What shall I do for the best?

My wife of 56 years has Parkinson's and dementia. She can just about move about the house with the aid of her stick. Her memory is very patchy, she has to be shown how to sit down on a chair. She behaves like a cantankerous four year old – not fully accepting that there is anything wrong with her. She has had Parkinson's for some 16 years but it has only been some 4 years since walking became a problem and her memory 'dissolved'.

On a couple of occasions, when I was ruched into A&E with first an Asthmas attack – I couldn't breath and then with Sepsis shock and MRSA, she was entered into a Care Home. She stayed a month each time to give me time to recuperate. They were nice Homes – costing me £750.00 a week – but she didn't like it and became ever more disorientated. I bought her home as soon as I could.

We have now come to a bit of a 'crunch'. My own medication for COPD, Hypertension, Diabetes 2 with peripheral nerve damage is such that I am forever tired. What with the Steroids I have to take in order that my knees allow me to stand up but affect my immune system I am in a rather decrepit condition. I do have a Carer come in for an hour to get my wife up, washed, dressed and breakfasted, then another come in for 4 hours on weekdays to do the cleaning, washing, shopping, get lunch for my wife and generally look after her – walk in the garden, trips to the shops, etc. I also have a Carer come in at night for 30 minutes to get my wife sorted and into bed. None of this help is free and it cost me £400.00 per week.

At night my wife get me up a couple of times to go to the toilet and get her back into bed, as this often coincides with me being awake with painful feet (peripheral nerve damage) its not too bad. What is a problem is when she wakes up before 6 a.m and wants me to help her get washed and dressed. Until I have taken my morning medication and had a cup off coffee I am like an ill tempered zombie – I tend to us unCarer type language and put her back into bed turn her TV on to await her Carer to arrive.

Being a Carer does not come naturally to me. I am more of a provider, with my wife being the Carer and this has seen us well for our first 52 years of marriage. My wife shows no positive emotions. Love has nothing to do with our relationship it has come down to a matter of duty – my life is one of turmoil, frustration and worry that looks like continuing to the end of my days.

The question is; do I put my wife into a Care home and have some peace, maybe even meet up with my friends ( who are still about) or continue to do my duty until I drop!

14 Replies

  • Dear lazyrideruk;

    I feel for you and your wife!!

    You have much on your hands.

    In answer to your question, I am not telling you what to do, just reflecting my own thoughts.

    If you put her in a home, will she be well cared for?

    How often will you visit her?

    It does sound like love has gone out the window for both of you.

    However, you mention duty.

    If you keep her home with you, how will your illness progress?

    How will you feel after she passes. Will you have peace of turmoil for putting her in a home?

    I don't know your exact situation, you know in your hearts of hearts what the right thing to do is!

    I wish you the best.

    Love from Eva

  • Hi Lazyrideruk. Let me, as a Pd patient, tell you what I think. Firstly, you are in a very difficult situation with your wife, for which I can offer no advice, other than to do what is best for HER!

    As far as you are concerned, which is probably the most important part of your question, your name sounds as if you think you are lazy, and your symptoms sound as if you are overweight and unfit. That is what you should be thinking about right now. You should be doing a lot of walking and exercise, rather than taking medication. You should start looking after yourself!

    You would not have done what you have been doing if LOVE did not come into the equation. When you love somebody you continue to look after them and do the very best for them, which it sounds as if you have been doing. Getting cross and ill-tempered is to be expected under the circumstances, but it should be worked on. It is not her fault that she has dementia. The Pd can normally be improved through exercise but with the dementia, that is impossible.

    Listen to your inner-self and do what you know you should be doing.

    Good luck


  • dear laz my hart goes out to you ,you are coping with a lot.dont forget to look after yourself as well.if things get really to much see your doctor who can help you make a decision what is best for your wife.best wishes to you and your wife.

  • Sometimes love is shown by doing the right and safe thing for others.

    Have you got health and Adult Social care assessments done on the both of you? They may be able to help, depending on your income.

  • Hi Lazyrider,

    My heart goes out to you and your wife. Since I lack the tremendous level of strain and struggle that you have in your life, please take my advice with a large grain of salt. If you can afford it, I think you should definitely put her in a Care home. It looks very much as though the stress you are under caring for her could soon undermine you, and then your wife would be institutionalized anyway. The present situation is patently unsustainable. If you put her in a home nearby, you can visit her as often as possible to reassure and comfort her, and to fulfill your strong sense of loyalty and duty.

  • JohnPepper, your assumptions are misplaced. (1) I get my 'name' from the fact that I am a fairly 'laid back' motorcyclist. (2) I may be a couple of pound overweight, but I am by no means fat. (3) With diabetes type 2 and peripheral nerve damage – dead feet – and COPD (and old age 81) your cure all exercise is not for me.

    You say I should do what is best for my wife. If I continue to be the main Carer for my wife and continue suffering the stress, my doctor gives me some 18 months. Without the stress I could probably go on for some 4 years. When I go, my wife will go into a Care Home.

    My wife has had 2 periods of 4/6 weeks in a Care Home. She settled quite well and called it her 'hotel'. It is a good place, my daughter, her regular Carer and myself were satisfied with the care she was getting. There were plenty of activities, but old and/or demented people don't join in very well, neither do they talk to each other – they tend to live in the own world.

    My wife was lonely and her physical and mental health did suffer – that is why I got her out of the Home as soon as I was fit enough.

    We have both been assessed. My wife has had a brain scan and been tested by the local memory clinic and diagnosed as with Parkinson's Dementia. My assessment was, as being in a fairly decrepit condition but with sufficient resources to pay for any personal care needed for either of us. All medical care and medication for both of us is covered by our NHS.

    I guess the question is; do I reactivate my life and my wife fades away in a couple of years and I go on for another year or so? Or, do I give up the ghost in say 18 months and my wife follows me after a couple of years.

    Either way, there is no 'happy ending' and at a cost of £35,000 a year for a Care Home, there is no cheap way out either!

  • Wow.. firstly can I suggest that you get your feet up everytime that you can because this has made a huge difference to the pains in my feet. I am a polio survivor with type 2 diabetes and so my neural pain in my feet is dual issue but the feet up every time we can works. Yesterday all day at the Lincolnshire Show on my scooter and boy did I suffer when home and all night and still some now but it is lessening.

    Second... I so empathise with you. My husband has Post Polio Syndrome as I do and Parkinsons and Mixed Sleep Apnoea and had heart attack and stents in December. I am concerned how long I am going to be able to manage my own Post Polio issues and still care for him and how do I make that decision when and how will he take this. He does not want to talk about it now.

    My comments would be that if your health is not coping and getting worse then that time has come. After all as Carers we are registered as such with our GP surgeries to ensure we get the help we need for our own health, if your health got worse and you were not able to visit.... Good Luck I wish you all the best.

  • As a caregiver, you MUST take care of yourself also. If you are well enough, you can make frequent visits to your wife in a care home to ensure her safety and care but if you are not around to supervise, who will?

    There is no way a doctor can tell you you have 18 months if you don't make a decision.

    Do they have respite care where you live? Perhaps your wife could go there periodically to give you a rest and allow you to rebuild your reserves. With her dementia however, frequent changes could make her more confused and cause more problems. You definitely have a difficult decision to make.

    Have you tried hiring help to keep her at home? Having someone stay with her at night so you can sleep may help. If you are well rested, you would be able to cope with her better during the day.

    You need to take a step back and make a list of the pros and cons of your options leaving emotions out of it. I was married for nearly 43 years to my husband who had PD. We made decisions about his care and where it would be given before it advanced so we were not emotional or guilt ridden.

    I wish you well and that you find peace in making this difficult decision. Do what is best for both of you.

  • Would be interested to know how your wife was 'lonely' at the care home. Most dementia patients only seem to know the moment and one minute, because she doesn't see a familiar face, she could be 'lonely' but the next not. 'Lonely' may mean 'unfamiliar'. My sister fought tooth and nail to stay out of a home and once in, complained bitterly about everything wrong. Some people just dont adjust easily to change but even she got used to it and became quite active after a few months of grumbling.

    If you are like I am and now given to some bad words and submerged resentment, of what use are we to those poor souls? They are just made to feel bad but with dementia...at the moment. When she is surrounded by people whose job it is to be patient with her and take care of her and those people get a chance to go home at night, they have the luxury of acting kindly toward her. She needs kindness and not }#€¥*% and resentment.

    The important thing is to know the facility is good and caring and competent. Give her a break at first and don't keep going over to remind her of where she was before....just like sending a first grader to school...they don't let mothers show up all the time at school or camp-it is too disruptive to getting the child settled on to a new reality.

    After all, that is what she would face if you weren't around.

    Above all, when you do go to visit and she can tolerate you being there without disturbing her, DONT ASK QUESTIONS of her. They can't remember how to answer and it makes them feel worse! Just speak in statements. Not, 'how are you doing?' But 'you look like you are doing well.' Not, 'do you want to go for a walk' but ' we are going for a walk now.'

  • Hi lazyrideruk, not often do i feel a sense of anger and sadness and many other things all at the same. I can only feel sympathy for you and aye, pity to. There is no love left in your life, and that is why i feel pity for you more than any other reason, and as for your 'health care?' it nothing less than a crime scene, but then, there is a lot about. I'll be honest with ya, i came here to learn things to my sisters and my own advantage and so many help me. They teach me what not to do, and how not to think, So i thank ya.

  • Oh lazyriderUK, give yourself a break. If you can afford it get your wife into a home where professional help is available 24 hours per day. Take your time to find a good one though.

    I suggest that any guilt on you part is not warranted and I find it difficult imagining any one else who would expect more from you. No you have done enough already. Give yourself a break.

    I note she has been unhappy staying in care homes. I wonder If she can be settled if you are allowed to stay with her perhaps just for a few days until she has become familiar with the new place.

  • Hi Rider. I think you've answered your own question ... maybe a sense of guilt keeps you from doing what you know you must do to prolong your own life and find some peace? I say, follow your instincts. You've done all you can do to support and care for your wife. If you run yourself into the ground, both you and your wife will suffer the consequences.

    Your message hit close to home for me because I went through something similar -- not the same but similar -- when caring for my dad. I felt terrible but I had to cut back on the care I provided for my dad because I was drowning in stress trying to "do it all" for both him and my kids. Stress plus guilt can really wear you down!

    BTW, I always (ignorantly) assumed that in the UK, the NHS provides the services you're talking about -- plus so much more, gratis. Shows what I know!

    Please do keep in touch and let us know how you're doing.

  • The NHS provides medical services but it does not provide Care services, unless you have assets of less than £23,000, then it will pick up the Care home invoice, but you have to go into the Care home of their choice.

    Most of you have picked up on 'guilt' - my children think the same. But as I explained to them; putting my wife in a Care home will be in effect cancelling out all her previous life - all the things we have gathered together and what she is familiar with, the ornaments, pictures, clothes, garden, furniture, etc. etc.

    I am presently enquiring about weekend care from 8a.m to 7p.m both Saturday and Sunday. This will more or less give me the weekend off and allow me to get out on my motorbike and meet up with some friends.

    I do appreciate all your comments, they have helped.

  • I am feeling a lot of empathy for you. The situation you are in is definitely a "Catch 22".

    It is so easy to mistake our feelings of sadness for guilt. Please try to remember that sadness is a feeling while guilt is a judgment. We want to make situations different from what they are. See if you can get some rationality into your thinking. You can do this if you take each of your thoughts and ask yourself if the thought is (1) true (2) false or (3) you don't really know. Think of it like a legal trial. Can you provide proof for what you are thinking?

    I don't know what is right for you but take time to get all the help that you can. Acting on "duty" is not a good idea. Do your best to find the "love" and act on that. And remember we can love a "4 year old" and not give them what they want.

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