New here: What can I expect?

Discussion in 'I care for a person with dementia' started by murrill, Jul 28, 2015.

  1. murrill

    murrill Registered User

    Jul 28, 2015
    My Mother was diagnosed with Alzheimer's one year ago, and she has declined significantly since then. My Father is the primary carer, but I am very involved, too.
    Mother has a multitude of other health issues that confuse matters, including spinal stenosis, COPD, and significant hearing loss. She is resistant & noncompliant, and I cannot imagine what is ahead of us.
    I know that she is frightened and depressed. I should admit this: We have never had an affectionate relationship, but I am here for the duration nonetheless.
    I stayed with her over the week-end while my Father was away. Really, he needed a break. Last night she left the water running in the bathroom sink, so there was a minor flood. I doubt she ate 300 calories over the three days. She doesn't want to take meds. If this is "early stage, " what comes next?
    This is my observation: Some of the behaviors are not new; it is what I have seen for a lifetime, but on MiracleGro. She has always had hoarding tendencies, but it is out of control. She refuses to let go of anything. She accuses my Father of going through her things. And tonight I bought her first box of Depends because she has had diarrhea so badly she has no clean underwear. She refuses to let us put hers in the wash because she doesn't want us to see that she soiled them.
    Is there ever a period where things level out, where it is more manageable? I am sorry if I am whiney, but I really do not know where to take this.
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Good morning Murrill and welcome to TP.

    I'm sorry to hear about your situation. It sounds as if things are pretty hard for you and your dad, and indeed your mum. I think it's often the case that a person's personality traits can be exaggerated when they have dementia.

    I wonder if you have any support in caring for your mum. It sounds as if you both need it.

    In the first instance it might be helpful to have a chat with your mum's GP. It could be helpful to keep a diary of her behaviour for week or so and let him/her see this. If your irnyourndad has Power if Attorney for your my the GP should be willingbtonduscuss your mum without her present. My mum's GP was always willing to talk to me about my mum even though I didn't have POA for her.

    Another useful contact is the Admiral Nurse service. I'm not sure if you have an admiral Nurse in your area but you can check here -

    That website will also explain what they do. If you don't have one in your area you can call them for advice. We have no Admiral Nurses in Scotland but I emailed them and I got a very helpful reply.

    There is also the Society's National Dementia Helpline. You could telephone them for a chat about the problems you are facing. Their number is 0300 222 1122. This link explains a little more about the Helpline-

    The Helpline is usually open from:
    9am - 8pm Monday to Wednesday
    9am - 5pm on Thursday and Friday
    10am - 4pm on Saturday and Sunday

    I'm sure you will receive lots of help and support on this forum.
    Take care.
  3. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    Hi Murrill,

    Welcome to TP.

    There are a lot of things you can expect, but I wanted to give you a tip about the COPD/dementia relationship. Does your mum get a lot of chest infections with her COPD? My father does frequently, and every time he gets one, the combination of the infection itself and the medication makes his dementia much worse until he recovers. Many dementia patients seem to get UTIs, but with my dad it's chest infections. So I'd recommend bearing that in mind and preparing for more bizarre behaviour if your mum gets an infection.

    Best of luck,

  4. murrill

    murrill Registered User

    Jul 28, 2015
    Thank you both for your replies. It helps just to know others are surviving similar experiences.

    My Mother has not had a COPD-related infection recently, but she is more prone to them in the winter months. It makes sense that the meds would exacerbate symptoms, so I appreciate the information.

    My Father put a stop to Mother's driving and money-handling last year, but no formal legal steps have been taken. Her geriatric doctor advised them to take care of those things last year, but they have not. I suspect my Father thought he could handle it, but he now realizes he cannot. She will see another doctor in the geriatric medicine practice next week. She refused to return after her initial diagnosis, but she feels so awful right now that she is willing.

    I just realized that this is a UK-based site, and I am in the US. I may have different resources available to me than you, but I think that what I seek most is support from other caregivers. Thank you all for your help.
  5. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Hi murrill and welcome to TP :)

    I thought you might be in the U.S. somehow. You're right, resources will be different, but the practical and emotional challenges inherent in being a carer remain very similar.....We have quite a few members who are based in the U.S., so you are not alone here from that point of view :)

    I just wanted to say that everyone progresses in different ways and at different rates, so it's very hard to predict what the needs will be in future. However, I have found that my capacity to cope seems to have developed alongside mum's increasing needs. I now find myself doing things every day, that if you'd asked me last year, I'd have said I couldn't manage. So looking forward is of limited value, except when it comes to making legal and financial arrangements, which I have found it is vital to get sorted out as early as possible.

    One of the best pieces of advice I ever read on here was that "Being a carer is a marathon, not a sprint, so best get yourself fit" ie look after yourself as well as the person with dementia, and don't expect to be able to do everything at once :)

    Take care and good luck :)

    Lindy xx
  6. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    My dad also is more prone to them in the winter. The winter when we first really noticed that something was not quite right with his mind was a winter when he had about 4 chest infections one after another. That really seemed to kick-start the dementia.

    Murrill, you say that your mum is "early stage" and if so, what comes next? You also say your mum is refusing food and needs to wear Depends. As Lindy said, everyone progresses differently and at a different rate, but generally speaking, not eating and incontinence are more often features of more advanced dementia. I think you really need to ask your mum's doctor more about her particular situation, what stage she is at and what to expect.

  7. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015

    Hi, Murrill, and welcome to TP. I am fairly new here myself but have gotten a great deal of advice, suggestions, and support here, and hope it will be useful for you as well.

    I am also in the States and am here to tell you that the lovely people on this forum don't mind a bit where we are from. Dementia ignores national boundaries.

    (There is a similar forum to this on the US Alzheimer's website, but, if you promise not to tell anyone, I'll tell you a secret: I much prefer this one!)

    Having said that, there are differences in how the US and UK legal, medical, and social services systems work.

    If you are not in the States, please ignore these links:

    Our national Alzheimer's organization is the Alzheimer's Association, and they deal with all types of dementia, not just Alzheimer's. Their web site is and if you haven't explored their web site, I urge you to do so. They have a 24/7 helpline you can call at 1-800-272-3900. They will be able to direct you to local organizations and groups in your area. Where I live, when I call that number during certain daytime hours, I get connected to a local person in my state and county, but I don't know if that is the same everywhere. But give them a call, they will know.

    In the state where I live, we also have local area agencies on aging, or local councils on aging. They are the organization who may be able to best connect you to other resources in your area. Mine has a website, offers classes and workshops, and publishes reference materials, among other things. This is a valuable resource.

    The next step is to find the local groups and support in your area, and/or the area where your parents live, if it's not the same state and county as you. While some states do offer services/support on a statewide level, mostly it's from the county. Again, AA and/or Google, plus your local council on aging, should be able to put you in touch and help you get started to find services.

    The legal and financial things are a whole other kettle of fish, as you probably know. My advice is that you should get that sorted ASAP. If your parents don't have an attorney, get one. Eventually you will probably want someone versed in elder law and possibly wills, estates, and trusts (depending on their financial situation and the state where they live) but for right now, a regular old lawyer with experience in wills and powers of attorney will do. Both of your parents need to have a will, your state's required living will/health care power of attorney forms, and a general power of attorney. If something happened to your dad, and you don't have power of attorney for your mother, you will (depending on where you live) have a very difficult time doing things like paying the bills. You need both your parents to do this. You need an attorney who will go to their house (a good one won't have a problem with this) and will know how to talk to them. This will save you a huge amount of time and hassle and emergencies later on, trust me.

    Then we come down to the nitty-gritty of caretaking. As you know all too well, it's terribly difficult and exhausting, physically and emotionally and mentally, to be a caregiver for someone with dementia. You are not whining. Nobody here will judge you for saying it's hard

    I think it sounds like you really, really need some help. I would consider:

    -establishing direct contact with your mother's doctor. Even if she hasn't given them permission to talk to you (and she may have, in the past, and the doctor may be able to obtain that from her verbally, even now), you can always talk to them. Make sure they understand what is going on from a caretaking point of view, as well as her health. Is it a primary care/internist/GP that she has, or a geriatrician, or a neurologist, or what? Find out what options they have to get you as much information and help as possible. Some memory clinics/geriatric/older adult practices can connect you directly to social services in your area. But I agree with others, more information about your mother, from the medical professionals, will be helpful.

    -get the legal paperwork under control

    -find out about support groups in your area, and attend them all until you find one you like. It took me several tries to get the right ones. My local Alzheimer's association knew about most of them, but I found a few others through community agencies. I attend one that's just for dementia caregivers and another one that is a general caregiver group, through a community agency. Some of these offer respite care for the person with dementia. Your dad would benefit from this as well. Support groups, like this forum, are an important way to feel connected and know you are not alone.

    -find out about any social services that your parents may be entitled to, such as Meals on Wheels or whatever is in your area. Be prepared for your mother to refuse, but gently go ahead anyway (more on this later). If either of your parents is a veteran, you may be entitled to services through your local VA agency. There may be community agencies or local faith-based agencies.

    -find out about day care and other respite options in your area. If your mother could go to day care (sometimes called adult day care here in the States) even a few times a week, it would give your dad a much-needed break. Respite is the term for when the person with dementia goes and stays somewhere, sometimes at a local nursing home or other facility. Some day care is through facilities, some is privately run, some is community agency based, etc. It will depend on where they live (sorry, you are probably tired of hearing me say that).

    -investigate getting help to come to the home, whether it's cleaning, a caregiver, a companion, a lawn service, a handyman, a personal chef, whatever, you name it. Caregiving takes up so much time and energy that other things get lost in the shuffle. You could also look into a delivery service for groceries or even getting regular supplies from Amazon, to cut down on the shopping. A laundry service is another possibility. This would probably all be private pay but may be money well spent. Medicare, Medicaid, and insurance will pay for some home care but as I'm sure you know, that's complicated.

    -if it's the sort of thing that helps you, there are lots and lots of books out there about dementia, caregiving, Alzheimer's, et cetera. If that sounds like something you want to pursue, head to your local library and let them find books for you.

    That is to get you started. I'm sorry to present you with a laundry list of things to do and I hope it's not overwhelming. When I found out my mother had dementia, I literally did not know where to start and luckily my therapist works at a local community agency, and she put me in touch with the right people, but I would have been lost otherwise.

    I also want to say that I, and many others on here as well (more than you'd think!), am the adult daughter of a difficult mother. I've never been emotionally close to my mother, she wasn't a particularly good mother, she has battled mental and physical illness all her life, and now I have been landed with the job of being her caretaker (I'm an only child and so is she; my parents divorced when I was very young and my father died in 1998). I love her because she is my mother, but I do not love the person she is, nor do I like her, nor have I done for many, many years. As you said, I'm here for the duration. I will do this job to the best of my ability but I will not let it destroy me in the process. I'm not the only one here, who feels like this.

    Earlier on, when I was trying to "research" dementia and caregiving by reading all the books I could get my hands on, I often felt frustrated that a lot of the books and online resources talked about people who were devastated that their loving, warm mother, to whom they'd always been so close, was now changed by dementia. This is not to belittle their experience, but I couldn't find anything in that experience to relate to--my mother is still as unpleasant, unpredictable, manipulative, demanding, and difficult as she ever was, just worse in a different way. Here was where I found other people who knew what I meant and didn't judge me for it.

    I hope something in this mess of a response helps. Please read around on the current and older threads here on TP, come back and ask questions, whatever you need to do. There is support here.
  8. Bill Owen

    Bill Owen Registered User

    Feb 17, 2014
    Know one no where it end or takes them and has

    we are on the road to no where .with this illness my wife has lewy body.
    Dont know what is in front of me only can look after her .sorry im dislix so baer wwith me on my spling
  9. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    Hi Bill,

    Welcome to TP.

    Like I say to my dad (who has dementia) and my mum, who is his main carer, all we can do is take it day by day, or minute by minute some days. You can't plan anything with dementia. And if today was bad, well, tomorrow is another day.

  10. murrill

    murrill Registered User

    Jul 28, 2015
    My Mother has a long-standing difficult relationship with food, and she has been on a "diet" every single day that I can remember. Had she ever permitted herself to be assessed she most likely would have diagnosed with--among other things--an eating disorder. In her defense, though, she has had diarrhea for about a week, we think, which is why she is wearing Depends. Today was better, but she will see her doctor next week. I hope for some advice. Thank you for your input.
  11. murrill

    murrill Registered User

    Jul 28, 2015
    Thank you all for your replies and the excellent information. Yesterday was hard; today has been better. I get the feeling that is what we can expect.
    Both of my parents have wills, but a good point was made that if something happens to my Father I should have POA. I will speak with him about this.

    Amy in the US: Thank you for not judging me about my feelings toward my Mother. As her dementia progresses she is less able to disguise the mental illnesses that have had such a searing impact on this family.
  12. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Amy - I just wanted to say that wasn't rambling at all. Masterful and comprehensive would be my description. Thank you.
  13. murrill

    murrill Registered User

    Jul 28, 2015

    It has been a grueling week or so, and I have not had a chance to stop back in here. My Mother has had chronic diarrhea, she was refusing food, and she was particularly confused. Her blood pressure was dangerously low, and she was dehydrated. In short, things have gone from bad to worse. She had a colonoscopy this morning, and she will have an upper GI tomorrow.

    The good news is that we know what is wrong: She has the bacteria c. difficile and e. coli. No wonder she has felt so awful. At least it can be treated. She stayed in bed for about five days, but she is sitting up & watching TV now. She has also eaten a little today. It is small progress, but it is progress nonetheless.

    I've also talked with my Dad about power-of-attorney. He is thinking, but I expect we will get that done. It has been so helpful to share this story with others who know what it ia like. Thanks you all for your help.
  14. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Hello, murrill, and it's nice to see you back. Thank you for returning and updating us about your mother. I'm so sorry to hear about her condition but hope she is getting good treatment (in hospital? IV fluids, one hopes?) and, as you say, the diagnoses explain a lot about what was going on. Perhaps if you can get the physical problems sorted you will have a better idea of her "baseline," if that makes sense.

    I'm so glad you are able to talk to your father about the Power of Attorney. I hope you're able to get all the paperwork for both of your parents sorted out.

    Hope your mother's physical condition improves and please come back any time; there's always someone here!
  15. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    Hi Murrill,

    Oh, I see. Pre-existing conditions can be confusing when someone develops dementia. In my mum's case she has always suffered from mental illness which greatly confuses matters. When the doc suggested she might also have dementia as well as dad, I told him she'd been like that since her 20's!

    Hope thinks are working out with your mum.

  16. Boldredrosie

    Boldredrosie Registered User

    Mar 13, 2012
    Hi Murrill

    C diff is AWFUL. I do hope they sort it out and you, your father and anybody else who comes in contact with your mum must observe strict hygiene. If you've not already laundered your mum's undergarments (actually even if you have) talk with your health authorities locally about disposing of them as clinical waste. It's an extremely infectious condition.

    You've already been given some great advice on how to proceed. But just so as you know, my mum has had physical and mental health problems since I was born (probably before) and the mental health issues certainly delayed the dementia diagnosis. What I would say from my experience is that the dementia seems to have stripped away any kind of social skills that she might have learn to manage in company. It's not as bad now as the disease is quite advanced but my mum has obviously had dementia for a long, long time and as a consequence in previous years (say about 15 years ago) driven many friends away who simply couldn't cope with her behaviour and none of us realised it was spurred by the dementia.
  17. murrill

    murrill Registered User

    Jul 28, 2015
    We knew something was wrong (in addition to dementia), but C. diff had not occurred to me. Once we saw the diagnosis it all made sense. She appears to feel better, and we have laundered everything we can think of. We are wearing rubber gloves and using disinfectant. I hope this passes soon.

    During this course I have noticed that the dementia has been worse. Whereas she previously forgot things or accused my Father of doing things he had not. During the past few days she has been "talking out of her mind," as my Dad puts it. She "saw" children picking up shells outside her window; we are one hour from the beach. She thought it was Easter, and she believed water was leaking from the ceiling. This change has been sudden.
  18. theunknown

    theunknown Registered User

    Apr 17, 2015
    How I empathise with your post rosie. I now believe that my mum was having mental health problems for a very long time and I had no idea. I thought she had a very prickly, sensitive character. I know she'd absolutely hate to know this, but I've never enjoyed the relationship we've had. It doesn't stop me loving her, but there've been times that I've wished for a different sort of mother. Now, of course, I've got one! Who knew that things could get worse :eek: I guess it's a question of be careful what you wish for. How I'd love to be able to have one of her long telephone calls complaining about what the neighbours are doing now. My dad left us in 1978 (now dead) and I don't think she ever got over it. It's only through notebooks, documents, etc, that I realise she probably did have mental health problems. And this coming from someone who's had chronic depression since childhood. You'd think I'd have realised what was happening!

    And Murrill; it's funny how often you read on here that hallucations involve children. Certainly my own mum was convinced that people were letting children on to the locked mental health ward at nighttime so that could run up and down stairs (no stairs) disturbing people and stealing from them.
  19. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Dementia symptoms are always much, much worse when they have an infection, so thats probably the reason.
    Have you got antiseptic hand gel for you all (including her)? make sure you all use it after using the loo. Slather it all over her hands if necessary. Poor hand hygiene is the most common path of transfer.
  20. JayGun

    JayGun Registered User

    Jun 24, 2013
    I don't have anything if use to add, but I just wanted to say that my MIL is another one who hasn't become a different person, but is the same as she ever was - only very much more so. It's nice to know that there are others out there.

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