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

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

Follow
Share

My husband is insisting that his father move in with us. FIL has parkinsons (stage 3) and is 76 yrs old. I have my own health issues (not debilitating) and feel very strongly that I do not want to take on the care giving role. We are in our late 50's, kids are grown and on their own. This is supposed to be OUR time, while we are still able to enjoy life. Husband has done NO research as to what it's going to take caring for someone who'll end up bed ridden and needing 24 hr care. What I'm asking of this forum: Please respond with honest answers as to what it's like caring for a parent with limited mobility, and/or caring for a parent who needs 24 hr assistance (which will be the case in a few years) so I can have my husband read some honest input. We both work, husband has a very stressful job that often runs overtime. I know husband would feel guilty if he had to say no, even if the stress affected his own health. I've mentioned that FIL could out live him, then what would I do? Help!

Find Care & Housing
86

Answers

Show:
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.
Helpful Answer (40)
Reply to GardenArtist
Report

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.
Helpful Answer (31)
Reply to Grammyteacher
Report

*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!
Helpful Answer (30)
Reply to SueC1957
Report

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.
Helpful Answer (27)
Reply to Isthisrealyreal
Report

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.
Helpful Answer (27)
Reply to talkey
Report

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!
Helpful Answer (24)
Reply to Vickie5297
Report

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.
Helpful Answer (24)
Reply to minstrel
Report

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.
Helpful Answer (23)
Reply to jeannegibbs
Report

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.
Helpful Answer (19)
Reply to talkey
Report

wow! thank you so much everyone that took time (precious time) out of their day to respond to my question. what so many of you have gone thru to care for a loved one is amazing, and honestly a bit heartbreaking. I wanted to reach thru the computer and hug you all. reading these I am so grateful that we can approach the situation with our eyes wide open. hubby has read every single response and it was eye opening and humbling. he truly had no idea what was ahead for his dad, and hearing it from other people has really put things in perspective. after some research on PD and what his dad's future will most likely look like, he realizes we are not physically or emotionally capable of caring for FIL long term, and for FIL best interest he will need to be in assisted living where trained professionals can give him the care he needs. god bless all of you {{{{hugggsssss}}}}
Helpful Answer (19)
Reply to Raven88
Report

See All Answers
Related
Questions