Please be honest, what is it like caring for a parent with limited mobility?

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Please be honest, what is it like caring for a parent with limited mobility?

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Oh, I have absolutely no time left for myself and my financial resources are shot.

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Before I read the other answers, I want to express my own opinion that your questions sounds like justification for putting your FIL in a home right now. Much of it mentions what you are anticipating will be in the future vs the present, which nobody knows for sure. You are ambiguous about your own non-debilitating health issues. Your children are on their own and you selfishly want some free time with your husband. I think we all want that - and initially expect that - but we also want to ensure that our parents are safe and comfortable, as they did that for most of us for several years at the beginning of our lives. There is satisfaction in giving back, ease of mind in knowing his needs are being monitored and addressed better than in a care facility. There is a bond which forms between the two of you as you get to know him better as a caregiver instead of daughter-in-law. And there is the role model that you are providing for your children who will be faced with the prospect of what to do with you when you get older. Given all that, when I looked up stage 3 of Parkinsons, it appears that falls and assistance with dressing are two aspects which might justify assisted living. It would depend on whether or not these are risks for your FIL and can you afford to put him into assisted living at the relatively young age of 76? Check the costs as it might affect your decision. How does he feel about it; does he want to live independently? I find that living with a parent with mobility issues requires me to slow down and be more patient, be more in the moment. I also have to do a better job with time management, leaving buffers for getting somewhere with him. I have to plan/provide dinner. I have to accept having mobility devices all over the house, occasional scrapes on the walls, rugs removed, adaptations to the bathroom, medical alert strategy/devices in place. Finally, for the sake of his health, I need to ensure he moves more than he wants to as being sedentary is a recipe for things to go downhill.

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My own story. About 5 yrs ago I quit my job to take care of my parents. I moved them much closer to myself and my husband. Mom died unexpectedly 10 weeks after the move. We never had a plan in place of what to do. There was an AL being built nearby and mom had hinted that dad should maybe move there. His dementia wasn’t too bad at the time stage 3-4. So it was agreed by hubby and myself that dad move in with us. He was unaware of our plans for the AL.
He could not be left alone the few times I drive to the grocery store 3 miles away I was a nervous wreck. Even though he lived with us for 4 months my sleep schedule never returned to what it was as when he got up to go to the bathroom I would wake and make sure he went and came back to bed okay. He didn’t need as much care thankfully but it was still stressful. Now that he is wheelchair bound our house would never work with all the steps.

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My husband is 78 yo and I personally feel he gets worse every day. I pray every night not to get resentful--it's not his fault--but every fiber of my body hurts from getting him everything, yelling for him to "exercise," trying to pick him up after every fall, constantly changing the sheets.... I love him but sometimes I think our 3 yo granddaughter does a better job. Parkinson's is SO hard because he knows exactly what is happening. There is no dignity. I'll end here. If there is any possible NOT to bring your FIL into your home, please don't for your own sake.

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I echo everything all the other posters have said. My father has lost mobility, demanded to stay home, and literally was putting my mother in the hospital. We got him into a NH after he fell one too many times and broke his back. Do not let your husband or FIL guilt you into doing this, you will regret it.
God bless all caretakers and nurses, truly angels on this earth. Please keep us posted on what happens.

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Forget about working as you will need to quit your job. If not then hire 24 hr help or be prepared to change his diaper every night at 2am. Aides sometimes don’t show & they make you feel like they are your boss. Forget vacations lol...your not going on any. Diapers, chucks, gloves, A&D ointment etc $200 at least every month. Should I go on? Better install cameras in Home if you hire help & you have to go out. Do you have hoyer lift, hospital bed, commode, wheelchair, seat cushion? Last but not least, do you have a strong back & a stronger heart? What if he develops dementia...then he will physically hurt you. Do you have a helmet & bullet proof vest? When he comes at you to attack you, be prepared. If you defend yourself, & the Aides witness they will report you for elder abuse. Doesn’t matter if he hits & punches you first; you’re supposed to just stand there & allow him to abuse you if he has dementia.

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RUN girl, don"t walk.. No way should you do this. Ren

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I so agree both with GardenArtist and Minstrel!!
I care for my mom who has dementia the last 7 years.
Your hubby may not realize the type of 24/7 job this is and many family dynamics will change, surface and go ugly.
If you do this that “US” time is over.
Maybe bring FIL over to your house for a weekend as a test-drive. Cancel all plans; hubby needs to be with FIL.
I won’t even go into hallucinating (happens w Parkinson’s), meds or the rest. Try a weekend.

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You’ve gotten great and very honest answers here. I can only add one thing, if you do this be prepared for there to be issues that you currently have no idea about. My dad is very frail physically, and until I got more involved in his care I had no idea of all the specialists he regularly sees for various problems, didn’t know how many times a night he gets up (risking a fall, but goes to bathroom over and over) and didn’t know about the very frequent bladder and bowel accidents. There are very likely things you just don’t know yet

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First, the type of health insurance your FIL has would answer several questions no need to pose at this writing. Second, each state, county is now adapting a community action program which puts people in touch with all types of agencies. As far as current mobility, I have a transfer wheelchair for my mother. All 4 tires are the small ones. Take off feet pedals and she can walk around the house sitting to lower fall risk which can be a whole other can of worms. Next, I have a hospital bed for her with a portable commode next to her bed and also behind the door. She can stand and pivot and use the bathroom by herself. All paper products, etc are hanging in a shoe rack behind her door and she can close it for privacy. All baby wipes, tissue, etc go in the garbage can with a liner. I would suggest as commode can adjust as to not bed so much and again, less walking. Being away, I have a Trend Security Camera I got from Walmart $59, not advertising here just sharing what works. It's in real time so I can watch my mother in her room wherever I am from my cell phone. Also, I have a smart tv so I can put sitcoms that can just run as she doesn't do well at all with a remote other than turn off. I also have a Captel telephone that teletypes conversation as she is almost deaf. I am on speed dial so she just pushes one button. Can't really answer for down the road but hopefully, these suggestions can assist you now to help there not be more difficulties until you reach your rope. Best of Luck

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Honey, Parkinson's becomes totally debilitating - you're not ready to take this on.

Now the question is, are you prepared to lose your husband over this? I have seen the ending results of Parkinson's and you will wind up having to do everything for him. You will become a 24/7 slave to his every need.

I'm not saying he won't be grateful - but the fact you're asking tells me, this is not in your cards.

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Excellent answers here. Now let your husband read them because he will see they come from people with experience and not from your own thoughts.

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I was in a similar situation a few years ago. While we went back and forth trying to decide whether or not we could care for my FIL and finally decided to do so, he thanked us for our generous offer but wanted to move to an AL that provided a high level of care. He was very happy there and felt as though he had a better lifestyle making his own decisions. He lived another 3 years.

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I cared for my Mom who had mobility issues for 18 years...at first it was just with a walker getting her into the car, etc. It progressed to where she was completely bedridden and incontinent in my home for about 2 years before she passed on. She would go in and out of hospitals and rehabs before I finally took her in. This was the hardest thing I have ever done in my life and I had PTS and anger issues toward the World in general and the 100s of medical and care people afterward. Our own health issues developed as well. During this time I was tethered to my home. I would get up at 3 am just to have some quiet time because once I entered her room for emptying the catheter, brief changes and clean up, insulin shots, and breakfast tray I was in and out of her room all day long until bedtime. I did have some help from hospice, but most of the things I did myself. The episodes of delirium were scary and I found myself listening to see if she was talking during the night. When she would yell that someone was in her room or at the front door at 3 am it was frightening and I would jump out of bed to calm her down. I stopped hearing from "friends". I also had a spontaneous retinal detachment which required outpatient surgery and my husband went into A-fib during this time and had 2 hospitalizations. We were in our 50s. After my poor Mom finally found peace, I found myself angry and tired, and hating my home because it resembled a prison to me and and plan to move someday probably when my MIL is gone. Then there was the PTS...jumping at loud sounds etc. I am after 2 years finally doing better and getting out and traveling to convince myself I am not tethered to this home. Then my SIL died leaving my husband and I to care for his 87 yr. old mother. Luckily she is still fairly independent in her own home, but that could change fast. This was the hardest thing I have ever done in my life and I would only recommend it if it was a short term situation, you are protecting assets, and you have a large support group. I am surprised at the lack of help out there in such situations and my faith in humanity is very much lower than it used to be as well. I wish you well whatever your decision and hope you get the support you need.

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I would say this to your husband: I am an only child, a son.

Your wife took no vows regarding your father, what you are doing is a lethal mistake to your marriage. Your priorities in order are your wife, your kids, your father. Keep your priorities straight.

I had my mother in our home twice after spending a fortune making changes to accommodate her. During those times she actively tried to turn me against my wife. When I saw what was happening it still didn't register until my wife gave me an ultimatum.

The care giver role is all consuming, give up hope of a happy life with your wife and family until you come to your senses.

How will you get your father out of the house in case of a disaster or fire? Where will you go? In AL living all of that is pre-planned into the building for his safety and there are people awake 24x7.

Private care is expensive and difficult to manage, community care is a sharing of resources that is much more efficient and cost effective.

Finally, you will lay awake at night trying to figure out how you could have been so stupid. The tension in your home will eat at you until you can't take it anymore. Listen to the wisdom of those of us who have made mistakes, make the right decision for all of you and start looking for a nice AL nearby.

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Your husband has a stressful job and he often works late. Who will be home taking care of Dad? Him, or you?
When Dad’s need for care becomes so great that one of you has to quit working to care for him, will it be your husband or you?
If he feels guilty not inviting him into your house now, think about the guilt of moving him into a care facility after he’s lived with you for a while ... and how hard it might be to put your marriage back together.
Remember when the kids were young and they wanted a pet? They said they would take care of it and begged for a pet, and who REALLY ended up taking care of it? You did. How about when the kids were little and got sick, who stayed home and took care of them? Who is really going to be getting up in the middle of the night when Dad needs care? Who is going to be doing all the laundry when bedclothes get soiled? Who is really going to leave work to take Dad to his many medical appointments? Who is really going to call out of work when Dad is ill or injured and needs someone to stay home?
Here’s some stats: Upwards of 75% of all caregivers are female, and may spend as much as 50% more time providing care than males. [Institute on Aging. (2016).] Male caregivers are less likely to provide personal care, but 24% helped a loved one get dressed compared to 28% of female caregivers. 16% of male caregivers help with bathing versus 30% of females.
And if you hire caregivers, be prepared to go through a few before you find someone you really like and trust. (My MIL had a wonderful CNA coming into the house for several weeks after a hospitalization, we all loved her. Then MIL mentioned that the CNA would help her into the shower, leave the bathroom and close the door (in the first place, she was supposed to be supervising the shower), and MIL would find things moved later on, like handbag, things on and in dresser (then we had to make sure all of her jewelry was there, valuables, etc., get a safe box and lock stuff up.)
Bottom line ... if you both are not 100% in agreement (and it’s obvious you are not), then it will NOT be a good experience. You will end up resenting both your FIL and your husband for putting you in that position.

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Unless your husband intends to retire from his job to be a stay-at-home caregiver--which his father needs, then regardless of what he says, he isn't really being honest with himself about his sense of responsibility. We all feel guilty when we don't give ourselves fully. But your husband is really substituting you for himself in this equation. Hold up a mirror and let him see what he is doing.

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Jeannegibbs, good point. It made everything so much more frustrating with Dad. He always thought either he hadn't done #2 in three days, or he'd been doing nothing but #2 for three days. He didn't get that I had to help him with toileting, so I knew. I used to give him chocolate milk in a medicine cup, telling him it was Kaopectate, and that would satisfy him. And the arguments over the showers! --He would yell (couldn't really yell with PD) and say that he had rights, and he didn't HAVE to shower every day, when I was only trying to shower him twice a week. And then having to get his bank statements for him, and he would sit and stare at them for the longest time, bc he couldn't really make sense of them, but he didn't really trust me with his money. It's an ugly, ugly disease, and I'm forever grateful to the young girls at his MC who looked at him like their own grandpa, and cried so when he passed.

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Something else to think about: 50 to 80% of persons with Parkinson's Disease (PD) develop dementia (PDD). The average onset of dementia is about 10 years after Parkinson's has been diagnosed.

The physical demands of caring for someone with PD are daunting. Dementia brings that to a entirely new level.

While your husband is learning about Parkinson's Disease, he had better look into Parkinson's Disease Dementia, too.

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So you asked what it is like to care for someone. I will just tell you how we handle it. We,too, are in our late 50s. My mom was diagnosed with Alzheimer's in 2009. At first I only helped occasionally... She lived with my step father. Later I took her a couple days a week. That increased over time until I was doing 24/7 care in our home. Now it takes both my husband and I as some tasks require 2 people. I am still working full time however I have been allowed to work mostly from home... What a blessing. My husband retired a couple years ago to help me with mom.

Here is what our life is like. First, we rarely get to go to an event together. We usually take turns, one goes to the 1st half of the birthday party, the other goes to the 2nd half. We do occasionally go to some events, but we have to take mom with. That is an involved process, pack up all needed supplies, load the big reclining wheelchair (mom can't sit up b anymore), lifting mom into the car (she only weighs 70 lbs but she's frail so it requires 2 people), and others in attendance have no to be okay with her verbal ramblings... Incoherent. This works with our family and Church events, but not so well for school events (then only one of us can go).

Mom has been totally incontinent for about 2 years. Two years prior to that she needed total assistance with toileting. Because she is immobile and has constrictions, I really requires 2 people to change her. I can do it alone when I have too. She has to be changed, cleaned, ointment applied, etc. every 2-3 hours. Because she is basically bed ridden, we have to take numerous precautions to ensure she doesn't get pressure ulcers (bed sores). We have a hospital bed and a recliner. Both have alternating pressure air mattress pads. In addition, we shift her position every 2-3 hours.

We feed her foods high in healthy fats and protein.. This helps keep her skin healthy. It takes about an hour to feed her each meal. She lost control of her hands over 2 years ago so we have feed her. She doesn't open her mouth very wide so I use a shallow child's spoon. This also makes brushing her teeth tough. She drinks ensure plus too.

Some other tough things about caregiving...
All the supplies and equipment, from shower chair to bedside commode... Disposable briefs to ensure
Bathing issues
Hallucinations and delusions
Sundowning
Lack of sleep when mom is up all night
Dealing with critical family members or frustrations with their lack of caring

Worst of all is the day to day stress of watching someone you love disappear before your eyes.
I love my mom and can tell you many of the wonderful parts of caregiving too but I don't think that is what you were asking. Is it tough work, yes it is. Can everyone do it or want to do it, no. Only the 2 of you can decide and you must do so together. Much luck to you.

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When my mom was still mobile and able to drive, my husband and I thought it would be nice to have her live with us to save her some money. All three of us thought about 6 months to a year; before the year was up, no one was speaking, and sometimes we were yelling. We asked her to move out, but it took almost 2 more years before she actually did (only because her minister told her to). Now she is barely able to move and care for herself and her beloved cat, even with the "village" of people that help her, but we would NOT take her, and she would NOT come. You have no idea how the dynamics of your marriage, your relationship with your parent, and your whole life in general can change when you add a third person to the mix, especially if one of you has history with them.

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I took care of Dad in my home for 6 months when he was prob stage 4. He couldn't be left alone bc he would forget to use his walker, needed help with toileting, & it was hard to find reliable help. When the shower lady didn't come for something like 3 weeks, it was up to me. After 2 falls, a hospitalization & then rehab, I placed him in Memory Care. I ignored some of my health issues that I'm still working thru, & all of my relationships were affected, bc he needed 24-hour care. Dad passed just after Xmas, as the decline in his last 1-2 years was rapid. I would like to think I'd do it all again, & never even place him in MC, if I could just have him back. But honestly, he was a big guy, and I think I did it as long as I could safely. Best wishes.

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I kept my dad for over a year and it was definitely a strain on my marriage. I was unable to put my Dad in AL because he did not have any money. I applied for VA Aid and Attendance and it took 9 months to get that started. It was the hardest time in my life. I was on disability a year and a half before he came to live with me. I have autonomic dysfunction and RA. Both conditions are aggravated by stress. Dad was relentlessly calling me for something every five minutes. He couldn’t help it, but by the time I finally found an AL he could afford, I had almost ruined my health.
Don’t let him move in. I can’t tell you how absolutely draining it will be and it’s not even your father. Bless you!

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*Your husband MUST educate himself on Parkinson's disease and what is required to take care of someone with it. That is a necessary step BEFORE he even makes a decision. He will find, possibly later on, that it will be very taxing physically and also mentally.

*He can NOT make a decision for YOU. He does not have that right. He can take care of his dad (somewhere else) if he chooses but he can't MAKE you perform as a caregiver when you don't want to. Your husband can't insist YOU perform the duties when you're not up to it or don't want to, especially if your health issues will get worse.

*You have done your parenting job and are now on your own. We all expect to have some "alone" time with our spouse. When a person moves in with you, it changes the whole dynamic. When they're sick that makes it worse. I can speak to that because I brought my mother (94 years old, Alzheimer's stage 6) home because my husband wanted her to live with us. (I didn't). Long story short-it really didn't work out. After 3 months she returned to the Memory Care facility (where she is happier and so are we.)

*If you are "forced" to do this, your marriage will suffer. You will be resentful towards your husband for putting you in this situation. You will have more "disagreements" and be angry more often. FIL moving in WILL have a negative effect on your marriage.

*Your husband is making an uninformed decision for both of you because of guilt. He will feel bad by refusing to have him move in. He doesn't want to say "no" to his dad because he thinks it will upset by his dad that he doesn't want or love him. That probably isn't true.

*How do you expect to take care of FIL? You both work full time and hubs puts in a lot of overtime. WHO will take care of his father when you guys are commuting and working? Would one of you quit your job as the Parkinson's progresses? (because he'll need more and more care.) Can you afford that?

*From experience, I can say that I felt a whole lot better in my fifties than in my sixties. I've had previous back injuries (nurse) and they have flared up more as I get older. It made caring for my mom very difficult. She needed assistance to stand and I had many painful nights. Arthritis cropped up too. We're not getting any younger.

*You will have to coordinate caregivers schedules and take off work when they don't show up or are sick. In the years ahead he may need 24/7 care. You may have to physically clean your FIL or leave that job to hubby. But what happens when he's incontinent of bowels and hubby is at work. You have to do it. Are either of you prepared for changing adult diapers?

*Since hubby already has a lot of stress at his job, his home should be a refuge. But that's not going to happen when his dad demands more of his time (and you're getting less). The stress will be off the charts.

*It's been quoted that 40% of caregivers die before their loved one! That is not a good statistic.

Can you tell what my opinion is?

P.S. Don't do it!

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Do not let guilt cause you to ruin your home. Why can't the FIL live in a facility that has trained professionals to care for him? My own dad is a narsisist and has tried everything to make my home his, he was here for 4 days and was trying to push my husband out of his role as head of house, what, this man willingly let you come stay to get back on your feet and you would disrespect him so blatantly?

I don't know how your relationship is but, you will give up your life, your privacy and maybe your marriage as your wife does not think it is a good idea. Listen to her. Women typically end up with boots on the ground doing all of the hard work. So if you want to loose her, bring dad, but if you cherish her and your marriage find a good facility that has age in place, that way dad can stay at the same place as his needs increase. This will give you the opportunity to be a son and friend not a caregiver, not the one saying, did you poop in your briefs? Really dad it's been 4 days since you put on clean clothes, you have goober all over your front. Dad you need to shower it's been 10 days and you keep saying tomorrow, you are smelling up the whole house, you've pooped in your briefs 5 times this week and I can tell you haven't cleaned up well. No dad that's not toothpaste it's hemorrhoid cream. What's in your hair it smells like peanut butter. Why do you keep yelling it's 3am, I need some sleep. Sorry honey, I know it's your birthday but dad says he can't be alone right now, maybe next year. I know I've said that for the last 12 special occasions but I can't just leave him. Why do you keep calling me, I've already told you I'm in meetings all day, I can't come home and fix the remote.

These are your days and nights to come if you don't let professionals take care of him.

Being his advocate and visiting allows a healthy relationship to be maintained, unless dad is a narsisist then run don't walk away. I am just giving my experience and my dad is in AL. I can't imagine if I couldn't leave and have my space and my family that doesn't revolve around my dad. He is not happy with it, but he is the one that failed to plan.

May God give you the wisdom in this very difficult situation.

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Overwhelming, to the nth power. Physically and emotionally draining. It will change an outlook on safety, increasing concern for risk factors. Your own time for yourself will be limited; you'll end up feeling resentful and that's a legitimate concern.

Your own health will likely be compromised, and dealing with his limited mobility may very well cause back injuries. You'll be faced with the choice of continuing that unhealthy (for you) care vs. not doing it and feeling neglectful, if not guilty.

Depending on how much stress is developed, you may find your attention span limited and your ability for analytical thinking compromised, affecting not only your home life but your job. Attention span can become shorter; decision making is more difficult.

I see no way that anyone can work and handle 24/7 care w/o hiring support staff (private duty) to provide most of the care. And that's a major concern - finding competent, reliable support staff.

I've just gone through a brief stint with private duty and don't want to go through that again. I wasn't prepared to deal with people of limited capability, limited motivation yet the arrogance of feeling superior because they were being paid for caring for someone. And I hired people from a top agency with a good reputation.

(I think the issue is primarily that the quality of the people depends on the holder of the franchise, and the competitiveness in the area.)

Out of 3 people, only one was really qualified, but smoking was an issue.

Don't do this; it'll literally ruin your life b/c it will affect every aspect of your life, including your privacy.

If your husband is insisting, be prepared for some serious friction between the two of you, to the point that you might consider leaving him before compromising your life (seriously). And you will become very resentful as he expects you to do most of the work, especially since he works overtime.

And, looking at the situation from another point of view, your husband's naivety is not the best way to start a caring situation for his father, who may eventually feel unwanted, or resentful of the situation.

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Please be honest, what is it like caring for a parent with limited mobility?

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