Family problem

[Chirley]

Hi, as many of you would know I was diagnosed with MDS (? Incorrectly) in 2010. Since then I've been found to have a metabolic disease which causes copper deficiency and the resultant BM failure. This has responded to IV copper therapy.

Now for my problem. I was found to have del 15q which was found to be inherited, my mother has also tested as del 15q. She has been reasonably healthy most of her life apart from smoking related vascular disease which caused her right kidney to die. She recently turned 80.

For the last 3 months or so her health has deteriorated. She has stopped walking to the local shop, she has stopped gardening, she no longer does any cooking or cleaning. She is becoming neglectful of her own hygiene, she needs a haircut but refuses, she doesn't clean or cut her fingernails or toenails. My dad says she has become incontinent of urine and sometimes of her bowels but she refuses to admit it. She wears the same outer clothes for days and she looks unkempt. She is also short of breath on the slightest exertion and extremely pale. She has always been tanned and pink
but now she's just a white yellow colour. She has lost weight and her diet is very poor. She refuses to eat anything except fruit and drinks nothing but tea. My Dad makes nutritious meals for her everyday but she either takes one mouthful and leaves it or won't touch it. She used to be up at the crack of dawn but now she sleeps til after 9 then sits in a chair all day dozing off and on. She is extremely bad tempered and has withdrawn from all of us. She has always been close to my brother but now she even refuses to speak to him on the phone.

Needless to say my Dad is beside himself with worry and the actual physical toll of looking after her and all the housework, gardening etc is wearing him down too. He's 84 and has a bad heart with spinal cord stenosis. He has had a number of mini strokes and although he's coping well it's a lot for him to do. We have both spoken to Mum about her health and her lethargy but she gets really abusive and denies anything is wrong. She accuses Dad and I of smothering her and lying. She refuses point blank to go to a doctor. My mother has always been demanding and rude so this behavior is not out of the ordinary.

I asked my Dad whether he thinks that Mum is not competent to make decisions any more and he thinks it's a close call but neither of us wants to take her ability to make decisions away from her so we just pretend to ourselves that everything is okay.

I'm concerned that Mum has finally developed the same disorder that I have and I am desperate for her to see her doctor.

Has anyone here have any strategies that Dad and I can use to persuade her to seek treatment? Dad and I both feel increasingly angry with her for burying her head in the sand and refusing to let anyone help her. We don't want to feel anger, we both love her and don't want lasting memories of her as being tainted with anger.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
Is it possible to talk with a doctor about your mother's symptoms of rapidly progressing dementia and make him/her see her at her home? Then the doctor could perhaps could order lab tests for example Hgb, B12, copper and borrelia. I don't know which tests that can be taken in a home.

If this not is possible you have to "take her ability to make decisions away from her" because as you know some of the diseases that causes dementia are treatable but treatment should start as soon as possible.
Kind regards
Birgitta-A

[Sally C]

Chirley,
I agree with Birgitta. Your Mom has all the symptoms of dementia. Whether she's happy or not you have to do what's best for her.
I was responsible for my Mother as well. I always said raising parents was not an easy job.
Good luck with a very difficult situation.
God Bless,
Sally

[cathybee1]

Chirley, I am so sorry you and your dad are facing this situation. I had some similar issues trying to get my mom (who lived by herself) to be evaluated medically and psychologically. The hook for me was my mother's deteriorating strength which gave me and my sisters some leverage. In the end, I took her to a geriatric clinic, which provided evaluations by a medical doctor, a social worker, a psychologist and a pharmacist. I bought books on Eldercare, and talked to several medical social workers for advice. Every situation is different, but these professionals have seen most of them. My mom was not abusive, but incredibly stubborn and resistant to any kind of help.

I'm taking the liberty of attaching a link for you. I heard this program a couple of years ago. The books mentioned sound like they might be very helpful as well.

http://www.npr.org/templates/story/s...ryId=129106620

[Chirley]

Well, after a few months of trying to persuade my Mum to see a doctor, things finally came to a head in the middle of the night. She developed chest pain and breathing difficulties.

My Dad rang me in a panic so I called emergency services. The Ambulance officers told me she had some ECG changes consistent with having had a heart attack in the fairly recent past.

She is now in hospital and they have found that her one remaining kidney isn't functioning and that it caused severe anaemia and this led to her heart issues. She has been transfused with a couple of units of blood but this has caused increased breathing problems.

I don't know what the outcome is going to be but at least now she's where she should have been months ago.

I'm so frustrated with my Mums GP because we knew a few years ago that her right kidney had stopped working due to a blocked artery and that the left kidney wasn't that great but her GP has not ordered a blood test for her in almost two years. Dad sees the same GP and he says that the man is an incompetent idiot but at least Dad knows to ask for tests and referrals etc whereas Mum is happy to see a GP who just refills her prescriptions without even taking her blood pressure.

I feel like reporting him for negligence.

Dad and I are happy for Mum to stay at the local hospital until we know whether her condition is treatable but in the long term we would prefer her to be at the private hospital which treats our military and ex military people. They have an excellent reputation for care. It's further away but the travel will be worth it if it means she gets the best care.

I told Dad a month or so ago that I thought Mum had renal failure and anaemia and if she kept refusing medical care she would end up collapsing or having a heart attack and then she'd have to have treatment and I'm sorry to say this is exactly what happened.

My Dad is confused and vague this morning and he is miserable.

I love them both and it's horrible to see them both being so vulnerable.

Regards

Chirley

[milliken2]

Chirley;
You said in your post that she is more 'yellow' colored - which tells me she is jaundiced - indicating not only kidney failure - but more appropriately liver failure.
Is there a doc that you know that can 'admit her for safety reasons' but not actually giving the diagnosis of dementia? It sounds to me like she is more Alzheimer's. Does she get 'stranger' or more frightened when the sun goes down or it gets dark? If so - this is called Sundowner's Syndrome - and is indicative of Alzheimers. Their behavior changes, and they get less and less cooperative. Try lighting up the rooms she is in, and see if her mood changes. But, if she is incontinent of both bowel and bladder - that is another issue all together. Over here - they can '302' you into a facility for observation if the Doc or the police think she may be a risk to herself. This is usually a 24-48 hour hold so that all of the blood tests can be run, as well as the physical tests.
In order to check her mental acuity - ask her to count backwards from 20 by threes - 17 - 14 - 11 - 8 - 5 - 2 and acutally negative 1. If she can compute that, then her mental awareness is not as much at stake. But, you want everythihg checked out by the Dr. of course.
I wish you and your Father lots of luck. I remember those days - we had my MIL living with us because she was not capable of being by herself, and I was outside hanging clothes. I thought I smelled smoke - and sure enough - she had put a skillet on the back burner with oil in it - lit it - and fell asleep - my kitchen cupboards were on fire. That was the end of MIL staying here - and my BIL and SIL would not even consider taking her - so she went to an extended care facility then.
Take Care.
((((HUGS))))
Beth

[Chirley]

Hi, I spoke to Mum at 7.30 this am and her livers ok, it's her kidney function that's bad.

At 11.30 I rang to see what ward she was admitted to. Switchboard said 3A and put me through. 3A said she was still in ED (11 and a half hours after getting there). ED said that she wasn't there and put me back to 3A. Well here it is at 12.50pm and guess what! They still don't know where she is and no one seems to be in the slightest inclined to try to find her.

I also asked if I could have the phone number of the bed she was going into and they DON'T have bedside phones. There's no way for her to ring us or for us to ring her. She's 80 and doesn't own and has never used a mobile phone so I don't know if it's worth buying one for her.

I'm catching a maxi taxi, in my manual wheelchair which i have trouble using, to the hospital to try to find her and I'm already in a foul mood.

Ughh.

Chirley

[cathybee1]

Oh Chirley, what a terrible week. Feeling for you, your mom, and your dad.

[Birgitta-A]

Hi Chirley,
I do hope that you now have found your mother! Severe anemia can cause brain symptoms - hopefully your mother will function much better when all tests are as normal as possible. Too bad with the GP!!!
Kind regards
Birgitta-A

[Chirley]

I found Mum and she is getting wonderful care (despite losing her for twonhours).

They needed to give her the blood transfusion because her Hb was so low she was having heart ischaemia but she became overloaded with fluid because her kidneys don't work. Then her lungs filled with fluid and now her heart is under pressure again.

The renal doctors are deciding whether to insert a femoral vascath to try some dialysis.

I tried to talk to Mum today about her end of life wishes but she didn't understand me so I couldn't push the issue. I still don't know if she wants all measures to prolong life or just comfort cares. It's a hard decision to make without her input. I don't want Dad to have to shoulder that responsibility because he is extremely distressed already and he is also not well.

The good news is that my prodigal brother has stepped up to the mark and is coming tomorrow to help my father around the house and to help Dad get to the hospital to see Mum. My Big Brother (my hero) is BACK!

I'm so tired. I was told to rest in bed for 48 hours post liver biopsy but I've only managed 1 and a half hours sleep in the last 2 days. Time to rest when things settle down I guess.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
Hope you won't get any complications after the liver biopsy due to too much activity but we understand that someone had to help your mother.

Good that she is getting wonderful care and hopefully they won't loose her again.

Perhaps your brother can help with both parents so you can get some rest at last?
Kind regards
Birgitta-A

[Al's Wife]

Chirley,

So sorry all this is going on with your Mom and you're not able to take care of her and yourself. Try to stay strong. God bless,

[cathybee1]

Oh Chirley. Glad your brother is going to provide some relief. You deserve some rest, though I know that's difficult with what's going on.

[milliken2]

Chirley;
I hope things are settle down for you a little bit, and that you are feeling better. Maybe with brother there - it will ease up a bit, and you can really begin to heal. Our thoughts and prayers are always with my MDS family - even though I may not be posting. Take care Honey.

((((HUGS))))
Beth

[Chirley]

Mum has been in hospital for just over three days now and the extreme breathlessness she developed after her blood transfusion has not improved. In fact she is worse than before her admission and I'm starting to wonder if giving her two units of blood within 6 hours when she was in complete renal failure was medically a very poor decision.

I have asked on numerous occasions to speak to any member of her treating team but neither my father nor myself has spoken to a doctor since her admission. I'm getting quite angry at the lack of communication. We have not been told her official diagnosis let alone, investigations, treatments or prognosis. Anything we do know is because I have parked my wheelchair in the doorway to her room and obstructed the nurses exit until they answered my questions.

I finally got my power chair and caught a taxi to the hospital by myself today so Dad could stay home and have a rest. Mum couldn't talk much because she's so breathless. But she did tell me that this morning was the first time anyone had showered her or cleaned her teeth! Because she has a history of vascular disease and DVT she is supposed to take Asprin but they have stopped all medications so they have ordered her to wear compression stockings. When I got there today she didn't have the stockings on and I found out that they had not been put back on after her shower 8 hours prior. She also had a small 100ml bag of saline with about 30mls already used still hanging on the pole but not attached to her (because of the fluid restriction) they only use this fluid for a slight dilution of her antibiotic.

I worked in Infection Management and was part of the team that wrote the hospital policy which states that once an IV tubing has been disconnected from a patient it has to be discarded and a new tubing used each time. There was an obvious intention to reuse the tubing hanging there and I stated quite plainly that I would not tolerate that tubing being reconnected. The nurse simply rolled her eyes and walked away.

When Monday morning comes I'm going to ring the ward and tell them that I insist on having a conversation with her treating consultant after which I will be having her transferred to the other hospital. If I don't get to speak to her doctor by lunch time Monday I will be contacting the patient liaison officer and placing a formal complaint about lack of communication and active obstruction in finding out information that we are entitled to know.

I'm so upset that it's 3 in the morning and I haven't been to sleep yet. Some of the reason for not sleeping is because Mum is sick but a lot of it is because I know so little about what's going on with her that it's playing on my mind.

My big brother did come into town, took my Dad to see Mum at the hospital, then left again. I don't even know where he is living at the moment because he owns a number of houses in three different cities and towns and moves between them whenever he feels like it. He rarely answers his mobile phone and is very difficult to contact. Oh well, so much for the prodigal son returns.

The stair lift is being installed into Mum and Dads house next week (I negotiated a pretty good deal, if I say so myself) and the builder is coming on Tuesday to redesign the upstairs bathroom and toilet so that it will be easier for them to use. (Dad had a small fall in the bathroom this morning too and hurt his elbow).

Life is very busy at the moment and physically I feel very run down. If Mums care isn't sorted out in the next week, I'm going to have to cancel my
treatment at a time when I need to be as well as I can be but I can't see any other way to do it.

Cup of tea time.

Regards

Chirley

[cathybee1]

My heart just sank reading your last post. Talk about piling on! The hospital! And your brother flaking on you. Is the patient liaison a person who acts as a patient advocate? Not on duty during the weekend? So you can get a break to deal with your own medical issues?

Big hugs to you, Chirley.

[Sally C]

Dear Chirley,
You have more to deal with than any 10 people should have to. I just don't know what to say other than God love you and may He sustain you.
I wish I was there to help.
God Bless,
Sally

[Chirley]

Thanks for your kind thoughts but somehow it feels wrong to so much as think about how IM feeling.

Mums treating team doesn't work weekends and have a generic junior doctor on call instead and the patient liaison '(advocate) doesn't work weekends either.

She is in a room with three other people, two men and one woman. One of the men is loud and demanding and the other man has a continual mental health nurse with him to control his violent outbursts. The other woman in the room is quiet as a mouse. The actual physical environment is not pleasant but we felt that as long as her care was good it didnt matter but Mum is not getting any sleep and the whole atmosphere is depressing. She is on a one litre per day fluid restriction which includes the IV meds so she has very little to moisten her mouth with and nothing has been supplied to ease her dry mouth. I've ordered some Biotene gum and spray for her but it won't come for a few days. Her O2 sats are sitting in the high 80s and she's on oxygen via nasal prongs at 2l/min but it's obviously not enough to keep her comfortable but I can't find anyone there who is willing to tell me why her oxygen can't be increased. She doesn't have a history of COPD or anything that would prevent her having a higher concentration of O2 as far as I know.

My Dad is going to see her today but he won't ask any questions or advocate for her if something's wrong, he's too polite to make a fuss. It's Fathers Day here and after I come back from paying some bills for Mum and Dad, I'll make him a lovely roast dinner. He came to see me about an hour ago and he admitted that it's starting to overwhelm him and he doesn't feel like he can keep going. The good news is my brother rang Dad for Fathers Day and said he is coming back tomorrow and will stay in one of his houses in the next suburb. He said he had to leave because it's bushfire season and one of his farms had long grass from being understocked with cattle and he had to go and slash some paddocks as a fire precaution.

I have a big basket of ironing to do for Mum and Dad, it's not my favorite thing but it's something I can do to help because I can do it sitting down.

Better go.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
The ward (or hospital) where your mother is staying has obviously not enough doctors and nurses for examinations, care and communication. Your mother is lucky to have a daughter like you. I am sure that you either will get her moved to a room, where she can get sleep (so important for our immunesystem) and good care or to a hospital that functions better.

Good that your brother is returning!
Kind regards
Birgitta-A

[SLB]

Hi chirley, so sorry to hear about all your dramas! It sounds horrible. I hope your brother manages to provide some extra support. How are you healing from your biopsy? Hope things start looking up for you all soon. Hope you and your dad enjoyed your roast dinner!

[Chirley]

When my Dad came back from visiting Mum he was very upset with little tears running down his cheeks (first time I've ever seen him cry).

Some doctor had seen Mum in the morning and told her that she was probably not going to survive. The nurse overheard this and told Mum to ignore him because he was "just in a bad mood". Mum told Dad this and he just lost the plot. Mum was also extremely breathless (which is spasmodic) and very distressed.

I rang the Nurse Manager in charge of the hospital (no liaison person on duty) and told her that i wasn't happy with the medical care, the active obstruction to communication and the inappropriate comments from the doctor that morning. She said that the hospital computer lists my mothers diagnosis as "anaemia" and she didn't understand what all the fuss was about. I told her that my mother has renal failure and respiratory failure and that the anaemia
was a very poor third consideration. She agreed to talk to my Mum and read her medical chart and ring me back.

When she rang back she did agree that Mum had renal failure but she was only breathless because of the anaemia which they didn't want to transfuse her for because of the kidneys. She also said that the heart attack she had had the day before was very mild (we hadnt been told anything about a heart attack and neither had Mum). I let the NM know that I didn't believe her explanation for Mums breathlessness because she was given two units of blood in ED within a six hour period and that she didn't have the breathing distress until then. That if anaemia was causing the problem her breathing should have improved if the anaemia had been treated and not the exact opposite.

I demanded that they start arranging for an inter hospital transfer ASAP but the NM refused to do anything, however she did arrange for me to talk to Mums doctor this morning at 9 am and when I meet him he's in for a bit of a shock.......I understand that every one is fallible and that medical personnel can make mistakes (which doesn't make it right) but to lie by omission and cover up and deny their mistakes is downright unforgivable and even criminal.

Dad told me last night that he will keep living until Mum dies so he can be there for her but after she's gone he's going to take his own life. This is not a reactional depression talking, I know he means it and I can't judge him for it.

In my own mind, I'm still hopeful that she will pull through but I need to optimize her chances by getting her better medical care in a calmer quieter
environment, so I will not rest until she is transferred to a better facility.

I wondered if by agitating for Mum to receive better care, I was adding to Dads emotional distress but he gave me a kiss last night and thanked me for "making the bastards accountable".

Oh, and SLB, I've been so busy I really haven't thought much about the biopsy but I've had some RUQ pain for the last year or so but it's been a lot worse in the last few days and I keep getting pain in my right shoulder, at the moment it feels like yet another thing to make life just a bit harder. Hopefully, it will go away soon.

Regards

Chirley

[cathybee1]

Bad to worse! I can't imagine a doctor ever telling a patient anything like that without having other family members present. I hope your brother gets back pronto. Your dad needs a lot of support, and you can only be in one place at a time. Sending hugs your way.

[Birgitta-A]

Hi Chirley,
Have they examined your mother's lungs - she can have pulmonary edema due to too much fluid after the txs. Then she should be treated for that.

Too bad with the doctor and his "bad mood" - I think he totally lacks empathy and not should work with patients at all.

How sad that your father is so depressed - we hope that your mother will improve and that he will feel better.
Kind regards
Birgitta-A

[Chirley]

Hi Birgitta, yes, Mum has pulmonary edema from the blood transfusion they gave her in ED and, no, that hospital wasn't treating it.

I've had Mum transferred to a better facility and the consultant immediately put her in CCU and placed her on CPAP. They are already starting to actively treat her fluid overload and the doctor has already phoned us this morning and told us about his plans and her condition. She's only been there twelve hours and we know more than we knew in 5 days at the local hospital.

Turns out her admission Hb was 50 and her eGFR was 3 her creatinine was 720. She was only a little short of breath on admission, consistent with the anaemia but then they gave her 2 units of blood in 6 hours and now she is in respiratory failure. This new consultant says that if we can get Mum over this acute respiratory problem, that with diet, fluid restriction and medical support, it's possible that Mum might not only live but live without dialysis.

This just makes what the previous hospital did to her even more incompetent.

Yesterday I had to threaten to complain to the Minister for Health before they agreed to transfer her to this new hospital. The doctor (first time I had ever spoken to one in 5 days) told me that they didn't want to treat her kidney problem because they only had a small number of beds set aside for renal patients and they were already full and that's why she was being treated as a general medical patient. I wanted to scream and hit someone but I kept my cool and told her that we were not agreeing to withdrawing treatment until some treatment in some shape or form had been tried and found to be ineffective. How can you agree to withdraw treatment when they haven't given her any?

Dads a bit more positive today, just knowing that Mums receiving help to breathe and isn't being left to battle for every breath. Now at least she might get some sleep and be able to regain a little strength. If she doesn't make it at least we know that she is more comfortable now.

I don't know if I should go to see Mum today because I don't want to disturb her or make her try to talk but on the other hand, I don't want her to think that she's alone. She is completely mentally alert and aware now, more than when she went to hospital. Ironic isn't it?

The builders are coming this morning to quote for the new bathroom so I had better go.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
Very good that you managed to get your mother transferred to a better hospital!!! Now we hope that she will improve!

The confusion can have been due to too low oxygen percent in her brain initially caused by anemia and then by pulmonary edema. Perhaps she will continue to be mentally alert now when she is getting treatment that is OK.

Hope your father continues to be more positive!

Good luck with the new bathroom!
Kind regards
Birgitta-A