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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What starts off with good intentions turns into an all-consuming lifestyle. If resources are available for placement in a skilled nursing facility - that's a very wise option. No matter how much you care for your loved one, you are doing everyone a favor by outsourcing to skilled caretakers. However, if resources are not available, just plan to tackle the challenge with every available tool to be used at home. Then, perhaps, you might be able to afford to bring in skilled assistance on a limited but regular frequency. We had to calculate the total financial burden of placement in a skilled nursing facility and then figure out we would end up spending a small fraction of that self-pay scenario on all of the tools, equipment, supplies, and home care assistance needed to stay at home. This would help us avoid draining all financial resources prematurely. If you decide on home assistance paid out of pocket, it's a good idea to place a classified advertisement on Craigslist to locate the right person through an agency or, perhaps, someone not affiliated with an agency (this can be more risky due to security/liability issues - but you might get lucky and find a skilled, caring, honest, sole proprietor person and avoid the extra fee normally paid to the agency). This is not a perfect scenario but sometimes turns out to be the only option for people without longterm care insurance, or when Medicare coverage doesn't cover all the expenses. The advantage of using an agency is they are bonded, more reliable, and they handle all sourcing, payroll, taxes, etc.

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Extremely difficult. I cared for both of my parents until the end, but it can be very stressful to say the least. My dad had almost no mobility in his final year and it was a hell of a job. Which is not to say that it doesn't have its "plus" side; if I could I'd do the same thing all over again I would, these were very special years. But, honestly, caring for a person with limited or no mobility is a 24/7 job - getting him to the bathroom, bathing him, changing his clothes, getting him to and from his doctor visits. I still say it's worthwhile, but, yes, don't fool yourself, it will be very, very tough.

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If your FIL moves in, one of you will need to change your job/career to a nurse aide/ caregiver during the day and be on call during the night 24/7/365. No vacation, no break, no going out with friends, basically no life.

Tell your husband to visit some facilities for Parkinson patients and see how the patients behave and what the staff do to take care of them. Ask if he's willing to turn his home into a nursing home and change his career into a caregiver 24/7.

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As Marci suggested do a test run. You didn't say where FIL is now so I assume he is still in his own home. I suggest Hubs stay with his Dad for an entire week end ...not just days but overnite too. I am talking going straight to Dad's after work on Fri & not coming home until after dinner on Sunday. This will give them a chance to talk...hopefully REALLY talk about Dad's future & what is best for all. Maybe Dad doesn't even want to move in after hearing all the options available today. This of course after Hubs reads all the posts here. Maybe you & Hubs could make an outline/notes for Hubs to take with him to discuss with Dad over that wk end stay. Hubs can also assess and note (on this same document or notebook) the changes that will need to be made @ your house. (hand rails, rug removal, ramps etc) I assume he will be the one to install many of those items & that needs to be done ASAP if Dad will be moving in. Almost forgot! Can Hubs visit an AL facility perhaps after work one evening to see for himself whats available in your area prior to the wk end with Dad?

Then try a week end with Dad in your own home. Be prepared tho to watch him constantly as he is not accustom to your home will be a high fall risk. This will give you both more of an understanding of his needs & the numerous modifications you will have to make to your home. IE: hospital bed, commodes, hand rails, shower chair, ramps, dietary needs...the list goes on & on.....

I was prepared (or so I thought!) & willing to move into my Moms house post stroke to take care of her as she is my best friend & made so many sacrifices for me over the years. I could count on her for ANYTHING & still can to this day. Thankfully she is still mobile & able to toilet & feed herself but is now showing signs of ALZ. It is "the best of times & the worst of times" on so many levels.

There are days I wonder how got myself into this situation & whatever made me think I could do it. Those are her "bad days" which are now outnumbering her good days. It is an emotional roller coaster for sure.

The best to you both...

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Everyone has EXCELLENT responses. I can tell you from experience though that during the past "12" years of caregiving (the last 7 years being 24/7), I have aged "20" years, losing my health and sanity, lost my relationship, friendships that have drifted away due to my unavailability, my identity and no longer feel like a whole person, had to quit my full-time job and take a much less paying job to be close-by, do not sleep for fear of my loved one getting out of bed and falling, etc., etc. Her dementia is progressing, but she becomes stronger in will and is 91! Unless you have a great deal of help (and I bet most of the care will be on your shoulders), your marriage will not survive. Sorry, this is the reality of my experience. You wanted honesty and the only good there is, is that your loved one receives care that he would never be provided in any facility. I wish you peace and guidance in your decision.

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As someone who has taken care of a parent with Parkinsons for over 7 years - all I can say is that it is a progressive disease... - my mother is 88 and has very limited mobility. She needs assistance and help with everything- think errands, social life, prescriptions, shopping, Dr appointments, showering. meal prep and carrying things back and forth and so on etc. Not only is her mobiity affected with this disease, so is her thought process now- which means care in other areas as well- think paperwork, bills, and so on. We are now at the point of having intercoms around the house in case of night time falls - so the sleeping is'nt so great.

At first she was pretty independent, so a few years were not so bad. She has her own Independent Living area and I was able to manage working from home. After a few years, things began to progress
In retrospect this has been the most difficult time of my life and that includes marriage, financial and so on. It also brought out who was actually someone who cared and who wasn't. This included family. We are early 50s and feel like our lives have come to a screeching halt. If you can swing a caregiver to come and help or think you can get some kind of help lined up, it may be do-able. I thought I would have help from the nearby sibling- but haven't seen hyde nor hair unless its time for him to pick up a Christmas or birthday check. The narrow road is always hard - Look into all your options. Maybe his Dad could give a try at a local assisted living place. He may even NOT want to come live with you Sounds like you are worried it may all end up on you with your husband working so much. If not, you would prob have to oversee things either way. Make sure he is aware that the care eventually may become 24/7 . Caregivers/sitters for PD usually charge between 16 and 24$ an hour here. You didn't mention his health overall- which may affect his Parkinsons progression. My mom was in fantastic shape and exercising into her mid 80's- While I m sure that has helped, she still needs LOTS of help with mobility now as she is in the late stages of it, which now includes the dementia and the hallucinations. Most people on here have been honest and there are some days where I am extremely frustrated and resentful, and other days when I think- Oh this isnt that bad. I got this.

It's a lot and I mean A LOT of work. Be prepared to give up your "self" . That said- I couldn't live with myself if I didn't try....so., even though it has been very very hard, no regrets in the end.

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Helping to care for my sweet dad who had Parkinson's---unbelievably hard. PD doesn't "get better" it just gets worse and worse. As soon as you have adapted to the "new norm" something else happens. Daddy lived in an apartment in my brother's home with my mother. She was so worn out by the time dad died, she never spoke about him again--only in kind of oblique references to how his illness stole their "golden years". I think she's still mad at him, honestly.

As he got sicker, the stiffness in his limbs made moving him a 3 person job. He was a big man, and thus added to the strain. Seeing my once healthy, incredibly intelligent daddy turn into a one syllable speaking, 24/7 bedridden invalid was horrible.

You don't want to hear the sugar coated "oh what a blessing to have daddy with us"--it usually isn't anything but heartache and depression. I WISH mother had allowed him to be placed in a SNF where he would have certainly had better care and more visitors.

Just my experience.

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The others have given excellent advice, and for the most part it's the same. That if you are not 100 % certain that you want to do this and totally understand the burdens and scrifices you will bear. And do not doubt that their WILL be huge sacrifices, as described in the other post. But the they only briefly mentioned parts of YOURSELF that you eventually sacrifice, beyond your time, comforts, your job/career, expenses, and financial security of your own future lost to an early retirement, or extented time off work, pleasures, private times, sleep, fun, vacations, in additions to friends and social life. That's a lot to lose. But it's only the last on that list, that I'm referring to. When when you can no longer participate in social life, your friends an extended family seem to fade away. And try as you might, you will resent not just their loss, you will resent the reason you lost them. You will get angry. Angry at your spouse for talking you into this. Angry at the parent you care for. Angry at the friends and extended family who have "left you" with this burden while they happily go about their lives while you are stuck home being chief dogs body and poop cleaner. And that's where the bigger loss comes in. What you have lost is yourself. You are no longer the person you were. You used to be a friend, a professional, intelligent, aware, involved person. Now you you have no time to think about anything beyond giving medications, cleaning poop, monitoring bills, hoisting an immoveable person, and praying for some sleep and being angry. And the more other people (spoue, siblings, adult children, etc.) who might have helped you, but didn't, the angrier you'll be. Does that sound like someone folks want to hang out with?? No, I didn't think so. It's not someone you want to be, either. Is that house a place anyone wants to be? Are you surprised when your marriage ends too? ...? Then, you the caregiver, hopefully is still alive when when the caregiving ends. But you wont' ever be the same person you used to be. The damage done to your health remains, your job is gone, the anger at the entire situation is still there. Your friends have moved on. So have other people. And all this was lost because you wanted to be a good son or daughter to your parent. The irony being that in the process you stopped being any kind of son or daughter. You became first the chauffer, the shopper, the bill payer, the cook, the feeder, the gopher, the person who does all the dirty work, then a controller, jailer, fighter, parent. But you no longer have a parent, because that person is gone. And so is the person you used to be. Chances are you won't like the person this job had made you.

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Please don’t do this. Read your question again. Every bone in your body and every ounce of sense is accurately telling you NO. It will ruin your marriage, family, health (mental, physical, emotional, spiritual) and career. I know.

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I strongly recommend that you and your husband meet with a medical professional to talk about Parkinson's and its likely progression before you make any decision. What may be workable for a time can quickly become overwhelming. As others have mentioned, many people with Parkinson's develop dementia. Problems eating and drinking are common as well, and that's on top of the progressive mobility problems.

Besides meeting with a medical professional experienced with Parkinson's, I recommend meeting with one or two people who are full-time caregivers near you and asking a lot of practical questions about how they set up their house, cost, and what their life is like. Unless you are very clear that both of you want to take this on, don't do it.

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Please gently explain to him how difficult it would be for both of you. You understand that he cares about his father. You do too. But this is your time together. You want and need to make the most of it while you can. Maybe find some help for him so he is cared for. Maybe you and him can talk to people together about their experiences so he understands.

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DoingbestIcan - Well said!

Raven88 - please read his/her response again, and to your husband, too.

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Yes, Raven8, you are absolutely right to know that this will be the most difficult thing you have ever done. I will pray that your husband will read the input and responses on this site. Go into it ONLY with eyes wide open. It will be very, very hard. I'm going to have to do the same thing shortly -- retire early and move 11 hours away to take care of Mom. Her LTC $ will be out and none of the Medicaid funded facilities I've been able to find are acceptable to me. I read this site daily so that I remind myself what I will be up against. It's admirable that your husband wants to take care of his dad, but YOU are really the one who will do most of the care-taking.

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Your first sentence; "My husband is INSISTING that his father move in with us."
Remind your husband that your marriage is a democracy where both voices are heard. No one has power over the other.

Case in point;
My husband just started at a new gym. He's become friendly with all the guys there.
We'd like to take a little vacation in May and he told me one of the gym guys could take care of our house, dogs and cats. WHAT? ARE YOU CRAZY? You don't even know these guys.
HIS IDEA DIED RIGHT THERE! When one of the couple says "No", even if it SEEMS like a good idea to the other, the answer is NO!

What if you wanted a Bengal tiger cub as a pet? He would say "NO" and you would NOT get your tiger cub.

The person who says "no" has the final say.

It's also not fair for him to ASSUME you would do ANY of the work, especially since you are against the idea.

Find a nice AL facility that has a Complete Care or Skilled Nursing section for when FIL needs more care. Visit him 2-3 times a week.
You will save your physical health, mental health, marriage, self esteem, friendships and finances with him in a facility. Being in a facility doesn't mean he's not loved-actually you are free to do lots of nice things for him if you aren't bound to him by a ball and chain.

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My FIL lived with us for most of our marriage (he and his wife did not do well together) and when he developed PD in his 70's he was already settled in with us. He already had a bedroom next to a bathroom, on the main floor of the house. For some years, it was just a case of my taking care of his meds and meals, but I had already been doing that, and he was used to my cooking (and he was already OK with no salt). We also had three teenagers at home who had grown up with him, and were very helpful (which they had been when we had his wife for most of her last year, three years earlier, as well.) Fortunately, his mind was reasonably clear, but the major problem was falling. He was 200# and could lose his balance in the middle of an open room, and needed two people to get him up. He loved walking around town, but we couldn't trust him to do that. We tried a facility that had a lot of residents who spoke his language (his English was limited) but within a week he escaped several times, so they asked us to come get him. As it turned out, his heart gave out that weekend, which was, I feel, merciful. He was 82.
My other experience with PD was an older brother, who first began getting lost driving when he was in his late 70's, and he was a person who never got lost! His wife passed about that time, and he cared for her reasonably well, with a son and DIL close at hand. When he couldn't live alone, his son got a condo just down the street from his place, and found a young woman caregiver who loved older people and was very good with him. Eventually his son moved him with them, with the caregiver with him days as well. His memory did fail, with odd periods of clarity, and he pretty well recognized family. I live quite a ways away, so wasn't there often, but he always recognized me. Fortunately, he had always been an interesting person with a great sense of humor, which he kept until he couldn't speak, and his DIL said he was always good company even if the conversations were unusual. On his last days, he was completely bedridden and stiff; couldn't move at all. He was fortunate to have a son and DIL who were themselves retired but in reasonably good health, with helpful grandchildren close, a daughter within visiting distance, a great caretaker, and a small town of nice folks.
PD is a very challenging condition to deal with; it depends a lot on how it develops and how the patient responds.

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This is the hard truth of caregiving:
#1 Modification of home for elder
#2 Daytime nurse for when husband is at work
#3 The need to prepare for elder care
#4 Bedside commode
#5 Meal/nutrition plan
#6 Medication retrieval and maintenance
#7 Mobility issues
#8 PCP visits and transport
#9 Specialty doc visits and transport
#10 Diapering, if required
#11 Incontinence
#12 Night terrors
#13 Caregiver respite
#14 Date night for husband and wife
#15 Caregiving burnout
#16 Mail transference and maintenance (Medicare insurance, etc.)

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Llamalover47 has a GREAT list. And please ask your husband to also think about all of the costs that must now be incurred. I am going broke just paying for Mom's adult diapers, thickened juices, and meds. I spend an extra $500 a month on things like that. Make sure that those are in the budget. And I should be saving for my upcoming retirement.

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My mom, was a super nice person. Luckily, dementia didn't change her personality. But she had a lot of health issues and her care was constant. I went from a fulltime job, corporations don't care about families unless it makes them lol good. To a part-time job, eventually staying home made sense. She couldn't cook, would forget ingredients or worse forget to turn off the stove or oven. Even place paper napkins or plates so close to the flames that they would catch fire. Plus her tastes changed, what were once favorites she no longer ate or liked. Plus those other health issues determined what she could or couldn't eat. Lifting her was a challenge, sometimes it was easy sometimes it took both me and my dad to do it. Lifting: to get her up in the morning, to her wheelchair, to her 3in1 chair for toileting and/or bathing, to get her in and out of the car for her doctors appointments. Oh yes, making the appointments for doctors and specialists and getting her to them. feeling alone, because everyone that said they would be there or help failed to show up. Even just ASKING them to visit and come see her was an imposition for most. I had 1 out of 5 brothers I could totally depend on. You don't mention other inlaws that could help, don't depend on them! Please, look up, research and don't forget about making your one handicapped accessible. There is so much to be done. Good luck with whatever decision you make.

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Such very good, honest advice you have been given. I'd like to share with you my own experience with taking in a parent with limited mobility.

At my husband's suggestion -- I didn't want to -- we took my mother in. She was 94 with dementia & had limited mobility. Oh my goodness, we thought we were prepared & we were not! She was with us for 2 months and no one slept. Did I mention I had help? We covered 7am-7pm in 2 6-hr shifts per day -- an aide for 2 of them, 2 CNA DILs each had 4, & I had the remaining 4. That left 7pm-7am which we didn't know until Mom moved in that she didn't sleep most of that time. As a result, none of us slept during that time either. Even with all that help, time alone with my husband was non-existent. And that doesn't even cover the increase in food and utilities or the constant eating or the washer/dryer being used 2x/day just for her because of her accidents or the hair appointments or the hygiene "discussions" (battles) or the clothes that she would change at every opportunity or ..... well, the list goes on & on. Going to the grocery store was a tactical exercise. Those 2 months completely changed family dynamics that we are still trying to recover from, and it was 3+ years ago.

Fast forward to 2 months ago when hubby suggested his mother move in with us because his father passed & she can't live alone. Never mind that she moved in with his 2 sisters (who live together) & they can't deal with it. They both are home all day, get everything delivered, & are having difficulty. I reminded him that since it is his mother, HE would be the primary caregiver, with me assisting. LOL -- the expression on his face was priceless.

Everyone thinks it will be like on the TV show The Waltons. My experience is that it is not.

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Raven, It's scary. They are always on the point of falling and hurting themselves. You're responsible for ensuring that it doesn't happen. You're in dread of failing them and at the same time you have to avoid being hurt yourself. It can get to be impossible.

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Your husband MUST educate himself about Parkinson's disease. Even if you don't take him to live with you, check out the Parkinson's support groups. True the disease varies from person to person, but everyone who has it gets worse. The eventual dementia the changes in physical abilities sometimes change by the day. Sneaking off and pooping in trash cans, leaving the refrigerator open or turning on the stove and walking away. Walking is another issue. With the shuffling feet it is easy to fall and getting them back up means a call to local fire dept. I helped my Mom take care of my Dad through the worst of it. The last 4 months we had to place him in VA. Mom had collapsed from the stress and I had hurt my back at work and could not do the physical work. He hated the VA but died peacefully in his sleep at 79.

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It sucks!

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Not only is it taxing as a single person who does it. She has her faculties but is selfish and acts up if she knows that I have plans to go out to enjoy myself. I do it anyway.

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My mom doesn't have Parkinson's. Don't feel guilty if you decide to place her/him in an assisted living facility. Just be on top of their care. Stop by unannounced. Mark their overnight pads or briefs with a marker to check how often their changed.

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Its what your husband wants but will he be the one doing all of the work? Probably not and it will all be up to you which will exhaust you and cause you great anger, as you have enough on your plate dealing with your own health issues. If money is no object and you can quit your job to do this, that would be great. But do not try to do this if you have to keep your job. Parents need to quit laying all of this on there kids.

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At 57 yrs of age, I uprooted myself to be able to care for my parents who were well into their 80's. Being an only child that had the best upbringing one could ever hope for, I always knew I would be there for Mom & Dad as they aged. As it turned out, we ended up moving my parents and myself to Arizona where my Aunt was living alone. After 2 yrs we made a family decision to look at finding one big home instead of having three. We found a beautiful spot with an ideal floor plan. To make a long story short...I became a live-in caregiver to all three members of my family. It has been 10 yrs now.
I did this on my own, had I been in a relationship with someone, we would no longer be together. It is mostly the Parkinson's related Dementia that destroys. Luckily my family did not have Parkison's however Mom had early onset Dementia and is now in final stages. (over 9 yrs of her losing herself).
Dad passed at 97 yrs young from a fall. Auntie is 94 yrs young and still with me, many health issues and Mom has been in a Memory Care Community for 9 months and just made 98 yrs. These three people became my world and I can not imagine not having them in my life, yet would I do it the same way again...ABSOLUTELY NOT.
There are many things in life that are extremely difficult, this tops any and all!!!
I called in Hospice for Mom when I felt her time was close. It ended up that they saw me as the person that needed immediate support. They felt I was ready to collapse from exhaustion, frustration and that I was in way over my head. ( At this time my Dad had passed and my Aunt not being in physical shape to help, left it to lil ole me).

It will be out of Love for Your Father, Yourself and your Wife that you find him a Safe and Comfortable Community; for him to call home. Oh...it hurts, I still lose it when I think someone else is caring for my Mom, I have come to realize it was so much better for her in the long run.
Yet, another thought in ending...I was told that I was more prone to the disease if I remained under the stress of caregiving a family member with Dementia. It is a very ugly disease, it just tears you apart.
I am so sorry

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Youll be looking after him. Men are so inconsiderate. Youve done your bit with children Enjoy your life now. They should teach children in school today your born alone you die alone and you have to pay for help when your older andnit spoil another persons life. These parents did what they like when they were young. Average people alwaya clinging to othets.

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Please let us know if he read any of the comments above?

If so, has he now changed his mind or is he going to give up his job?

Hugs

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Mwaras1-
You wrote :"Men are so inconsiderate"

That is an ugly generalization about men. How would you like it if a man said the same about women or used any other disparaging word to refer to all women?

What you said is not even true about the OP's husband. He is very considerate of his dad's needs, but he is ignorant about the challenge that they will face and the sacrifice that they will have to make.

Most of us didn't know either until we stepped into the caregiver's role.

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We are also in our mid-50's. We have been taking care of my mom with Alzheimer's Disease in our home for 10 years. For the past four years she has had limited mobility. We are doing it. It is a lot of work but we would not have it any other way.

For us, it is manageable. You have to take into account how strong you are and how much your dad weighs. My mom is at 115 lbs which is a blessing. Also, both of us are athletes. We can do the heavy lifting without issue. This has made our marriage stronger. We are a solid team. Both of us totally onboard with this. I look at my husband with more love and more admiration than ever before seeing all he does for my mom. Not only that, but is is gentle and charming with her. My mom is appreciates and adores him. She says please and thank you. She is so happy and excited each time he comes home from work. She knows he comes at 7pm and starts watching for him to arrive home. The respect and love she has for him is earned.

We were dating when my mom was originally diagnosed. I quit my job to stay with her full-time. He married me two years into this. She hated him and was against our marriage. Now, she loves him. He patience and gentle nature won her over. She knows her place is with us and we take her with us everywhere we go.

It has been a good journey for us.

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

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