Pacemaker for 93 year old!

My Mum who has dementia had a 24hr holter fitted. The results came back with long PR interval 304 milliseconds and first degree heart block with bradycardia at 26 beats sometimes during the day. Mum was on Cinacalcet at the time of the monitor and I read that it can cause irregular heartbeats and bradycardia. So she stopped the cinacalcet and took nettle tea which did the same as the cinacalcet in reducing her blood calcium levels and hyperparathyroidism. The cardiologists are insisting she has a pacemaker fitted. I have asked for another 24hr holter test before the pacemaker is fitted but they have refused. Surely shouldn't all avenues be explored first ie electrolytes, drug interactions, supplements she is taking. They said they want to fit it to avoid bony injury due to falling. She has never passed out but they keep mentioning a fall she had but this was due to weakness and dehydration from having a period of not getting out of bed and not eating properly, we now have a carer come in to make sure she gets out of bed each day and that has made a big difference. Mum is normal some days and yet others she does keep repeating herself. We go for half hour walks most days. I am so worried about the pacemaker fitting and if it really is necessary. The letter states that the cardiologist spent time assessing her, stating consultation in excess of an hour, it was exactly 37 minutes long, I feel like we are being a nuisance by questioning the ethics and necessity of a pacemaker, like how dare they question our decisions! I didn't even get to speak to the cardiologist about another holter, it was passed on to her by various people and then I received this letter. It also said we were offered an appointment for a fitting and I declined it because of my brother being abroad at the time, I couldn't cope on my own. Having had a heart attack myself I am very sensitive and anxious with anything to do with the heart. Does anyone have any advice, or know of elderly who have had this done good or bad, or can shed any more light on this or perhaps people might know that it has a beneficial effect, good or bad comments please, thank you. x

31 Replies

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  • Hi I am 62 and have had a pacemaker since late 2014. My QOL has improved greatly but each case is different. What are your mums symptoms. How does her dementia affect her? I had to lie flat for a while post insertion and for a number of weeks not raise my arm.

  • Will mum be able to follow post procedural guidelines. If she is at risk of falls due to bradycardia it needs to be taken into consideration. It's hard having to make decisions for others but weigh up the pros and cons. Has mum capacity to be involved in the decision making?

  • The cardiologists were talking to myself and my brother and not looking at Mum, just because she can't remember what she did yesterday and has short term memory doesn't mean she can't have an opinion. I asked her what she wanted and she said yes but I dont think the cardiologist went through all the risks properly, just said low risk and not an operation just a procedure. She would be admitted in the morning and returned home the same day, is that a good thing or would it be better to stay overnight, I am worried that she might have problems during the night on her own.

  • Difficult for you all try reading round bradycardia etc. I went in am not general anaesthetic just light sedation didn't feel a thing. Is Day case but I had procedure late in day so in overnight. Had x Ray next morn and home. As there is a cut some localised discomfort. As I say my QOL has improved good luck keep us informed

  • She should not be left on her own overnight after the procedure for a few days at least as there are possible post operation problems. I developed a pneumothorax and had to have a very painful procedure to drain my chest.

  • Mum has no symptoms, its difficult to say whether she is tired because of her age or the heart. Some days she is tired and others not. She does take supplements and has low thyroid. I am worried as she lives on her own but has carers come in morning and evening just to check on her and give her a good breakfast and make sure she gets up and dressed. I live 20 mins from her by car so its a relief that I know she is cared for. So no particular symptoms. High bp, kidneys not brilliant but ok. Mum has a stiff left arm anyway which causes her pain, she had an xray and nothing can be done, just age they said. She also has balance issues and walks holding onto my arm when out and uses a stairlift.

  • Ask for an MRI compatible one in case she ever needs an MRI scan in the future.

  • Can switch off for scan which they did with mine

  • That is why they are compatible. My problem was the imaging department at the hospital where it was fitted had not agreed a protocol for doing the Boston Scientific one. They only had an agreed protocol for the Medtronic one. I hung on for about six months before getting a scan done at greater cost elsewhere.

    Only recently after two years have they agreed the procedure. Part of the problem is that the NHS hospital does not own the scanner as they cannot afford it. It is owned by a private company who have them in about 30 hospitals in the South East and use it for private patients and the NHS pays per scan.

    I had read up on the protocol before having my scan and in no way did they follow the protocol.

  • I wonder if there is a health unlocked pacemaker forum where you may get better advice. My only comment is that a £20k procedure would not normally be offered lightly.

  • Agree with that Bob

  • The cost varies greatly depending on the type of pacemaker fitted. I believe from about £11K to £26K

  • I would go with the experts, it may give her a new lease of life and she did say Yes!

  • I do not know how relevant my experience is but I cannot say that my QOL has improved since having a pacemaker in 2005. There was deterioration through two pacemakers and massive deterioration with the insertion of a CRT-D device in 2015. The only improvement was that I haven't had a syncope since the first PC was put in. However every worthwhile activity I did is now denied me or at least seriously compromised. I also have suffered poor communication with cardiologists having to get medical records to find out what was going on or get second opinions to discover things done which I was not told about and objected to.

    My fear is that cardiologists who treat us have an image of what we should be 'at our age'. I'm 77, and surprised that they are proposing to do anything for your mother given her age. There must be money in it.

  • Like you I feel no benefit from my one and they fitted a single chamber when it was supposed to be a dual chamber one.

  • Our frail Grandad is in early 90s when he had his pacemaker installed. Not open heart surgery so home within 24 hours. He has other health issues TB arthritis and 4 heart ablations previous to the pacemaker. He was in wheelchair but now can walk. I say go for it. X

  • Thank you for the reassurance. Will go for it.

  • Definitely go for it. It's a low risk procedure and could dramatically improve your mother's behaviour and progress. There is little to lose

  • Thank you for the reassurance, I am getting used to the idea.

  • I realise each case is different but, in case it helps, just to report that my mother had a pacemaker fitted nearly a year ago, aged 97. It has caused no problems and she is still active and walking around (without even a stick). I was surprised at the time that they would do this but seemingly it is a non-invasive procedure.

    Following 2 falls 2 years ago she spent 3 weeks' respite in a care home and then she made the decision to stay on in this wonderful place. Apparently she mentioned she felt unwell one morning and the staff reacted quickly and sent her to a local hospital - 2 days later she was in Barts having the pacemaker fitted, was kept in overnight (although she got taken back in the middle of the night to the original hospital because the bed was needed) and I think she was back in the care home within next day or so. It was certainly comforting to know she had people with her.

    She was put on an anti-coagulant but otherwise no change.

    Wish I had inherited more of her genes!

  • Thank you, it gives me hope. I think they report all the technical stuff but not on the persons wellbeing. We weren't given reassurance, they just said small risk. I have since heard from a distant cousin that her Mum was given a pacemaker and it greatly improved the quality of her life. So I shall be more positive but still obviously worried. They were going to let Mum home for the night on her own, I am not so sure that would be a good idea, better to stay and be on hand for checks etc. Is your Mum still on anti-coagulant? My Dad had to have regular blood tests and it affected the last years of his life not being able to do much.

  • I am pretty certain she is still on it, and will stay on it, but can check with staff when I next go in. Also pretty sure it was Apixaban which does not necessitate regular blood tests (there was a certain irony because a few months previously I had had to fight to get this for myself after being repeatedly misled and then discovering it can be a postcode lottery and that my CCG area only offers warfarin).

    Thinking about it, and I hope I have not unwittingly misled you, I think there was some mention of AF so maybe the anticoagulant was for that - i.e. not to do with the pacemaker.

  • most likely for AF. Mum is on nattokinase and serrapeptase and so am I after a heart attack. I ditched the blood thinners as I looked as though I had done a round with a boxer. How can that be good for you! If Mum has to be on a blood thinner for a short while thats ok but long term its a nono.

  • I am on blood thinner riveroxyban 24/7.

  • I feel it wrong, for your mum to be on her own, with dementia. She really should have 24/7 care now.

  • My thoughts go out to you, your Mum and Family. My Mother also has dementia, it is so unfair, I have noticed in my Mum, even though she has dementia and always repeats conversations, it still is Mum, patience, love and understanding is number one key. Imagine waking up in the morning, sharing what your going to do today and repeating your schedule for the day over and over again!! and the respondent tells you, you already said that, but you know you shared it for the first time. Upsetting for the dementia patient, because the patient feels your not listening, thus you don't care? or even feels your picking on them? For my Mum, I have a today note pad, so she writes her conversation/plans in POINT FORM, then when she repeats, knows it, when she views it on her note pad. 9 out of ten, we simply tell her how wonderful/cute she is and we end up laughing together, the 10th we simply give Mum her space and minutes later the frustration is gone. My prayers go out to you and Family, your Mum is wonderful, my respect goes out to you both. As for the pace maker, it sounds like your Mum is a priority one and this may be why her heart specialist wont enter into a second holster study? If this is the case, I would not hesitate. I hope all goes well for Her, my prayers continue over you and family. The benefit is well, imagine shopping at the supermarket and a person requires CPR/DEFRIBULATOR, but the supermarket has not got a defribulator, and the only assistance is CPR, until the Ambulance paramedics arrive. A person fitted with a pace maker has a defribulator 24/7, this is the huge benefit. Bless you.

  • Thank you for your thoughts. Mum has really normal days, no repeating herself, in depth conversations, 30 minute walks, laughter, I take lots of our selfies together, it makes us laugh and I pretend I didn't take it but I have it in film mode so I get her laughing and giggling, say cheese and she says stilton, precious moments. But some days its repeating herself but usually after my brother has visited the previous day with cakes, burger and chips and no walk. I think its linked to sugar and kidneys. I have now swapped the sugar for xylitol and I take the cakes away as Mum has one then forgets and has another etc etc. After these comments I shall be waiting for the pacemaker, I had bad comments from the first person I asked so it put me off but now its all good. I do give Mum supplements for her dementia and they seem to work well without Mum deteriorating and she is better than she was last summer. If Mum repeats herself I still answer Mum the same as before, I smile and repeat myself but then change the conversation to something else, that really seems to work. Mum is happy and content, loves the tv and reads the newspaper and sits by patio doors looking onto the garden and pond. She still lives in the same house for 63 years, she said she never wants to move. Its difficult but I am giving back what my Mum did for me and I can have no regrets in the future.

  • Hi Dramlouie, sounds like your mum is your best friend, much like my Mum and I. I am so proud of you for all you are achieving with you and your Mum, well done, your wonderful. When it is time for my Mum, my wife and I will care for Mum, noooooo nursing homesssss. My wife and I are fully trained and certified to care for Mum, no way will she end up in a nursing home. I saw my heart specialists and am now booked in to be fitted with a double chamber pace maker, not sure of the date and time. You and your Mum are inspiring and thank God for you both.

  • Thank you dafeydave, lovely comforting comments. If you are having heart problems look up Dr Sinatra, he is on Facebook and has some websites. He has fantastic advice for heart health. I ditched the blood thinners which made me look as though I had been beaten up, it was horrendous, I was black and blue. I also ditched the aspirin and now I take Natokinase, serrapeptase, magnesium, d-ribose, CoQ10, L-Carnitine, Ester-C, and omega 3 which is recommended if you have had a heart attack. All the information is on his websites. Good luck with it, I find I have to take half a potassium morning and evening otherwise I get palpitations along with magnesium. I hated them but started on these and they disappeared immediately, it proves that some problems are vitamin and mineral based. Take care and thanks for your post. x

  • A friends mum had a pacemaker fitted at around 94. Lived to be 100 and would not have died then but for hosp. not recog. a stroke ....can you imagine.She continued to walk up and down 4 long flights of house stairs until her death.

  • Well I thought I would update the situation. I have done my research and have changed my mind about the pacemaker, I have had more positive comments than a few negative. I believe that is what research is about, to be ready to change ones mind. Anyway, Mum is on the list but because I cancelled one appointment because my brother wasn't in the country and because I stick up for Mum and keep a close watch on the Doctors and correct their mistakes at reporting falls when Mum hasn't had a fall etc I am now being investigated for domestic and financial abuse of Mum. I am so angry about it. The Court of Protection have frozen my Mum's accounts, so she has no money, nothing, she can't go out, just as she wants to get out and enjoy the spring. But the irony is, who is paying for her food now, for her consumables, taking Mum out for walks, visiting Mum and giving her lunch. Me, out of my money. So the Court of Protection would see Mum starve if it wasn't for me! When I look back at the things I have bought Mum, the fuel for a 22 mile round trip 6 days a week plus trips out etc etc etc and I haven't asked Mum for money, I am incensed is not the word. I have receipts for everything, the worst thing is I look after Mum because I love her, Mum is family, my life, my Mum my everything, of course I give to my Mum. Then these pen pushing strangers come along and start interfering with our family, talk about stress, I thought I was stressed before but this is anger, rage and disbelief all in one. I have taken Mum for doctors appointments, arranged tests, spoken to Mum about her supplements but because she has dementia she is deemed as having no say in anything anymore. I took Mum for her normal thyroid blood tests last week and managed to get a kidney blood test as well. So I rang up today to see if the results had come back. No, they wouldn't talk to me, 'We dont have authorisation to talk to you'! What, I am the one that checks her thyroid results are ok, the doctor even admitted they know nothing about thyroid test results and Mum's private endo has had to put their mistakes right. But no, I can't see them and have to rely on the doctors now to treat Mum how they think fit, they have made mistake after mistake with Mum, giving her drugs that shouldn't be given together, boxes of aspirin pushed through her letterbox when she won't remember that she has just taken one. I put her supplements in a timed locked machine, but the doctors think its ok to push boxes of aspirin through the door. I couldn't believe it, lucky I was there when it fell on the floor in a paper bag. Well sorry for rambling on, what is this place coming to when strangers come between family members. I haven't been interviewed, and now its going to cost my Mum thousands of pounds a year for them to look after Mum. I wonder why! If I didn't care for my Mum so much I would have thrown my hands up and walked away, but I can't. I feel as though I am being watched, how dare they. I know that they might be doing good for some people. If they just asked my friends, Mum's neighbours, Mum's friends how much I have done for Mum. I will stop there, I have had my rant, it has broken my heart, no thanks, oh you are doing so well caring for your Mum, she is nearly 93 and looks so well. It would be nice to have some thanks. Suddenly I feel old and disheartened, its not what you want to hear when you are a carer.

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