offering a weather report for all the emotion on the other end of the phone line!  The conversation lasted about one minute, because they asked no questions, made no comments.  They just let me give them the basic facts and ended the call.  

However, with all the irritations and conflicts over the years, my in-law situation didn't compare to yours.  You are living with daily, hourly responsibilities without getting any cooperation, much less gratitude from the recipients of your attentions.

Best regards,

J 

16

Very sad to have to say after a 22yr battle and an incredible hard last 3wks on the early hours of Wednesday morn mum in law lost her fight. She slipped peacefully away with her family around her. Now at peace, less pain less worries, RIP Della

17

I offer sincere condolences.  Even with the complexities and difficulties of family relations, you and your wife did all you could to improve her daily life.  I am very sorry for your loss now.

J

18

Thank you

19

Sorry to read your news Bowie, thinking of you and your wife. Tough job being a carer, tough also when the job  comes to an end....but it sounds like you did as carers do, and coped with and responded to events as they happened.

Take care as you go through the days ahead, and in supporting your father-in-law.