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Parents caring for the parent support thread

3togo3togo Registered User Posts: 5,233 Senior Member
edited January 2014 in Parent Cafe
CC was a great help to me last week helping deal with issues caring for my parents.

Let's have a specific place to talk about helping care for our parents. Come here for support, to ask fro help, to give advice, or to lurk.

Whatever the issue with which your family is dealing you are not alone ... hopefully this will be a place that shared experiences can help you and your family work through the issue.
Post edited by 3togo on

Replies to: Parents caring for the parent support thread

  • mamitamamita Registered User Posts: 234 Junior Member
    Great idea; there are many of us helping out our parents or in-laws as they age. Tapping into the collective wisdom here would be useful for practical suggestions or emotional support.
  • worknprogress2worknprogress2 Registered User Posts: 1,355 Senior Member
    Great idea - the only problem may be that those of us who are in the throes of caring are too tired to post!!!! :)

    I realize that while I was never guilty of such as a parent, I have now become a "helicopter daughter." I have become very, very protective of my mom whose dementia has gradually become worse. Her expressive language has become so limited - yet she is still aware of subtleties and nuances.

    My folks moved into an independent living apartment in a CCRC about four years ago. My dad was move permanently to skilled nursing because of an assortment of health problems in July (he had been in and out of the hospital & skilled nursing four times in the past year) and now the administrative team has strongly recommended that my mom be moved to assisted living. Although her new apartment is lovely and I know she will benefit from supervision, I DON'T want them to curtail her too much. She is very active physically. She loves to walk and move around. She has never gotten lost on the huge campus - although if someone stops and asks her where she is going or where dad is - she can't answer. I have tried to tell people to think of her as someone who does not speak our language - but they tend to equate her verbal fumbling with mental confusion.

    We have had "Tender Touch" services for the past two years. Someone comes in the morning to make sure she has taken her meds, and someone in the evening just to check and see if everything is okay. The women who come in always say there is nothing for them to do - mom is meticulous in her personal grooming and in her care of the apartment.

    So - despite my misgivings - she will be moving September 5. At first she was devastated. And her language skills were certainly adequate when she was expressing how much she did not want to move. And how angry she was with me for "doing it to her." She has become more resigned and can even see some benefits.

    I am sure packing next week will be emotional - but once she is moved I am praying she makes the adjustment.

    this is not easy.
  • sistersunniesistersunnie Registered User Posts: 689 Member
    just back from Florida, my father had a heart attack. Now they want to move to my state so they have family around them. Somehow the day I needed to care for my parents always seemed so far away......
  • PhotoOpPhotoOp Registered User Posts: 1,194 Senior Member
    Sorry to hear that sistersunnie - but at least they are willing to move closer to you instead of expecting you to move closer to them.

    My FIL is in the early stages of Alzheimer's - MIL is his caretaker. So far it doesn't seem to be straining them too much but it seems that she is at the point where she no longer leaves him alone. She doesn't talk much about it to me or my husband but you can sense the strain. From those of you with experience, what can I expect next? He just seems really childish now. And he gets agitated, but that isn't really new for him. He doesn't forget people - yet - but repeats questions you have already answered.
  • FlyMeToTheMoonFlyMeToTheMoon Registered User Posts: 2,926 Senior Member
    This thread is very timely. My parents just moved to a retirement village two months ago. Prior to the move, my father had mobility issues due to neuropathy in his feet. He should have been using a cane, but was too proud to do so. Soon after the move, he injured his back while moving a piece of furniture. Yes, we have given him the lecture about asking for help, but....

    The pain in his back made it impossible to walk without the assistance of a walker, which the doctor ordered and he is now using. However, his feet have become numb, probably due to lack of use, and even using the walker is questionable. He has fallen several times in their cottage because his leg buckled.

    My sister and I are trying to get educated to know what the next step is. As we talk to his physical therapist, the social worker, and the doctor, we get the sense that they are speaking in some kind of code that we need to decipher. In other words, I think they are trying to tell us that he will be wheelchair bound, but don't want to take responsibility for telling us. I need them to be brutally blunt with me, or otherwise I don't know which direction to go. It is so frustrating.

    I have a feeling I'll be on this thread a lot.
  • LVKrisLVKris Registered User Posts: 545 Member
    PhotoOp - Does your MIL have any help? She may be reluctant to ask for any, because she doesn't want anyone to know how much their situation has deteriorated. She may equate asking for help to losing her independence. If your FIL can't be left alone anymore, your MIL cannot be his only caretaker without risking her own health and mental well being. Maybe you and your DH could help her arrange respite care to give her an occasional scheduled break.
  • swimcatsmomswimcatsmom Registered User Posts: 16,156 Senior Member
    Oh, timely thread for me.

    My Mum lives in England, so my brother bears the brunt of the care-taking but I am involved where I can be. She has always wanted to stay in her own home and that was out hope for her even though she has been becoming more physically frail and forgetful. That hope came to an end in May when she fell her bedroom and broke her hip one night. Luckily my brother was there as he had taken her to a hospital appointment the previous day. (this was just a few days before I was leaving for Houston to M D Anderson with my husband for a week of his post chemo/radiation scans,tests, and scopes so I felt like I was just going crazy). Mum had surgery after a few days - first other health issues such as not being able to control her blood pressure and heart rate delayed it, then she refused it. Her mental state was poor, probably related to pain killers and stress and she went into a state of thinking they were trying to kill her (this also happened a few years ago when she had cancer surgery).

    The surgery was finally done and she ended up in hospital for 3 months while they did physio plus a couple of other health issues arose. She did not make a good recovery physically (can walk a little with a walker - or zimmer frame as they call them in England - but needs help to stand up, sit down, bathe etc). She realized she can not manage at home and agreed to go to a care home and I went home to England to help my brother find a home and sort some things out. When I arrived she had gone into a very confused state again and thought the nurses were trying to poison her. My brother said she was not like this just a couple of days earlier. It seemed to be related to a UTI she was suffering from. He and I visited several care homes trying to find one we liked. Out of 7 we visited, we really liked 2 as they were more homely and less institutional, had a lot of organized activities, and they also did not smell like nursing homes. Our first choice was one very near my brother. Sadly, when the care manager went to assess my Mum she did not feel they could meet her care needs because of her high level of confusion (on that day, among other things, she denied being willing to go to a care home and was mad at my brother for organizing this behind her back - not the case at all). This particular home is not certified for dementia care, and even though my Mum does not have a dementia diagnosis the home felt her confusion levels were very high (I really ended up feeling the care homes were a LOT more expert in understanding old people issues than the hospital).

    She ended up going to a care home near her own home. We really liked the "feel" of the place. It is an old country house that has been converted. Her room is like a nice regular bedroom in a house and overlooks fields. The home has 7 acres of beautiful gardens and many living areas for the residents to choose from including a huge sun room. They have a full time activities director m-f and a part time one for weekends and try and do a lot of things for the residents. The care seems wonderful and caring. But it is still so sad - sch a change for Mum to go from her home of 50+ years to living in a strange place with a lot of strangers. The day she went into the care home I had to fly back to Houston for another week at M D Anderson.

    Now we have the difficult task of having to sell her home to pay for the care home. It would be hard to do this and have to sort through her stuff is she had passed away, doing it while she is still alive just is beyond difficult.

    Well, this is long and unedited as I have to be somewhere. Sorry for any typos.
  • somemomsomemom Registered User Posts: 11,102 Senior Member
    This could be a great sub-forum, moving all the old parent care/issue threads to that sub-forum of the cafe. Then people could post when they are in the throes of the issues and others could later read those posts when their crises hit.
  • travelnuttravelnut Registered User Posts: 1,955 Senior Member
    WNP2- This is often a tough call. Recently moved parent with advancing memory loss to memory care unit, with no confusion about who is who. While there may have been some time to wait before it was imperative, it is better socially to have activities built-in. Parent could no longer initiate and remember social plans or when there were events of interest "on campus". While the staff was beyond caring, they were not set up to prompt for every activity. I was also concerned that if we waited for a "crisis", there might not be a bed (high quality place and last year had no turnover for 12 months).

    I think it has worked out great to have more support and arrive with as much function as possible. Being in the familiar setting masked a bit of the deterioration and I like that new relationships and routines can be established before more is lost. Of course, there is a wide variation in how dementia progresses. We have faced a much slower process than I would have predicted 15 years ago when the problem first surfaced. Wishing you and your family the best with this.

    Lots of fortunate elders to have CC folks looking out for them.
  • MidwestParentMidwestParent Registered User Posts: 852 Member
    My 94 year old mother has different issues than most of those mentioned here. Her mind is sharp as a tack, but her body has been in steady decline for several years. Horrible arthritis, worn out joints body-wide, and severe spinal stenosis. Macular degeneration and a cerebral hemorrhage in the occipital lobe left her with very limited vision.

    Mom lived in her own home until she was close to 92 (with a LOT of help from her 4 children!). It was a nice little duplex in an over-55 neighborhood in a suburb of a larger city. As she physically declined, she became unable to go out with her friends and they stopped visiting. She lost her ‘community’, which was one of the hardest losses of all.

    After her 3rd stint in a rehab facility due to pain from spinal stenosis, we moved her to an assisted living facility in our smaller town, even though two of my siblings live in the town she was from. We did this for a couple of reasons – my husband is a physician and agreed to take over her care (lovely man that he is) and assisted care facilities in our state allow residents to have much great levels of disability than facilities in the neighboring state my mother was from. In her state, she would have had to move to a skilled nursing facility. Mom made the final decision to move and we didn’t put her house on the market for over a year. In the back of her mind (and I have to admit, mine too!), she was thinking she could come here, get better, and return to her home. Looking at how she had gone from unsupported walking, to a cane, to a quad cane, to a walker, and then having difficulty walking at all, we should have known from the beginning this move would be permanent.

    The staff does a wonderful job caring for her, but the worries remain many. Even in our town of 25,000, she pays $60,000 a year to live there. She has enough money for @ another 3 years – hopefully that will be enough. She is incontinent, especially at night. Being of sound mind, she absolutely hates it. Being the one who buys the supplies for her, I can tell you that being incontinent is EXPENSIVE! We go from several months of things being relatively ‘quiet’ to a medical issue popping up. A very painful hip is plaguing her now. The past couple of months it has been painful shoulders, limiting her arm movement. At times she is able to walk with a walker, but she is wheelchair bound much of the time. She has been hospitalized 4-5 times since she moved here, but (fingers crossed), her last hospitalization was close to a year ago.

    As with so many things in life, we take it a day at a time.
  • worknprogress2worknprogress2 Registered User Posts: 1,355 Senior Member
    LOTS of thoughts -

    Thanks travelnut - you made an excellent point about availability. To those of you who are helping your folks assess a CCRC (continuing care retirement community) ask about the ratio of independent units to assisted living units, skilled care units. These communities sell healthy aging - they really want to downplay other levels of care. ASK how often beds are filled when needed by residents.

    UTI's - They are horrific for the elderly. People who are quite capable one minute become psychotic and paranoid when they have a UTI. And it happens quickly. The elderly are often extremely susceptible to dehydration. No long term decision can be made when an older person has a UTI. One minute they are truly delusional, but once the infection is cleared up, they can often return to their former level of functioning.

    FMTTMoon - we need to chat. Fortunately, the two of us live close to each other so we can actually meet IRL!
  • sevmomsevmom Registered User Posts: 8,333 Senior Member
    MidwestParent, The incontinence supplies are indeed expensive and there was no reimbursement at all until my mother entered hospice care. All of it was out of pocket as were aides to keep her at home.
  • sevmomsevmom Registered User Posts: 8,333 Senior Member
    Another issue to consider with CCRC is portability. My MIL (we will attend her memorial service this weekend-she was almost 92) was insistent at age 80 that she did not want to leave her hometown(understandable). None of her 3 children were in that town and she was encouraged to keep her options open. However,she bought into a CCRC and tied up all of her funds with it. She was fine until about 84 but then had to be moved to assisted living and ultimately to a locked memory unit. Her closest child was over 4 hours away. Her decisions tied everyone's hands and prevented a move to get her closer to a child. It was heartbreaking as she became more and more frail. Handling all of it long distance adds another layer of stress. Keep your options open. It of course may be different if the family has all been in the area forever and there has been no moving around by children. Best of luck to all dealing with these very difficult issues.
  • ChuckleDoodleChuckleDoodle Registered User Posts: 767 Member
    Hello, my name is ChuckleDoodle and you can count me in as a member of the sandwich generation..... :-)

    Mom lives with us and for a moment last week I thought we were going to lose her. She had lost 50 pounds in 4 months. Unfortunately, I didn't realize she had lost that much weight because she always wears baggy clothes.

    Long story shortened drastically- - we had her admitted to hospital and they found several large ulcers in her stomach. She's now on meds including an appetite stimulant and she may be able to come home tomorrow.

    One thing to also think about with a parent is a legal power of attorney to make medical decisions and/or regular decisions and a dnr- if desired.
  • sevmomsevmom Registered User Posts: 8,333 Senior Member
    ChuckleDoodle, Best of luck to you and your mom. It is very easy for elderly people to lose weight, not be well hydrated,etc. You sound like a very loving, involved child. Your mom is lucky. Great advice about POA, DNR.
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