I'm not sure how to start this, but mom had a hard March. I saw a lot of things change - things that I hadn't noticed 7 months ago - and she had fallen every week. Luckily, no injuries, but she wasn't that unbalanced months ago. Her sister and I are her POA's (I am 1st and my aunt is 2nd) and I emailed her yesterday about what I've seen. She read the email and called saying she wasn't surprised to read what I wrote. She was expecting news that mom had gotten worse. Now she is coming for a week to help.
However, I'm starting to feel like I'm going a little crazy. Mom gets upset when I discuss her "behind her back" although I've reassured her, it's never bad, it's out of concern and I need help to make sure I'm doing what's best for her. She does seem to be more sensitive than normal, but once we talk she's ok. But I do feel like I'm going crazy. My brain will sometimes tell me that she'll beat this, that she can get stronger and survive, or that she's not that bad. Sometimes she tells me she's uncomfortable and hurts, so I was calling my Aunt to see what I should do... I didn't know if it was time to prepare for the future (looking at either nursing homes and/or more help, and/or hospice help) because I felt like she had gotten worse within a month.
I know that my mom will die from this. I know that she can't beat it. I know that when she gets upset it's not how she would've acted before this. But I just don't know if I'm "too close" to this and maybe she's not doing that bad, or if I'm correct. I think part of me is glad my Aunt is coming because she hasn't seen her since December, but I think she'll be able to give me an unbiased opinion & tell me if I'm right or wrong.
Does anyone else feel like that? Like your own brain is tricking you? Sometimes it feels like I'm going insane. Some days she forgets major things - like who her POA is (me) - or asking if I can afford to put her in a Home. I've told her "we already set up your finances last year and you have everything you need for if/when you go to a home", but things like that startle me because I know those are important details, and I know she knew about that all this time.
Anyway... that's the only update I have right now. I am getting tired and have decided to have her caregiver come every day of the week now while I'm at work. She was coming 3x a week, but I really don't feel like mom can be left alone at all anymore. I guess I feel like I'm in the strangest position. I was taught to respect and honor my parents. They've always been right. They've always known what to do. They were wiser than me. I mean, all of that, and now I feel like I'm going against her by thinking I have to plan for the next step. And the reason I feel like that is because sometimes - sometimes - mom comes back to me. Our relationship has become more and more patient/caretaker and the mother/daughter relationship is shrinking. But when we do discuss things, I think she's worried I'm going to put her in a home tomorrow... so she says she's fine. I want her with me as long as possible, I'm just afraid of what each month will bring.
Thanks for letting me vent. I hope everyone is doing ok.
-A
Written by
ARutzen
To view profiles and participate in discussions please or .
Keep a diary of what you see, changes however minor, what your mum says or feels.
You will have a better understanding of what is happening and how quickly change is occurring.
Talk to your mum and include her in your thinking and planning. She may not agree with you - but you can always keep your thoughts to yourself and plan quietly for what you see is happening. I did!
Your mum will not want to go into care, nor would I, but sometimes there is no other solution if change happens suddenly. It happened to my hubby!
Look at whether small alterations in the house could make your life and your mum's care easier. Some can be expensive such as walk-in bathroom. We never got around to this.
Talk to a physical therapist and keep her moving. Your mum won't listen to you, but is likely to listen to a PT and do the exercises with him/her. The PT will also be able to suggest aids to help get around the house. Your mum may not think she needs them now, but it will be useful for you to know how and what to ask for when the time comes.
My hubby went off on a walk first time with his walker - then tried to raise the height cos he felt it was wrong. He could not put it back together and I had to go out looking for him!
You are not alone in your thoughts, concern and confusion! We have all been there! Learn to trust yourself and to know your mum as she changes. Give her lots of reassurance and love. She is probably quite scared when she notices a change and may hope you have not noticed!
You will be relieved your aunt is coming to stay. Yes, she will notice differences and may well back you up. At the same time, try and find time to get out together with your mum and make the time special and enjoyable while you can.
Thank you for your response. Yes I have been keeping a journal, that's really the only reason I knew how often she had fallen last month. She went to PT and still goes, but even when she tries her leg is almost to the point where she can't move it. We encourage her - as does her caregiver - to keep trying, but you are right, she is scared. She told me she's mostly scared about being unable to move at all and living a long time crippled before she passes. She's not scared to die, and I know sometimes she wishes she would... which is awful for me to hear, but I can understand why. Day by day - right? Thanks again
Hi ARutzen I’m so sorry you have had a rough month of it . I’m so glad your aunt is coming for a week to help . Maybe the 3 of you ....your mum ,your aunt and yourself can make some decisions about the future together.
Try and get a bit of time for you while your aunt is staying . I know we can’t see friends but even a picnic out in the park with a friend helps . I did this last week with my friend who’s a carer for her mum .. I knew she wasn’t up for it when I suggested it . She really loved it when we got there and she talked and ranted for ages .
I still think it’s a lot for you to deal with so grab all the help you can and don’t be afraid to say your not coping ! You are amazing to do what you do but don’t try to be super women ...love and hugs from Belfast xx
Hi ARutzen!*Releasing the PSP caregiver and allowing him/her to have a life outside the home as well as to avoid strong or continuous physical and psychological efforts is fundamental. The main caregiver of a PSP patient is progressively taking on additional tasks. To the person's previous work (before the disease had been shown) must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance and surveillance of people who form the help team. A special and continuous attention must be directed to the main caregiver and his/her medical history.
Remember that the main caregiver jobs and occupations grow along with age and the disease progression. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.
Rest and sleep well is essential. Combat stress, too.
The patient often discharges his/her frustration and complaints about the primary caregiver. It is a very hard and discouraging situation but it must be overcome. It is one more symptom. Also it is exhausting being on call 24 hours a day 7 days a week.
From our experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems.
As say JEN2017 “nobody could/should go through this hard disease alone. Especially the caregiver”.
Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”.
There is always the possibility for the caregiver of losing patience, or not having enough hands for the task at hand. It is then when he attacks the feeling of guilt, unfairly. Be careful.
No one will understand you unless they have been through such an experience. There is always the feeling that you could do better and always keep your nerves under control. We are not perfect and whoever does everything he can is not obliged to do more.
It is worthwhile for the caregiver to report on the typical progression of the disease and then take each day as it comes. All patients are different and even with a lot of accumulated experience about the disease the caregiver must be prepared for what he did not expect.
Finally, reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
First, I'm sorry PSP/CBD/ etc. has entered your family.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
I am not a phisicyan.
During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family I am sending by private mail of this chat the notes-document with our experiences and our informations hoping to be useful.
I feel much the same. I had my brother and sister come because I wasn’t sure whether perhaps being with my mother every day I wasn’t seeing her as she really was—maybe she was obviously actively dying and I was just carrying on in denial. (They saw progression but nothing drastic.)
My mother is more advanced in her illness than your mother. Soon if she cannot stand we will probably need some kind of transfer lift. I often wonder whether we are going to be able to handle that level of care at home. Since she is nonverbal and has difficulty indicating yes or no, it’s impossible to know her wishes for anything we didn’t discuss earlier.
I’m not anxious that she will die, but of everything between now and then—the process/experiences she will go through, and the decisions I will have to make. She could be in pain and we often aren’t able to tell.
I have found it helpful to get to know the residential care facilities and levels of care available nearby (skilled nursing vs assisted living vs care home etc). They might allow visits soon and you should go check them out. I feel more assured knowing that there are backups, and you can also better weigh the advantages/disadvantages of home vs outside care. I also got a hospice referral and spoke to a program but haven’t pulled the trigger on signing up yet.
You no doubt spend a huge amount of time thinking about your mother’s needs and how to meet them. It is a very loving and respectful thing to have taken on all this responsibility.
I have also just arranged for daily caregivers, giving up the 2 days I was covering. I was very burnt out and worn down by all the family needs, especially after a caregiver was out on quarantine. I told myself I could do this for 2 years, which I thought was her prognosis, and we’re at month 20. I will probably keep going as long as I can but will reassess along the way.
I'm so glad that I'm not the only one who has experienced these feelings and I think you and I have a lot in common with this part of the disease. I am also not sure how long she will have to deal with the physical part before she doesn't have to carry this weight anymore, but I am like you, I said 2 years too, and I'm in month 7. I don't want to give up yet. I know I'm tired and I am asking for help when I need it, but I always want to see things through and now especially for my mom. Crazy how things change in life. How you have to adjust and reevaluate. But - that's life!
I can identify with a lot of what you have said. The change in role from your Mum guiding you, to you guiding your Mum takes some adjusting too & I was resistant to it. It wasn't until my husband said, don't keep asking her everything, she wants you to take control, that it began to dawn on me I needed to change my approach and found giving Mum a couple of options worked quite well for a while & then just making the suggestion & hope to get some buy in to it. Sometimes I would get the carers to help me put a suggestion to her. The fact that they wore a uniform, Mum would sometimes listen to them rather than me, so I used that to my advantage.With regards money, is she forgetting or wanting reassurance? Mum was always worried about whether we had enough money for everything & whether she was going to leave me enough. It got very frustrating at times, when I tried to explain she was fine financially, her favourite saying was "so you say", which basically meant she wasn't covinced by a word I said!
It's good that you are getting more help. One thing I found was if you are tired and exhausted you find it so much harder to plan & make decisions. Perhaps whilst your Aunt is staying you could get a couple of days off to allow yourself that little bit of distance & be more objective? You definitely deserve a break. You are doing a great job looking after your Mum & I am sure she appreciates it. xxx
Hey there,Thank you for the advice, I do have a really hard time adjusting to being the one to make decisions for her rather than the other way around. It's very uncomfortable and foreign to me. She was always the one who had the answers, knew what to do and how to do it, and never gave me bad advice. So it's hard for me to talk to her sometimes as I feel like I'm disrespecting my mother. She used to always say that to me, "Don't disrespect your mom" and I still believe in that even though I'm an adult. Yes, I think she is forgetting about her money, but she also worries about what is going to be left too. Honestly, there probably won't be anything left, but I really don't care. I've told her that before, but I know she doesn't want that. And yes, I'm going to try to take some time off. Thank you again
As a patient living on my own I have a few insights that might help with understanding what your mom might be feeling. I’ve had symptoms since 2017 but was finally diagnosed only 2 months ago.
I’m 65 and have been verrry independent all my life. I’ve let my 34 year old daughter deep into my life but not into helping my body physically. She fixes things around the house, does things like move heavy things (I can’t handle over 5 pounds now) or cooks twice a week and I completely trust that we’re on the same side here. But still, when I needed a hip replacement I specifically told nurses and doctors they couldn’t talk to her without me present.
It was a really weird stance to take, and after a few weeks I realized what it was. Because I’d taken care of my mom when she was in a nursing home and had to make hard decisions for her including hospice, I didn’t want my daughter to feel how hard it is to do that for a parent. I’d seen mom in her wheelchair “pacing” the hallway outside a room where the care team and I were deciding that she would not go back home,ever, and felt so guilty at the look of confusion on her face.
I try to keep new symptoms a secret while I can to keep her from worrying about me. She has a life, a job, a husband and I want her to enjoy them unimpeded by my health for as long as possible. I’ve asked my brother, a retired police sergeant, to be my Living will and POA representative with the idea that he can tough and advocate for me from a distance then hand over POA to my daughter after I’m gone.
Right now I have way too much saliva and trouble burping and blurry vision as new symptoms but I won’t tell her about them until I absolutely have to.
I’m truly scared of losing my ability to live alone every time a new symptom appears. I worry that I won’t have any say in the matter if “they” decide I would be best served away from home. And I hate my loss of privacy — she went through fridge the other day and threw out everything she thought was out of date and pitched 2 bags of 4-day old lettuce.
I’ve even hidden my chocolate from her because how much I eat is none of her business. Inappropriate? Probably.
I guess my point is even though caretakers don’t see it we patients have fears too, but they’re all but impossible to communicate.
If you haven’t had a “must” conversation about the future start subtly. Might as well handle this mess together as long as you can.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What is next?
Downward step -
Stepping Back
What Next?
