Sep142009
My Lovely Mum …
Filed under Life etcetera, et al by The Soaplady at 1:09 pm on Sep 14 2009
My mum was the eldest daughter of a well-to-do family in Grimsby.
At the age of 15, she took up a scholarship to the local Grammar school, on the basis of her own talents. This was a big deal in those days …
Having finished secondary education, she then sublimated her own future within the future which my father offered to her …
On her wedding pictures she looks like a princess …
She had three daughters whilst moving all around the UK with my fathers work …
I remember her best aged about 42, myself being around 10 years old, and my two sisters being 4years and 6 years …
She taught all of her daughters to read and write well before they were required to learn how to do so, in school, preferring to make her own educational materials and teach us on the living-room floor …
She was a big woman …
Always with her sleeves rolled up in the kitchen …
She gifted to all of her daughters a love for books and reading … To this day, we all read like demons, and enjoy the feeling of being taken away from life for a little while, to a world formed by our own imagination …
She smoked Consulate menthol cigarettes through all of her three pregnancies, before it was fashionable to stop smoking whilst pregnant … None of her daughters weighed below 8 pounds at birth … She gave up smoking at the age of 45, and never once smoked again …
She is 77 years old now, as is my dad …
Whilst he is still active with his own work life, my mum is losing her marbles …
At first it just manifested itself in a bad memory, which we thought nothing of because both she and we have always been characterised by a slight confusion, and ‘getting the wrong end of the stick’ …
She still completes many crosswords satisfactorily …
She was diagnosed as having dementia last year, and was given the drug which sounds something like Erecept, designed not to treat the fault, but to halt its progress …
It’s a sad victory really, I decided to myself at christmas, watching my father trying to help my mother tell the time … Talking about the little hand and the big hand …
If he’s out of the house, she does not attempt to feed herself … Whereas in her younger years she weighed around 13 stones, now she flutters around the 6.5 and 7 stone mark - this is a problem …
If people come around to the house, she doesn’t know who they are, and it frightens her …
She still reads voraciously, but I suspect she can no longer follow a plot, and often does not know what she has just read.
I believe she knows what’s happening to her … She can feel it … and this often makes her agitated, and hostile to my father, who still quizzes her on where she put so-and-so, and still tries to argue rationally with her …
He will never get over the loss of his wife, or be able to deal with her in the new softer way which is necessary …
Neither does he want to give up his own life, and the commitments that go with it so that he can be at home with her 100% of the time.
I feel that I should be doing more to help her … If I didn’t have my business here, maybe I could visit her more …
One of my younger sisters who lives in the same City does what she can, and keeps me informed about how its going …
But really, it’s obvious that mum shouldn’t really be left on her own …
How do you feel OK about putting your own happiness and comfort in front of that of your parents, when their health is failing …?
In the old days, children would look after parents … But in the old days, they lived very much nearer than these days …
In my heart of hearts, I don’t believe mum would appreciate me giving up my life here to support her … That would be putting the guilt onto her instead of me, wouldn’t it …?
I write her a good long letter almost every week, which she likes, I’m told, and I try to say at the end of it just how much she means to me, and how good a job I feel she and dad did with me …
I see my parents only for a week, at christmas, thus far, but I am now trying to plan for a couple of days break with them at other times too …
She’s in Hospital just now - they’ve taken her onto a respiratory ward for a couple of weeks for intravenous drug treatment to try and sort out a long-standing chest infection. That’s good for my dad because it gives him two weeks of respite rest …
But she herself doesn’t know quite why she’s there, and each time she’s visited, she maintains that she’s ‘going home tomorrow’ … She can’t work out how to switch the television on, or how to put on the headphones to hear it with, regardless of how many times she’s told.
She’s convinced that people on her ward don’t like her, because they don’t include her in their conversations.
The majority of nurses on the ward are not even aware that my mum has severe dementia, despite the fact that it’s in her notes, and her daughters having pointed it out to the nurse in charge several times, so she doesn’t get the help she needs.
Her co-patients report that she wanders to and fro in the ward, and cannot settle down.
I’m sending a little parcel to her tomorrow with a few luxuries in it, and a letter. What I really wanted to send was myself … But commonsense dictates that I should wait a couple of weeks before she’s discharged, so I can be with her at home.
In her lucid moments (and there are some), she cries because she realises what is happening to her. But all too soon, the alter-ego mum is back, and there is no understanding there … I don’t know which is best …
It seems to me that dementia is the cruellest of all diseases, for the family anyway, because effectively, you suffer all the feelings of bereavement and loss - let there be no doubt about it - I have lost my mum - only the person is still there, always becoming more and more of a stranger to you, and there is absolutely nothing you can do to make it any better for yourself, or them.
The biggest question that I don’t seem to have the answer to is:
How many times will it take for me hugging my lovely mum,
before it feels like it’s ‘enough’ …?
1 taddoeon 14 Sep 2009 at 2:05 pm
So sad,soaplady–I really feel for you. I hardly stayed with my parents,as I was raised by my grandparents and they lived a vey long and very thankfully healthy life. A lot of my friends parents have dementia/alzheimer and I have being working in the retirement unit of our local hospital since 2007(as you know)and since June this year I have been alone in charge (with a cleaner/helper)in a secure unit for alzheimer patients and I feel very sad for their families as often the family feels guilty having put their loved ones there,but it is,in the long term the best place for them: Ouch:I know a lot of people don’t agree,but where I work,we try to get the patients to participate in daily chores–setting the table,or clearing it,wiping it down. In the afternoon games to help stimulate/keep what lucidity they have left.Some times I come off duty,shattered and cry when one of them leaves(dies)as if you love this job as much as I do you cannot help but get involved and come to love even the grumpiest old so and so,who may even hit you because they don’t know that its bad anymore.your mother knows you and your sisters and father love her,even though she may not be able to communicate anymore. Please don’t feel guilty,just continue to give her your love and also support to your dad.xxxtears are pouring down my cheeks
2 paton 14 Sep 2009 at 2:30 pm
A very sad story, but one that seems to visit more and more of us.
Dry your tears taddoe, you are doing a great job.
3 Jillon 14 Sep 2009 at 3:31 pm
I’m so sorry, SL. You have my fullest sympathy, as I went through the very same situation. The only thing I can say is that as your mum gets worse, the situation may improve a little, if you can conceive of such a thing: a) she may need residential care, which means she’s being looked after and is safe and can’t “escape” from the house, and is less strain on your dad, and b) she will become less aware of her circumstances so will be less distressed. It’s a tragic loss for everyone involved. I’m thinking you a good thought as I write. Take care.
4 ALZ (US)on 14 Sep 2009 at 3:50 pm
I’m so sorry you are going through this. My mother moved my grandmother in with her and took care of her to the end of her days. My grandmother didn’t know any one during the last 10 years of her life. Now only 6 short years later we see the same things in my mother. My sister is moving in with her to take over her care. Mom still knows everyone, but is easily confused. The new drugs on the market help some but they cannot stop the march of the disease or the march of time.
As for your last question…. you will never feel that you have hugged your mother enough or that you were able to do enough for her. It’s human nature for us to want just one more hug, talk, smile. I’m a long way from my mom and we only see each other once a year so I understand your plight. My mother and my grandmother before her were independent hard headed hard working women. To watch them lose who they were is heartbreaking. In their moments of clarity they know they are losing themselves and as much as we long for those moments I think it’s harder on them.
This may sound strange, but we have found that talking to a grief counselor helps. Talking to one has helped my family understand this process so much better. Because as those we love loose themselves we grieve for them continuously. We feel helpless and hopeless. Talking to someone has helped a lot.
Keep a hold of those lovely thoughts of your mom and talk to her about past shared experiences. Sometimes the far past is closer for them then the recent past. My thoughts are with you.
5 Cathyon 14 Sep 2009 at 5:13 pm
My mum will be 92 in November. She also has dementia. It got really bad after my sister died (her first born). At the time she was so strong for my younger sister and me. It was if she knew she had to take charge and didn’t break down once. We visited the hospice. I could hardly see to drive home for the tears nipping my eyes and running down my face. When we got back, she took over the phone calls. The week before she couldn’t remember how to use the phone. She seemed to be protecting us, (her two late weans) as she called us.
About a month later she was really bad. She kept leaving the house in the middle of the night. We had to take the decision to lock her in. We had to keep her safe. The cooker was disconnected for safety reasons. This was dreadful as my mum was a cook and a baker. She couldn’t understand why she couldn’t get the cooker to work.
We seem to spend our time lying to her. She keeps asking if we have seen her mum,gran,sister. The answer is always they are away on holiday just now. She can be great for a few days and back to her ridiculous sense of humour. My mum’s back then.
The bad days are more often now. She doesn’t remember our names or where she is. God bless our home helps. We couldn’t function without them, as we are both at work. She also has a couple of days at the Altzheimer’s Club.
The beautiful baker,knitter, babysitter is only a wee shell now, compared to the big strong woman she once was. We pray that God will take her soon, and that’s a terrible thing to say about your mam.
If you have been in the same position as we are, you will understand that last statement, but for now at least, I’ll answer to Cynthia?, my sister will answer to Nellie and laugh hysterically on the days she has her humour back.
6 thelandladyon 14 Sep 2009 at 5:48 pm
I had a very similar experience with my old mum, who died in Dec 2006. Mum had very little grasp of time, days of the week etc and was beginning to not recognise her grandchildren but died of a massive stroke before it could get any worse, for which I’m eternally grateful.Luckily she retained her sense of humour to the end, which was a blessing. My dad had died many years before, so he didn’t have to see her demise. I always felt it was as if she was slowly moving away from me , on a gentle but inexorable journey to another place, one where I couldn’t follow..
One thing I would say, Soap lady, is that it destroyed an already fragile relationship with my sister. She resented the help we put in place for mum, felt ” put upon ” herself, yet seemed unable to accept the help my brother and I offered, which had to be from a distance. In the end she appears to have used Mums dementia to do something which neither my brother or I could forgive, which I don’t want to disclose. Keep communicating with your siblings, it’s vital…and never feel guilty for not being physically there all the time! I’m sure your mum wouldn’t want you to neglect your business. I’m always comforted by the knowledge that what ever mum forgot, she always knew I loved her, and when she died I never felt that there was something I omitted to tell her. She knew, just as your mum does, that I loved her.
7 taddoeon 14 Sep 2009 at 5:57 pm
agree with landlady it is IMPORTANT to communicate with your sisters as i have seen at the home,sometimes there are great friction between the children and the parent/s concerned seem to sense this and it confuses them even more. Its not the fault of one of the children or one doing more than another-the essential is to go on loving the parent/s and each other
8 Soapladyon 14 Sep 2009 at 6:27 pm
Thanks everybody for taking the time to tell me your own experiences - it *does* help … :- )
There is *huge* friction between my family just now because my dad belongs to the generation that doesn’t say much about their feelings, and this often gets interpreted as ‘not caring’ … I spend my life as the ‘go-between’ between factions, due to my location and lack of physical involvement.
My own feelings for my mum and the pity of her condition are breaking my heart at the moment, which is why I blogged on what is a very personal matter - I hadn’t thought of grief counselling but having had it mentioned here, perhaps I shall consider it more …
I cannot sell up and go home, but I must … That’s the conundrum I have to deal with sooner or later, and the guilt which accompanies either way.
I hope I haven;t caused anyone grief … :- )
9 GravirLifeon 14 Sep 2009 at 11:04 pm
Soaplady…..thank you for sharing what is a deeply personal and painful moment. I hope some cathartic benefit can be gained by simply writing/telling it. I,like you and others here, have a similar story….my Mum (who was deemed not fit to keep her kids at various stages) has been very ill from time to time (several times I’ve driven from Somerset to London to rescue her from hospital/social services) and then my one of my sisters took the mantle but we all fell out over that….etc (won’t go on here) but the the thing I do know is I am prepared for whatever the Gods will and whilst my Mum is fighting her corner and the rest of the world, I will accept what is meant to be. I sincerely hope you find the strength and peace to cope with whatever you have to with whatever support ( I work with Cruse…Bereavement Counselling so recommend) I only wish for you and your Mother to find Peace and Love…..regards…..RJG
10 taddoeon 16 Sep 2009 at 1:25 pm
SL: please ,think carefully about selling up and going back home.This seems a cruel and perhaps selfish statement,but after what will you do when mum isn’t around any more??Continue to give her,and your family love and support,god bless
11 judeon 16 Sep 2009 at 2:22 pm
I agree with taddoe. Having spent my working life working with the elderly the emotions that you are experiencing are what most caring families go through. I think the best piece of advice I can give you is to remember that it is not only your mum going through this but also your dad and the rest of your family.Try to arrange for your dad to get regular breaks either through respite care or other family members. Best wishes
12 Flying Caton 16 Sep 2009 at 8:22 pm
I agree with taddoe Soaplady. It seems to me that giving up the life you have built up wouldn’t help enough to justify what you will have lost.
Guilt, like hatred, is one of the most corrosive and unconstructive emotions Please don’t let it take over. You can only do what you can do from where you are now. *furryhugs*
13 Plaidon 17 Sep 2009 at 7:18 am
I can add nothing to the above, except to send you loving thoughts to sustain you. Often a ’solution’ arrives unexpectedly … in a shape or form unforeseen.
14 taddoeon 17 Sep 2009 at 7:57 am
Agree Plaid,I have found ,in the past when everything seems “impossable” all of a sudden there is an answer.Hopefullysoo, for you and your family,that answer will come soon.xxxxcourage;
15 Barneyon 17 Sep 2009 at 3:43 pm
Soaplady, this is such a personal thing that I’m sending you a private mail on the subject. But your situation is made in some ways harder by being so far away, and yet in some way easier, because you are spared the pain of not being recognised. That of course is not comfort. I feel for you and for you family.
16 John in Norwichon 20 Sep 2009 at 11:59 am
So sorry to hear of your troubles, Soaplady. Now your Mum is in hospital, she should have her needs assessed before going home. Try to get a social care plan for her. I expect she will qualify for an attendance allowance to defray extra costs.
Pay regular visits and give your Dad breaks but keep your business, otherwise when she is gone it will be hard for you to start again.
Best wishes
17 Harryd(Canada)on 26 Sep 2009 at 2:06 am
Just returned from Scotland and read your blog SL. My heart goes out to you. I visited my folks grave when I was there and the sadness i feel is still strong. My Mum had dementia and one of my happiest times was funnily enough when i visited her and Dad and took them for a drive. During the drive my Mum sang scots songs for ages and as she was a quiet wee woman I was surprised but happy. The next day I said to her. I loved your singing yesterday Mum and she was adament she never sang the songs. I’ll never forget that day. All the Best.
18 YvonneBon 28 Sep 2009 at 6:27 pm
Thinking of you my lovely and sending virtual hugs. Always so hard to see someone you love going away from you. I’ll ring you when i’m back in the UK after the 8th Oct. Y xxx