This might come across as quite selfish but I want to be honest about this and ‘get it off my chest’ I used to be in the British Army and settled in Nottingham which was my last posting. Both my wife and I (only children) come from Bristol, approx. 150miles away. When my father died in 2003 it hit my mum quite bad and she went into a depression so we decided to move back to Bristol to be near her and to think about starting a family (up until this point we’ve been married for 17 years so we thought it was time!!) We moved in 2004, daughter born in 2006, son in 2008. We regularly visited my mum who still lived in the house my dad passed away but wanted to move. She was quite desperate and was looking at the worst places. Where she was all her neighbours have moved away and then properties were all rented so it was a large transient area, Professionals working 7-5 and not coming out in the evening so my mum never saw anyone… She used to use the phrase ‘its like being buried alive’ a lot! Anyway we saw a property with an annex attached. We approached my mum and after a bit she said yes (she kept thinking ‘I would I cope’!). We all moved in in 2009. Fast forward to now… and we want to get out! That sounds harsh but the feeling of being buried alive has now transferred to us. A lot has happened in those 9 years but the main things are: she doesn’t like being alone, even for a few hours and just moans about it and when we (wife and kids) go out she gives us a guilt trip that she’s not coming with us. Up until recently she did come with us but her mobility is now really bad if she comes with us for a day out… all we end up doing is sitting in a café! For my 40th (2010) we all went away to Florida (my mum and the in-laws) and it was really good but now my mum expects to come on all our holidays, even though she goes off with her sisters for her own holidays. Last year we talked about it and she said she didn’t want to come but then a few weeks before going she blamed us for not including her saying that we never asked her. Small things have been happening recently that, to me, could be tale tale signs of something bigger… She is 85 years old and has only just given up work. She used to work as respite care. I think one of the reasons is that she found it hard finding where her calls were, which is understandable. Now however all she does it sit in her chair watching endless re-runs of ‘Murder She Wrote’ or ‘Columbo’, mostly with the sound on mute! She only eats ready meals or meals that we prepare her as she now burns all her food. She tries to cook cheese on toast or warm a pasty in the oven, sits down and forgets it. We are constantly having the same conversations, sometimes within minutes on each other and when you talk to her you can see her ‘glazing over’. Her hearing is very bad but she refuses to have a hearing test “What good will that do!” is always the answer… This week we all went out for a meal for my sons 10th birthday. She had prawn pasta (forgot the name of it) and it was made with a slight chilli butter sauce. At the start of the meal we asked what’s its like and she was happy and replied “ooh, this is lovely!”, then within 15 mins her mood changed. She claimed she only had 2 prawns in the pasta and just kept picking at her food trying to find more. (My father in law had the same and had about 7-8 I his!) My son, who was sat opposite her said “but Grandma I saw you eat at least 3” he was shot down by “no you didn’t, stop lying!”. She then went on to say “That was a horrible meal and I only had 2 prawns” and that was it she had a face of thunder..!! Which made for a lovely atmosphere for all of us.. The main issue we have now is my daughter was recently diagnosed with Autism (Asperger’s Syndrome) and from my sons actions and personality we think he may be on the Spectrum as well (not diagnosed). Now we want to do something while we still can but feel we cant because of my mother... A few years ago my wife had the option of working abroad, either in mainland Europe of America for a couple of years. I mentioned it to my mum and she said “why would you want to do something like that?” we knew she wouldn’t like it she we never did it, and regretted it. I even mentioned about working and living overseas but that has fallen on deaf ears and all she thinks about is “what about me?” I don’t think she cares about me, what I want, or what my family wants. I feel quilted into staying as I’m the only child but my cousins are allowed to do things… One of her sister (my auntie) has 2 sons, one now lives in New Zealand, one in Australia but in my mums eyes that’s fine but because I’m the only child I have to stay! My feelings (and my family) is to sell the house, buy my mum and apartment in a care home or an assisted living complex and then we can do something.. I feel this will be better for all of us. We are starting to resent my mum (which I hate feeling that) as we can’t live our lives or do anything as we wil
God bless you and your family. It is a powerful message for us all.
I am a patient diagnosed with Dementia, possible early onset Alz just shy of two years ago. I pretty clearly sat down immediately with my family and told them, when the time comes that I need to be institutionalized, I expect them to do whatever is necessary to take care of their own families, not me. I also told them not to give my DW trouble as she goes forward with living her own life. My DW is 8 yrs younger than me. I am in my late 50's. My four kids range in age from late 30's-11yrs old.
I believe you have done a lot for your mother. Our youngest child was diagnosed with a very rare genetic disease when she was born, so she to is a special needs child. We've done everything we possible, setting up a Trust in the name of my DW, moving all of our property in to it, DPOA's, Med Directives, Pour Over Wills, etc with an Estate Law Firm, we then had what was done looked over by a specialist in Elder Law who found everything that can possibly be done, was done.
Yes, make the best arrangements that you can make for your mom to live out the time that remains for her hospitable, comfortable, and in the care of professionals and place her in the Lord's Hands.
I received some advice many years ago from a Priest. Now, your responsibility is to YOUR FAMILY. THEY SHOULD BE YOUR PRIORITY. Having Special Needs Children is a gift from God. We believe ours was placed in our care because God knew she would be well cared for. The same is true for you and your mission is to make their life full of great experiences with you and your DW.
I recommend that you and your DW do everything possible to immediately put your affairs in order and do everything possible to set up your future legal paperwork so that there is no question as to what you and your DW want, and how you want things to be taken care of for your Special Needs children, if you have not already done that.
Now go enjoy life with your family, you and they deserve it!!!!! I hope this helps any who read this. God Bless your family.
I finally got my mother in a nursing home because it was getting too dangerous for her to ever be alone and I had no life of my own. That helped a lot, even though it was still all up to me to do any visiting or oversight of the facility's care of her.
For the one who thinks your person is just getting really mean, that IS part of dementia or Alzheimer's. Several months after getting my mom into a very nice nursing home, I got a visit from the police. They said Mom had called to report that I had stolen all her stuff and move to Colorado. I invited them in and asked if they would like to see her "stuff" since I still had it all there and obviously had not gone anywhere. They said the kind of already knew that, but were required to follow up on her call. That hurt really bad. But you have to realize that is not the real person that you know and love doing it. It is the disease or dementia..
After Mom passed away several years later, my mother in law was diagnosed with cancer and I spent the next two and a half years taking her to her treatments and trying to help, even though she had a sister living next door to her and a daughter.
She passed away two years ago. I spent the next several months settling her affairs. Ten days after that was done, my older sister had a severe stroke. I am the only one left to help her. I nearly drove myself to the grave trying to be there for her 24/7. She has no desire to do anything for herself to make things better. Finally, her doctor looked at me and said if I didn't get my sister into a safe place, I would wind up in the hospital. She is in a nursing home now. She is still very demanding, but I am learning to establish boundaries without guilt. I put my phone on do not disturb for at least an hour every day and overnight. I set aside an hour every day to do what I love without regard for anything else going on. I am finally relaxing enough to bring my blood pressure down and enjoy friends that I have been missing time with. My sister is well cared for and lacking nothing. When I visit her, I keep it short. Once every other week, I go and we go to the chapel where I play the piano and we sing. (We grew up singing together with my brother.) That helps us both, and the other residents enjoy it as well.
Let go of guilt. You deserve a life and your spouse and children deserve your time as well. It is not cruel to get your loved one where they can be well cared for without taking all of your time and energy.
But if she agrees you MUST at some point also ask her if she wants to speak to the doctor alone while you wait outside. Ask every time, during every appointment, otherwise you risk unintentionally isolating her.
For the LPAs - download and print the packs. There are important questions contained in them that might help her appreciate that they're a good idea for her, too - for example, this is where she gets to say officially "don't you put me in a nursing home you ingrate mongrels - !"
Don't worry, there are ways round that one too :)
We haven't got my mums POA.. We have mentioned it, either for us (wife and I) or one of my aunties but she won't listen.. its in one ear and out the other...we'll keep trying though.
I haven't had chance to see the doctors yet (work gets in the way) however my mum had the test last Wednesday (as mentioned above) and the docs phones to ask her to book an appointment to discus the results on Friday. She's off on her hols with my aunties this week so its booked in for next week.... I keep asking if she wants me to come along..
Shed your guilt! You are doing the best you can, and that’s all you can do.
To have the right to make medical decisions for her *without her permission* you have to have an enduring, durable or lasting POA, AND she must have been formally assessed as lacking the mental capacity to make these decisions for herself - as, for example, your husband would have been, owing to the damage from his strokes.
But a person of sound mind can give somebody the authority to act on her behalf, or to be given confidential information; and in that case POA does not give you the right to act without her agreement.
Very best of luck. And stay strong.
;) There is a "but." Several, in fact.
Now. We are entering on a slightly grey area, here; but how much information you will be able to get your sticky paws on depends on a number of factors, 1-3, together with a little bit of fancy footwork around ethical guidelines and some fast talking.
1. Your mother's permission. If you call the surgery and have your mother there at the time, you can hand her the phone and ask her to tell the practice administrator that the doctors have HER permission to share her medical information with you. Assuming she agrees to this (and if you keep it casual she probably will), you're in - unless the practice is unusually on the ball and insists that you both complete the paperwork.
2. The wonders of email. If you give the practice your email address, or the family's email address, or even your mother's email address if she has one, they will - again, should be only with her permission but you'd be surprised how often that gets by-passed - forward test results, letters and reports on request. Only, be sensible and don't overreact. When you get the computer file you will very likely see all kinds of alarming highlighted sections, warnings and exclamation marks. All these mean, usually, is that a particular result is out of standard range. They do not mean your mother is about to turn her toes up, they just give you pointers about what to ask her doctor.
3. The level of professional competence of the person you are speaking to. Your average receptionist is a capable, helpful people-person. The ones who actually have a good, clear grasp of confidentiality and data protection in practice are rarer. Even today you still come across plenty of well-meaning, naive souls who think that you mustn't give people confidential information unless they are the patient's spouse, child, parent, concerned neighbour, person giving a plausible reason for wanting it... But it's an ill wind blows nobody any good, and sometimes their failure works in your favour. Make the most of it!
Ideally, go physically to the surgery.
Register there as your mother's primary carer. General Practices have to flag carers, and you will get cut all kinds of slack if you are named as one. (You will also get a free flu jab. Hurrah!)
Next, when you speak to them, explain that your mother's blood test results are pending and that you are making an appointment for her for when they come back. The administrator should be able to give you a rough idea of how long that might be; whether or not the practice will let you make an advance appointment is different, some do, some don't; but at least you'll know broadly when it'll be.
You then say to your mother "you've got an appointment due in [when], and they think it would be a good idea if I came with you. Is that okay?"
Now. Suppose she gets huffy and says it's none of your business and this is all private and how dare you. In that heart-sinking case, you are going to have to sit down with her and have a serious talk. About obvious things, such as that she's your mother and you care; but also about less obvious things such as that she lives with you and her welfare is your responsibility - so you do have a right to permission from her to let you fulfil it. You may also want to go the OPG website (make sure it's the official gov.uk site) and download their "LPA for Health and Welfare" pack. As well as the necessary forms, this includes lots of information and helpful guidance to doing the job properly.
How is she doing, meanwhile, anyway? Thanks for updating us, hope things are going better than they were before.
1. Antidepressants helped my Mom tremendously. Think about it. She is at the stage where she is recognizing that there is something going on, but can’t accept that it is her brain doing it. In all her life, her brain has never let her down, so why would it be now? This is scary for them. Majorly anxiety producing. An antidepressant with an anxiety med gave my mom a huge amount of relief, without her even knowing. (At first we had to sneak it into her pills because she would have refused to take it, after all, she felt there was nothing wrong with her. It was all US.)
2. Does she enjoy ANYTHING other than tv? Can you get her to engage in any other type of hobby? This worked for my mom for about a month before she lost the ability to do other things. We have spent the last 6 months watching tv all day and night.
3. As for travel, could you possibly schedule a trip for her to visit family while you and your family go on your trip? My mom doesn’t travel, so I haven’t gotten to go on a family vacation with my husband and son for the last few years. I resent this tremendously. If I could redo this, I would. It is important for you to have some independent family time. I would flat out say that you need some time to have your family as it’s own unit, and she gets to visit with ______.
3. The mean statements and insults are, I believe, a way to get a rise out of you and engage in some mental sparring. This was THE HARDEST THING for me to do. Just agree or placate. Yup... or I can see why you think that... or even sorry you don’t like it... then change the subject immediately to something that interests her and engages her mind in a positive. My mother loves to argue and/or see the worst in everything. “Oh, that’s just terrible...”is a phrase we hear multiple times per day. Once I learned to placate or just plain ignore the negativity and change the subject, I became a must less stressed person!
4. Resentment. I have A LOT of this. My mother made me her POA and stated in her legal documents that she was to be kept at home up to and including hospice. In other words, I am not to put her in a facility of any sort. This means that I am bound to honor her wishes, sacrificing my own life and career. My brother is able to continue in his merry life, 400 miles away. He was always favored by her and to this day he is the golden child. (Some things never change!). But you are going to have to let the resentment go. You can only control your feelings and reactions to her actions. Don’t let it get to you. You are doing all that you can for her, and you still deserve to care for yourself. Your mental health is just as important. Consider seeing a therapist for coping strategies.
I hope my experiences have helped in some way. Even if you just understand that you are not alone and all of this is normal.
Good luck
Thank you for the update. Good for you. I hope the doctor will work with you to help your mum. It's hard, but you are doing the right thing.
Well my mum went to the doctors today for her blood test.. I asked her what happened and what was said but all she said was.. "they just took my blood and I should hear in a few weeks.. if I don't I should phone", "don't know what they are looking for though?'
This is one of the issues we are facing. The doctors probably said a lot more but she's not telling us 'oh everything is fine!'
I will try and contact the doctors this week to see if I can talk, or meet, with someone to discuss this and ill let you know what happens...
She came to me for Easter last year and, ( I’m an artist) looking at my new work, she scoffed and said “who in their right mind would buy this “ ! That sort of thing. She got even nastier right at the end, telling us we were useless daughters etc
she is perhaps frustrated, confused, angry etc about being old or something.
I found that my mothers comments and behavior did get to me and I had to put up a barrier of sorts, and certainly, I had to consider my children
We were also told that the nurses are there to do the nursing and there are councilors and doctors for her depression , seems she needs help with that
But that’s not your role.
You can’t fix it, you can only try to make things as smooth and comfortable as you can - for everyone - for the greater good of you all.
All the best to you and your kids and your mother
If you have questions about the memory assessment your mother's GP will probably have done, why not call the surgery and ask for the GP to give you a call back at some discreet time.
It was a bit dim of them not to address the mobility issues at the same time - why annoy and puzzle your mother if they didn't have to? But never mind. The main thing is that they took your concerns on board.
It is routine to take bloods; it's a useful way of ruling out all kinds of things and getting a picture of what's going on with her general state of health. They can check for "cardiac events" (small, silent heart attacks that could have gone unnoticed), infection, anaemia, problems with liver and kidney function... the works, basically.
Your description of the vanishing prawn saga hit home with me... It may be that changes in her brain are leading your mother to develop clinical depression. Her negativity and apparent selfishness aren't her fault. They're not your fault either! But it isn't that she's a different person from your lovely mother, it's more likely that her brain structure and chemistry are playing horrible tricks on everyone.
Plus, of course, she still misses your Dad, she's still had to retire, she's still getting old... It is, as they say, definitely not for sissies.
Being in Bristol you do have a huge range of options for your mother's ongoing care. Lose the guilt, it doesn't help anyone, least of all your mother. Let us know what the GP says and what the plan is beginning to look like. Best wishes.
Well a quick update.. My mum had an appointment to see the doctors today to up her dose of painkillers for her mobility (but apparently she has no pain!). Well I took advantage and went up an hour before to see them. They were good (I think), I explained my worries and concerns and asked can they assess her 'without seeming as though they are assessing her'... if you know what I mean... Well I took her, waited outside (she wouldn't let me go in) and she came out she said "they won't give me any, they said thats not the problem and I have to go back for a blood test". Is this part of the assessment process??
Your first priority is your children and family. Your mother might not understand that anymore, but that shouldn't change your priority.
"I feel this will be better for all of us. We are starting to resent my mum (which I hate feeling that) as we can’t live our lives or do anything as we will upset her. I think at first it will be really hard but feel that if we get the right place she will be more active and cared for. Instead of sitting in front of the TV moaning about everything she might actually get involved in activities with people of her age and interests..
I know it seems like I’m getting out when the going gets tough and that’s exactly how I feel, I’m abandoning her, but due to my children’s condition I feel they are now my priority and I have to do what’s right for them.. In a horrible way (I told you I’m being honest) my mum has lived her life, and she really has had a great life but now we are wasting ours because we don’t want to upset her… "
I think my first avenue is to talk to one of my aunties as they are quite close and she has the same thoughts as me eg its our holidays and my mum shouldn't be coming etc... and explain my feelings to her...
I wholeheartedly agree with Barb. No one can accuse you of not taking care of your mother. You've done your duty and now it's time to devote yourself to your own family. Take those holidays and make those memories for your kids. Don't sacrifice it all for your mom. Don't sacrifice your family to make your mom happy.
An assisted living sounds like a great idea.
You did the right thing coming here and 'letting it all out' That was a great first step.
I am totally understanding of the meals situation. Although I had one of them from my MIL and one from my husband (he is my physical carer - and I am his mental one) little bit complicated but I sure get it.
Do you have any British Legion places near you. As ex military they will offer good advice.
Here is mine and I hope some of it helps. Others will come here and give more.
Day centres. Home help (not to clean but may be use her time to have a sandwich with your mother.
Find her a club to join. If you plan it well, most of the week will have some stress relief for you all. Church - they have clubs, days out, meal etc. She can go there for the company and to share her wisdom.
Food.
Batch cooking. Put a load in your freezer and defrost. Dont tell her you froze them - after all you did make them from fresh. Meals on wheels will come anywhere if you have them in your area. BUT check if they use fresh veg etc, as our local one uses frozen.
Time out.
Once you have some of the above arranged, print out a rota. Stick to it. Get her to a little hair dressers once a month also.
Holidays are more difficult.
Here you will have to be firm. If you WANT a family holiday with you and yours. Tell her.
I have a grandson with Asperger’s Syndrome. This can come in a variety of symptoms. But is manageable and he is a lovely caring lad. So I sent you lots of love for your daughter.
Keep coming here to vent - it will help a little. And the good people here are very caring an knowledgable. I am sure you will get great advice.
Take care of yourself, your wife and your children. Look out for your mother - wit h love.
Buzzy
ps I am not very good with words but I hope you can get what I am trying to say and help with. :)
Please let go of the guilt and shame, first off. You are NOT selfish for wanting to do the best for your family, especially your children. In my mind, obligation goes down the generations, not up. Your primary responsibility right now is to your children. Then your spouse. Your mother is a distant third. (It was my mom who drilled this into me, obtw).
It sounds as though there is some cognitive decline going on, which may or may not advance. The thing is, the sooner you get mom settled in a supportive environment, the better she'll settle.
She sounds quite depressed as well. Can you get her to a geriatric psychiatrist or neurologist to assess her mental health and cognition.? Don't accede to her defeatist attitude. What good would it do? What, you're a qualified doc, mom? You know what treatments are out there, do you?
Read up on Fear Obligation and Guilt (FOG). It's how your mom is manipulating you.
More later, off to work now.